Healthy Children: Investing in the Future

February 1988

NTIS order #PB88-178454
Library of Congress Catalog Card Number 87-619858

For sale by the Superintendent of Documents

U.S. Government Printing Office, Washington, DC 20402-9325

(order form can be found in the back of this report)
Foreword

Infants and young children are among America’s most vulnerable citizens; they

are utterly dependent on their families and communities for the resources required to

live and grow into healthy and productive adults. Health care for young children must

be viewed as an investment with potential payoffs that will extend throughout their

lifetimes, Like all investments, those made for children’s health care should be channeled into directions that can most efficiently improve children’s health.

OTA was asked by the House Energy and Commerce Committee and its Subcommittee on Health and the Environment and the Senate Labor and Human Resources

Committee to examine the effectiveness and costs of selected strategies for promoting

and maintaining the health of children and to identify strategies whose implementation

could substantially improve children’s health or lower health care costs. The Committees also wanted to know why the infant mortality rate in the United States does not

appear to be declining as fast as it has in the past and whether children have access

to the care they need. The Senate Finance Committee asked OTA to examine the evidence on the effectiveness and costs of ambulatory tocodynamometry, a new prenatal

care technology for monitoring pregnant women at high risk of premature labor.

This OTA assessment addresses all of those issues. Two related reports have already been issued as part of this study. An OTA technical memorandum, TechnologyDependent Children: Hospital v. Home Care, was released in May 1987 in response

to specific questions about this group of children with special health care needs. OTA

also prepared a case study, Neonatal Intensive Care for Low Birthweight Infants: Costs

and Effectiveness, in December 1987 that examines the most recent data on this costly

but life-saving treatment for low birthweight newborns.

This assessment was ably assisted by an advisory panel, chaired by Harvey Fineberg, Dean of the Harvard School of Public Health. In addition, many individuals from

academia, the Federal Government, the private sector, and the public provided information and reviewed a draft of the assessment. The final responsibility for the content

of the assessment rests with OTA. Key staff involved in the analysis and writing were

Judith Wagner, David Alberts, Marvin Feuerberg, Elicia Herz, Kerry Kemp, Julia Ostrowsky, and Elaine Power.

Director
Advisory Panel on Technology and Children’s Health

Harvey Fineberg, Chairman

Harvard School of Public Health

Boston, MA

LuAnne Aday

Center for Hospital Administration Studies

University of Chicago

Chicago, IL

Julianne Beckett

Child Health Specialty Clinic

University of Iowa

Iowa City, Iowa

Donald Berwick

Quality of Care Measurements

Harvard Community Health Plan

Boston, MA

Alexander Capron

Medicine and Public Policy

University of Southern California

Los Angeles, CA

Norman Fost

Program on Medical Ethics

Department of Pediatrics

University of Wisconsin Hospital

Madison, WI

Robert Goldenberg

Department of Obstetrics and Gynecology

University of Alabama

Birmingham, AL

Michael Grossman

Health Economics Research

National Bureau of Economic Research

New York, NY

Robert Haggerty

W.T. Grant Foundation

New York, NY

Patricia King

Georgetown Law Center

Washington, DC

Phyllis Leppert

Director of Perinatal Research

St. Lukes/Roosevelt Hospital Center

Columbia University

New York, NY

Harvey Levy

IEM-PKU Program, Children’s Hospital

Boston, MA

Edward Lis

Division of Services for Crippled Children

University of Illinois

Chicago, IL

Joanne Macon

Holman Health Region

Chicago Department of Health

Chicago, IL

John MacQueen

Child Health Specialty Clinic

University of Iowa

Iowa City, IA

Janet Reis

School of Nursing/SUNY Buffalo

Buffalo, NY

Sarah Rosenbaum

Children’s Defense Fund

Washington, DC

Barbara Starfield

Division of Health Policy

Johns Hopkins University

School of Hygiene and Public Health

Baltimore, MD

NOTE: OTA gratefully acknowledges the members of this advisory panel for their valuable assistance and

thoughtful advice. The panel does not, however, necessarily approve, disapprove, or endorse this report.

OTA assumes full responsibility for the report and the accuracy of its contents.

iv
OTA Project Staff—Healthy Children: Investing in the Future

Roger C. Herdman, Assistant Director, OTA

Health and Life Sciences Division

Clyde J. Behney, Health Program Manager

Judith L. Wagner, Project Director

David W. Alberts, Research Analyst

Pony M. Ehrenhaft, Senior Analyst

Marvin A. Feuerberg, Analyst

Elicia J. Herz, Analyst

Kerry B. Kemp, Division Editor/Analyst

Julia T. Ostrowsky, Analyst

Elaine J. Power, Analyst

Other Contributors

Sarah M. Dry, Research Assistant

Brigitte M. Duffy, Research Assistant

Hellen Gelband, Senior Analyst

Mary Ann Hughes, Research Analyst

Pamela J. Simerly, Analyst

Administrative

Virginia H. Cwalina, Administrative Assistant

Carol Ann Guntow, P.C. Specialist

Karen T. Davis, Secretary/Word Processor Specialist

Carolyn D. Martin, Clerical Assistant

Contributing Contractors

Martha Burt, The Urban Institute

Howard Dubowitz, Washington, DC

Isaac Eberstein and Robert Weller, Tallahassee, FL

Harriette Fox, Washington, DC

Charles Homer, Massachusetts General Hospital

John Iglehart, Potomac, MD

Michael Kenney, Pinole, CA

Lorraine Klerman and Helen Burst, Yale University

Peter McMenamin, Chevy Chase, MD

Bonnie Preston, Takoma Park, MD

Leon Robertson, Branford, CT

T. Paul Schultz, Yale University

Katherine Swartz, The Urban Institute
List of Related OTA Reports

● Background Paper:

—Children's Mental Health: Problems and Services.

OTA-BP-H-33, December, 1986, GPO stock #052-003-01040-2, NTIS order #87-207 486/AS.

• Technical Memorandum:

—Technology-Dependent Children: Hospital v. Home Care.

OTA-TM-H-38, May 1987, GPO stock #052-003-01065-8.

● Case Study:

—Neonatal Intensive Care for Low Birthweight Infants: Costs and Effectiveness.

OTA-HCS-38, December 1987, GPO stock #052-003-01089-5.

NOTE: Reports are available through the U.S. Government Printing Office, Superintendent of Documents, Washington, DC 20402-

9325, (202) 783-3238; and the National Technical Information Service, 5285 Port Royal Road, Springfield, VA 22161-0001,

(703)487-4650.
Contents

Chapter

1. Summary and Policy Options . . . . . . . . . . . . . . . . . .

Page

. . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Part I: Overview of Children’s Health

2. Children’s Health Status: Current Trends . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31

3. Children’s Access to Health Care. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53

Part 11: Prevention of Childhood Illness—Selected Topics

4.

5.

6.

7.

8.

Prenatal Care. . . . . . . . . . . . . . . . . . . .

Newborn Screening . . . . . . . . . . . . . . .

Well-Child Care . . . . . . . . . . . . . . . . .

Prevention of Accidental Childhood

Prevention of Child Maltreatment. .

Appendix

A.

B.

c.

D.

E.

F.

G.

H.

I.

J.

K.

L.

M.

Method of the Study . . . . . . . . . . . .

Acknowledgments . . . . . . . . . . . . . . .

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73

. .

In

. .

... . . . . . . . . . . . . . . . . . . . . . . . . . ....

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....

uries. . . . . . . . . . . . . . . . . . . . . . .

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

. . . . .

. . . . .

U.S. Infant, Neonatal, and Postneonatal

OTA’s Derivation of the Estimate of the

Health Insurance . . . . . . . . . . . . . . . . . . . . .

Physician Participation in Medicaid . . . .

Ambulatory Tocodynamometry . . . . . . . .

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Mortality Rates . . . . . . . . . . . . . . . . .

Population of Children Without

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

. . . . . . . . . . . . . . . . . . . . . . . ...... . .

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Background Information on Prenatal Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Disorders Currently Detected by Newborn Screening . . . . . . . . . . . . . . . . . . . .

Data and Methods Used in OTA’s Cost-Effectiveness Analysis of Strategies

for Newborn Screening . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Effectiveness of Well-Child Care and Cost-Effectiveness

of Childhood Immunization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Current National Data Sources on Accidental Injuries . . . . . . . . . . . . . . . . . . .

Preventing Unintended Pregnancies in High-Risk Women:

School-Based Clinics. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Glossary of Abbreviations and Terms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

... . 93

. . . . 119

. . . . . 147

. . . . . 167

Pag e

. . . . , 189

. . . . . 191

. . . . 195

. . . . . 197

. . . . . 198

. . . . . 202

. . . . 212

. . . . . 231

. . . . 236

. . . . 242

. . . . . 256

. . . . . 258

. . . . 261

. . . . . 271
Chapter 1

Summary and Policy Options
CONTENTS

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Study Boundaries . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

Trends in U.S. Infant Mortality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

Preventing Low Birthweight . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

prenatal care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Comprehensive School-Based Clinics for Teenagers . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Preventing Health Problems in Early Childhood. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Newborn Screening for Congenital Disorders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Well-Child Care... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

Preventing Accidental Childhood Injuries. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

Preventing Child Maltreatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

Improving Children’s Access to Effective Health Services . . . . . . . . . . . . . . . . . . . . . . . . . 17

Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

Options for Federal Policy. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

Expanding Access to Prenatal Care for Poor Women . . . . . . . . . . . . . . . . . . . . . . . . . . 19

Encouraging the Development of Comprehensive School-Based Clinics

for Adolescents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20

Promoting Effective Newborn Screening Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21

Encouraging Appropriate Well-Child Care... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22

Encouraging the Use of Child Safety Restraints in Automobiles . . . . . . . . . . . . . . . . . 23

Encouraging the Development of Nurse Home Visitor Programs. . . . . . . . . . . . . . . . . 23

Improving Poor Children’s Access to Physicians’ Care . . . . . . . . . . . . . . . . . . . . . . . . . 24

Tables

Table No. Page

l-1. Burden of Illness in U.S. Children . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

l-2. Net Incremental Health Care Costs of a Low Birthweight Birth . . . . . . . . . . . . . . . 9

l-3. Incremental Effectiveness and Health Care Costs of Six Expanded Newborn

Screening Strategies Compared to a Basic One-Specimen, Two-Test Strategy . . . 13

Figures

Figure No. Page

I-I. U.S. Infant Mortality Rates by Race, 1968-85 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

l-2. U.S. Children’s Medical Visits: Mean Number of Visits

by Family Income, 1980 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
Chapter 1

Summary and Policy Options

INTRODUCTION

A nation’s future lies with its children. Thus,

the health of children is a matter of fundamental

importance to all societies. In highly industrialized countries like the United States, the vast

majority of children are healthy,1 but preventing

disease and reducing injuries among the young

holds promise for even further improvements in

their well-being.

Substantial improvements in children’s health

have been registered in the United States within

the recent past. The U.S. infant mortality rate,

for example, declined from 14.1 per 1,000 live

births in 1977 to 10.8 in 1984, and the mortality

rate of children between 1 and 14 years declined

from 42.3 per 1,000 in 1977 to 34.1 per 1,000 in

1984.

Without dismissing the importance of such

gains, one can cite at least three compelling reasons for an assessment of strategies for further improving American children’s health. First, the evidence suggests that the United States is not doing

as well as it could in preventing health problems

in children, despite the improvements to date. Second, prevention or treatment of health care problems in early childhood can benefit a child for a

lifetime, and, conversely, failure to prevent such

problems can be costly to the child, the child’s

family, and the Nation. Finally, the burdens of

illness, disability, and death are not borne evenly.

Some American children are at particularly high

risk for poor health, and many of them have only

limited access to medical services.

The high cost of poor health in infants and children suggests that some preventive strategies, ’

even those approaches that are initially expensive,

‘As used in this assessment, health reters to physical, not emotit~nal or mental health. As many as 12 to 15 percent of the Nat][~n’s children may \utter trom mental or emotional problems. For

.] clI\c usslon ~~t Issue> ln~t~l~ln~ children’+ mental health, see OTA’\

back. grf)und piper Chjldrrn\ i!t>ntdi I{ealth. ]’rc~b]ems and ser~r

1( (’~ (M13 I

‘A preventive strategy i~ any action taken by indl~’lduals, proles-

\I (]na I \, or govern men ts t () a 1 ter the environment, change the bePhoto credit: March of Dimes Birth Defects Foundation

Prevention or treatment of health care problems in

infancy or early childhood creates a Iifetime of benefits

for the child, the child’s family, and society.

may have payoffs in improved health, lower medical care costs, or both, that make them well

worth their expense. The principal objective of

this OTA assessment was to identify preventive

strategies with high payoffs in relation to their initial costs.

havior of a child or the family, or provide effecti~’e health care with

the intention of preventing disease or injury (364). A strategy includes not only specific preventive technologies (e. g., vaccines or

childproof safety caps for medicines I but also the means ok financI ng, organ iz ing, and delivering such technologies (e. g., manda t or-y

school immunization programs)

3
4 ● Healthy Children: Investing in the Future

STUDY BOUNDARIES

Given the wide range of potential issues in children’s health, boundaries were needed for OTA’s

study. OTA focused on preventive strategies

applicable to preadolescent children, because the

major health problems of adolescence have their

origins in emotional and behavioral problems

rather than in problems of physical health.

Furthermore, the assessment focused largely on

strategies involving personal health care services,

not on strategies involving, for example, the

educational sector or the larger environment in

which children are raised. Some authorities claim

that American children’s health problems can be

effectively addressed only in the context of a comprehensive national strategy that considers the implications of changes in the structure of the American family, the increasing percentage of mothers

who work outside the home, and the increasing

percentage of children in poverty (248,396,639).

Although a good case can be made for a comprehensive national strategy on children, and some

elements of such a strategy are already in place,

there is still good reason to search for more limited

actions that can be implemented and that can benefit children today.

This assessment of preventive strategies placed

heavy emphasis on the importance of reducing the

U.S. infant mortality rate, which is almost double the rate in Japan and higher than the rates in

15 other developed countries (733). One of the

primary causes of infant mortality is low birthweight (under 2,500 grams or 5 lbs. 8 oz.), Two

personal health care strategies for preventing low

birthweight are examined in this assessment:

● providing better access to family planning

services for high-risk women, particularly

adolescents; and

● improving prenatal care for pregnant women

at high risk of giving birth to low birthweight

babies.

OTA also focused on four other health problems of young children:

● congenital disorders detectable by newborn

screening techniques;

● diseases and conditions preventable through

well-child care;

● accidental injuries; and

● maltreatment (child abuse and neglect).

Each of these health problems accounts for a substantial burden of illness, disability, and death in

U.S. children. Table 1-1 summarizes some pertinent facts about each area chosen for study.

TRENDS IN U.S. INFANT MORTALITY

Infant mortality is a matter of widespread con- tively easy to monitor with basic vital statistics

cern in this country. The infant mortality rate for collected in most countries.

any year is defined as the number of infant deaths The United States ranks 17th among industri- under 1 year of age per 1,000 live births in the alized countries in infant mortality, and its posisame year. About 1 percent of all babies born in tion has not improved since 1980 (733). If the U.S.

the United States—40,030 in 1985—die in the first infant mortality rate in 1985 had been equal to year of life (709). Almost two-thirds of these infant deaths occur in the neonatal period (the first that achieved by the country with the lowest rate

(Japan, with a rate of 5.5 deaths per 1,000 live

28 days of life); the others occur in the postneona- births in 1985), there would have been 19,350 tal period (28 days to 1 year). fewer infant deaths in the United States that

The infant mortality rate has long been a pri- year—a sum greater than the number of deaths

of all U.S. children 1 to 15 years of age in 1985. mary indicator of the overall health status of nations for two reasons. First, it tends to be closely The high U.S. infant mortality rate is brought

associated with access to food, shelter, education, about largely by the high low birthweight rate in

sanitation, and health care; and second, it is rela- this country. Low birthweight so overwhelms
Chapter l—Summary and Policy Options ● 5

—

Table 1-1 .—Burden of Illness in U.S. Children

Problem Burden of illness or cost

Infant mortality and low birthweight ●

●

●

●

Congenital disorders detectable by newborn ●

screening

Conditions preventable through well-child •

care

●

●

●

●

●

●

●

●

●

Accidental childhood injuries

Child maltreatment

Almost 40,000 babies (1 percent of all U.S. births) die in the first year of

life each year.

The United States ranks 17th among industrialized countries in infant

mortality.

6.7 percent of all U.S. newborns are low birthweight babies (under 2,500

grams, about 5 Ibs. 8 oz.).

16 percent of all very low birthweight babies (i.e., those weighing under

1,500 grams, about 3 Ibs. 5 oz.) are moderately or severely handicapped.

About 4,500 cases of detectable diseases causing death or mental

retardation occur each year.

37 percent of U.S. infants were fully immunized against diphtheria,

tetanus, and pertussis (whooping cough) in 1983.

78 percent of white children and 62 percent of nonwhite children from 1

to 4 years old were fully immunized against polio in 1985.

Almost 8,000 cases of measles occurred in the United States in 1986.

7,850 deaths were caused by accidental injuries in children under 15

years old in 1984.

1 in every 9 children is hospitalized for accidential or other injuries before age 15.

10 million emergency room visits per year are made for accidental or

other injuries.

At least 1,200 children’s deaths in 1986 occurred as a result of child

abuse.

24,000 children sustained serious physical injury due to child abuse in

1983.

1.9 million cases of suspected child abuse and neglect were reported in

1985,

150,000 to 200,000 cases of sexual abuse occur in the United States

each year.

SOURCE Off Ice of Technology Assessment, 1988

other health problems of early childhood that it

cannot be ignored. The prevention of low birthweight and infant mortality has been a recent concern of many groups in this country (296,604);

in 1979, the U.S. Surgeon General’s Report on

Health Promotion identified the reduction of infant mortality as a fundamental goal of the Nation (715).

Until the early 1980s, the United States made

remarkable progress in reducing infant mortality.

During the 17-year period from 1968 to 1985, the

U.S. infant mortality rate declined by about 50

percent for both whites and blacks—from 21.8

deaths per 1,000 live births in 1968 to 10.6 per

1,000 births in 1985 (see figure l-l). The average

annual compound rate of decline during this

period was 4.2 percent. The infant mortality rate

for blacks remained equal to about twice the white

rate throughout the 17-year period.

In the early 1980s, the pace of the decline in

the U.S. infant mortality rate slowed appreciably. In the 3-year period from 1981 to 1984, the

annual average of rate of decline was 3.3 percent,

down by about 20 percent from the 4.1-percent

average experienced in the 4-year period from

1977 to 1981. And provisional U.S. infant mortality data extending into 1987 indicate continued

deterioration in the pace of decline.

Year-to-year fluctuations in reported infant

mortality rates are to be expected, but the recent

slowdown in improvement of the U.S. infant mortality rate cannot be dismissed as a random variation around the trend. At OTA’s request, the

National Center for Health Statistics (NCHS) predicted U.S. infant mortality rates for the 3-year

period from 1982 to 1985 on the basis of trends

in final U.S. infant mortality rates from 1968 to

1981. The U.S. infant mortality rate in 1985 was

10.6 infant deaths per 1,000 live births, significantly higher than the rate predicted for that year

on the basis of the NCHS analysis (9.9 deaths per

1,000 births). Had the U.S. infant mortality rate
6 • Healthy Children: Investing in the Future

Figure 1-1 .—U.S. Infant Mortality Rates

by Race, 1968-85

40 r

0

68 69 70 71 72 73 74 75 76 77 78 79 80 81 82 83 84 85

Year

All races

White

Black

SOURCE Office of Technology Assessment, 1988, based on U.S. Department of

Health and Human Services, Public Health Service, National Center

for Health Statistics, Hyattsville, MD, unpublished data from U S vital

statistics, 1986

continued to decline after 1981 at the rate predicted by NCHS on the basis of previous trends,

the United States would have suffered about 2,630

fewer infant deaths in 1985 than were actually reported.

No single explanation is sufficient for why the

U.S. infant mortality rate began to level off in the

early 1980s and continues to do so into the

present. But the key to the slowdown puzzle appears to be the deteriorating U.S. birthweight

distribution-especially the increase in the number

of live births recorded in the lowest birthweight

categories. In 1980, low birthweight infants represented less than 7 percent of all newborns in the

United States but accounted for 60 percent of all

babies who died in infancy (687).

Progress in reducing infant mortality rates can

come through two routes:

1. changes in birthweight-specific infant mortality rates, and

2. changes in the distribution of birthweights

toward heavier babies.

Historically, most of the progress in the United

States since 1960 has been via the first route. In

fact, between 1960 and 1980, about 91 percent of

the improvement in the U.S. infant mortality rate

was due to changes in birthweight-specific mortality rates (80). In recent years, U.S. birthweightspecific mortality rates have continued to improve, in large measure as a result of rapid advances in the technology of neonatal intensive care

(665). Neonatal intensive care units (NICUs) offer sophisticated monitoring and therapy to premature infants whose undeveloped lungs do not

function properly. The 1970s saw rapid advances

in respiratory therapy techniques and improvements in mechanical ventilation, which had a major impact on the survival of premature infants

with respiratory distress syndrome. In the 1980s,

continued improvements in outcomes have occurred in very low birthweight infants (those under 1,500 grams or 3 lbs. 5 oz.), with the greatest

improvement in the 750- to 1,000-gram birthweight group (665).

While U.S. birthweight-specific mortality rates

have improved in the 1980s, the reported birthweight distribution in this country has actually

deteriorated. Between 1977 and 1984, the percentage of live births at normal birthweights (greater

than 2,500 grams) increased slightly, but the distribution of low birthweight infants shifted toward

the lowest birthweight intervals (those under 1,000

grams or 2 lbs. 3 oz.). Had U.S. birthweightspecific mortality rates not improved in this

period, the deteriorating birthweight distribution

would have resulted in an increase in the overall

U.S. infant mortality rate (339).

Ironically, the success of NICUs in improving

outcomes of the larger very low birthweight babies may be partly responsible for the reported

deterioration of the birthweight distribution. As

the frontier of viability has been pushed back to

smaller and smaller babies, obstetricians and neonatologists may be more frequently resuscitating the very tiniest newborns, even those under

500 grams, despite the fact that very few of these

infants will survive. The increased concentration

of high-risk births in sophisticated regional perinatal centers and ethical concerns arising from the
Chapter l—Summary and Policy Options ● 7

—

“Baby Doe” controversy may also be contributing to higher rates of resuscitation.

In addition to more aggressively resuscitating

the tiniest newborns, U.S. hospitals today may

be more careful to report as live births what in

the past might have been reported as fetal deaths

or have gone unreported altogether. Greater

awareness of State birth reporting requirements

and legal and economic considerations may be influencing reporting practices (210,755).

Other factors may also have contributed to the

slowdown in improvement, although available

evidence suggests that their impact would be modest. Such factors include the natural maturation

of technologies for neonatal intensive care that

diffused widely in the mid-1970s and that are now

improving outcomes of the smallest birthweight

babies; the completion of the process of diffusion

of abortion services in the late 1970s that may

have differentially reduced birth rates in women

at high risk for infant mortality, such as very

Whatever the reasons, the number of reported young teenagers and unmarried women (610); the

live births under 500 grams in this country in- increase in the percentage of infants living in povcreased much more rapidly in the 1980s than did erty; and deterioration in real dollars in the availlive births at all other birthweights (699,704,709). ability of subsidized health care services for pregThe vast majority of newborns under 500 grams nant women and children.

die in infancy; thus, an increase in the reported

number of live births in this category would have

the effect of pushing up U.S. infant mortality

rates.

In fact, OTA calculated that if the number of

live births under 500 grams had increased between

1977 and 1984 only as fast as the number in the

other low birthweight categories, the U.S. infant

mortality rate in 1984 would have been 10.4 rather

than the reported rate of 10.8 per 1,000 live

births. ’ The slowdown in the rate of change in

U.S. infant mortality would have been much less

apparent without the excess births in the under500-gram” category: the average annual rate of decline in U.S. infant mortality rate would have

been 4.4 percent (rather than the reported rate of

4.1 percent) from 1977 to 1981 and 4.1 percent

(rather than the reported rate of 3.3 percent) from

1981 to 1984. Thus, a large part of the slowdown

in improvement in the U.S. infant mortality rate

in the early 1980s may be a reflection of changing management and reporting of very premature

deliveries rather than a real deterioration in the

health of pregnant women.

‘Following the birth of Baby lane Doe (an infant born with mutlple birth detect~ I Federal regul~tit>ns were writtc’n t{) requlrc that

h[~spltals treat wverclv handicapped infant~ ok”er the (~b}e~tl(~ni ot

the]r parents Those regulations were later declared uncon+tltutional

b} the Supreme Court.

40TA as~umed for this a nal}’sls that all u nder-5M-~ra m II\Te blrt hs

died I n i n la nc~’ Onlv a tern’ SLI ch babiw ha i’e su rvl~’mi t [~ date

The coincidence of increasing poverty among

infants in the early 1980s and decreased real

spending on publicly subsidized health services

in this country is particularly disturbing. From

1978 to 1984, the percentage of infants residing

in poor families rose from about 18 to 24 percent.

During this period, Medicaid expenditures in constant dollars per child recipient declined by 13 percent (278) and Federal funding for three important sources of primary health care for poor

women and children—maternal and child health

services, community health centers, and migrant

health centers—declined in constant dollars by 32

percent (40,117,394).

Together, these trends suggest that more pregnant women and infants encountered severe financial obstacles to obtaining timely health care

services in the early 1980s than in the late 1970s.

Any resulting deprivation would be expected to

have only a modest effect on the overall U.S. infant mortality rate, because relatively few women

and infants would have been newly affected by

the poverty and cutbacks and infant mortality is

still a rare event. Yet, for a particular infant, being born to a mother in poverty with limited access to prenatal and infant care substantially raises

the risk of dying in the first year. Thus, cutting

back on funding for health care services at the

same time that infant poverty rates in this country were increasing raised the risks of infant mortality for these babies.
8 • Healthy Children: Investing in the Future

PREVENTING LOW BIRTHWEIGHT

The United States invests a great deal in the

treatment of low birthweight babies and realizes

considerable success. Neonatal intensive care has

played a major and definitive role in the improved

survival of low birthweight and premature infants

since its introduction in the 1960s.5 Each year,

about 150,000 to 200,000 infants (from 4 to 6 percent of all U.S. newborns) are admitted to NICUs.

At least one-half of these infants are low birthweight babies. Without question, neonatal intensive care is effective and becoming more effective

over time. In 1960, 72 percent of all very low

birthweight infants (1,500 grams or less) born in

hospitals with sophisticated NICUs died in the first

28 days of life; by the early 1970s, the percentage had dropped to 54, and by the early 1980s,

it had declined to 27 percent (665).

Although NICU care is effective, it is also expensive, ranking among the most costly of all hospital care. The effort to reduce the dependence

of low birthweight babies on this expensive technology adds urgency to the search for strategies

to prevent the need for NICU care in the first

place.

Prenatal Care

Prenatal care encompasses a wide range of

preventive, diagnostic, and therapeutic services

delivered throughout the course of pregnancy,

with the goal of both a healthy baby and a healthy

mother. Preventive components of prenatal care

include screening for potentially harmful conditions in the mother and fetus, education and counseling, and sometimes nutritional supplements.

Diagnostic and therapeutic interventions represent responses to and followup of problems identified either through symptoms or screening.

Because prenatal care includes not only preventive interventions such as screening and counseling but also treatment when needed, it is bound

to be effective in altering the health of some

mothers and infants. Treatment of gestational diabetes or hemolytic disorders, for example, is crit-

‘For detailed information on the effectiveness and costs of neonatal

intensive care, see OTA’S 1987 case study Neonatal Intensive Care

tor Low Birthneight Infants: Costs and Effectiveness (665).

Photo credit. Yale University and March of Dimes Birth Defects Foundation

Questions remain about exactly which preventive

measures in prenatal care are effective and at what

intervals in the course of a normal pregnancy they are

most effectively applied. Ultrasound examination is not

currently recommended by the American College

of Obstetricians and Gynecologists for

routine use during pregnancy.

ical to healthy outcomes for both mother and infant. The real question of effectiveness is not

whether prenatal care makes any difference to

child health, but exactly which preventive

measures—monitoring, screening, education and

counseling, or nutritional supplements—are effective and at what intervals in the course of a normal pregnancy they are most effectively applied.

Various new techniques of prenatal care are being developed, and evidence needs to be gathered

to ensure their appropriate use in the care of pregnant women. One technique for which evidence

is only now accumulating, for example, is called

“ambulatory tocodynamometry.” Its place in

monitoring women at high risk for premature delivery is still undetermined.

Effectiveness

The earlier that prenatal care is initiated, the

more frequent the number of scheduled visits, and

the more screening procedures that are performed,

the more expensive prenatal care becomes. If frequent routine visits and procedures do not offer

any advantages in terms of lowering risks of premature labor, allowing more effective treatment
Chapter 1—Summary and Policy Options ● 9

or better management of labor and delivery than

does seeking care when symptoms develop, the

value of such preventive care would be dubious.

OTA examined the evidence on the effectiveness of early initiation of and more frequent

prenatal care visits in reducing the rate of low

birthweight and neonatal mortality. Despite serious shortcomings in almost all studies of prenatal care, the weight of the evidence from more

than 55 studies of the effectiveness of earlier, more

frequent, or enriched prenatal care services supports the contention that two key birth outcomes

—low birthweight and neonatal mortality—can

be improved with earlier and more comprehensive prenatal care, especially in high-risk groups

such as adolescents and poor women. Although

the evidence clearly supports the effectiveness of

prenatal care, it is less revealing about the size

of the effect that should be expected from increasing the quality or quantity of prenatal care received by any segment of the population.

Cost-Effectiveness of Expanded

Prenatal Care for Poor Women

If prenatal care can improve birth outcomes,

the logical next question is whether a specific strategy to increase access to effective services is worth

its costs. The Omnibus Budget Reconciliation Act

of 1986 (Public Law 99-509) gave States the authority to make a new group of previously ineligible pregnant women eligible for Medicaid—those

whose incomes fall above the State’s standards for

Aid to Families With Dependent Children (AFDC)

but below the Federal poverty level. Since April

1987, States have had the option of selecting any

income standard for extending Medicaid eligibility to pregnant women, provided the standard is

below the Federal poverty line.’ By January 1988,

26 States had exercised their option to expand

Medicaid eligibility to include more pregnant

women in poverty.

OTA performed a cost-effectiveness analysis to

determine how costs to the U.S. health care system (not just to Medicaid) would be affected by

“The Omnibus Budget Reconciliation Act of IQ87 (OBI<A-87J

passed by Congress in December 1 Q87 ( Public Law 100-203 ~ ~a~’e

States even greater freedom to expand eligibility for Medicaid to

pregnant women with incomes up to 185 percent of the Federal po\’-

ert}r line

a policy of universal eligibility for Medicaid of

all pregnant women in poverty. Under such a policy, approximately 194,000 pregnant women

would be newly eligible for Medicaid coverage,

but almost 60 percent of these women already

have some form of private health insurance coverage. Overall, OTA estimated that offering Medicaid eligibility to all pregnant women in poverty

would cause an additional 18.5 percent of women

in this category to initiate early prenatal care (i. e.,

care in the first trimester of pregnancy). Nationally, the extra prenatal care would cost about $4

million per year.7

OTA estimated that for every low birthweight

birth averted by earlier or more frequent prenatal care, the U.S. health care system saves between

$14,000 and $30,000 in newborn hospitalization,

rehospitalization in the first year, and long-term

health care costs associated with low birthweight

(see table 1-2).

How effective would earlier prenatal care have

to be for the extra prenatal care costs among

newly eligible women—estimated at $4 million—

to be outweighed by the societal savings resulting from a reduction in the rate of low birth-

‘Note that these extra costs of prenatal care do not represent the

additional costs to Medicaid of providing e] igib ility, nor do they

represent the full costs of prenatal care for the newly e] igible women.

They represent the additional costs associated with the new care

initiated as a result of enhanced e] igibility. The extra costs to h~edicaid might be much higher, since Medicaid would probably be paying for care that previously had been paid for by patients and their

families or been donated by other government agencies, providers,

or philanthropic groups.

Table 1-2.—Net Incremental Health Care

Costs of a Low Birthweight Birth

Low-cost H i gh-cost

estimate estimate

Initial hospitalization cost:

. Hospital costs . . . . . . . . . $ 3,763 $ 5,236

. Physician costs . . . . . . . . 475 1,487

Total . . . . . . . . . . . . . . . $ 4,238 $6.723

Rehospitalization costs in

first year (hospital costs

only) . . . . . . . . . . . . . . . . . . $ 802 $ 802

Long-term costs of treating

low birthweight . . . . . $ 9,000 $23,000

Total net incremental

costs . $14,040 $30,525

SOURCE Off Ice of Technology Assessment 1988
10 . Healthy Children: Investing in the Future

weight? OTA estimated that the expansion of

eligibility for prenatal care benefits under Medicaid would have to prevent between 133 and 286

low birthweight births among the 194,000 new

eligibles for the societal health care savings to outweigh the costs. If these women began with a low

birthweight rate of 10.2 percent,8 the low birthweight rate in the target population would have

to decline by between 0.07 and 0.20 percentage

points for health care costs to break even.

The reduction in low birthweight births would

be concentrated in the group of poor women

whose use of prenatal care changed as a result of

the expanded eligibility for Medicaid. Among

these new users, the low birthweight rate would

have to decline by between 0.4 and 0.8 percentage points to between 9.4 and 9.8 percent.

Is it reasonable to expect reductions of this magnitude in the low birthweight rate? The evidence

on the impact of earlier prenatal care on birthweight suggests that such reductions are quite feasible. The quantitative results of several reasonably well-designed studies of the effect of earlier

prenatal care on birthweight showed effects that

were at least twice as great as the effects required

for the expansion of Medicaid eligibility to pay

for itself in reduced health care costs (149,311,569,

600). That early prenatal care can also be expected

to prevent some infant deaths (though the number cannot be predicted with certainty) further enhances the strategy’s cost-effectiveness. Encouraging poor women to obtain early prenatal care

through expanded Medicaid benefits is a good investment for the Nation.

Comprehensive School-Based Clinics

for Teenagers

One approach to reducing the U.S. infant mortality rate and low birthweight would be to give

women at high risk of poor birth outcomes better opportunities to avoid unintended pregnancies (296). Teenagers and women age 35 and

above have a higher risk than other women of

having babies that die in the first 28 days of life

and that weigh 2,500 grams (5 lbs. 8 oz. ) or less

‘The low birthweight rate is defined as the percentage of live births

with a birthweight of less than 2,500 grams.

at birth.9 Similarly, women who have not graduated from high school are at greater risk of experiencing these poor birth outcomes than women

with at least a high school education.

In 1984, over 1 million teenagers in the United

States became pregnant. About 40 percent of these

pregnancies ended in abortion and 13 percent

ended in miscarriage (443), so the number of

births to teenage mothers in this country in 1984

was about 470,000 (443). The vast majority of

teenage pregnancies are not only unintended but

unwanted once they occur. In 1979, 82 percent

of unmarried teenagers who became pregnant in

the United States reported that the pregnancy was

unwanted, but of unmarried teenagers who did

not want their pregnancy, only 32 percent used

contraception (443).

Strategies for preventing teenage pregnancy

span a wide range of philosophies, from programs

that are intended to influence teenagers’ attitudes

about sexual behavior and relationships to programs that prescribe or dispense contraceptive

services (443,652a). There is tentative evidence

that comprehensive school-based clinics that offer contraceptive services (as well as other kinds

of health care) can lower teenage pregnancy rates

and avoid unwanted births. Not all school-based

clinics located in high schools and junior high

schools offer family planning services. Of those

that do, only a few actually dispense contraceptives. Some clinics prescribe contraceptives, and

many others refer students to other providers.

The effectiveness of school-based clinics in preventing pregnancies and births among adolescents

has been examined at two programs to date, one

with three sites in St. Paul, Minnesota (147,333),

and the other located in Baltimore, Maryland

(777). Studies of the St. Paul school-based clinic

program suggested that the program was successful in reducing birth rates among female students

(147,333). The Baltimore school-based clinic program appears to have prevented pregnancies and

reduced levels of sexual activity among students

receiving services (777).

9Except for very young teenagers (those under 15 years of age),

the relationship between age and neonatal mortality is a reflection

of other factors, such as poverty, poor health care, or risky behaviors, that tend to cluster in adolescent mothers.
.

Chapter l—Summary and Policy Options ● 1 1

. .

Although it is premature to draw conclusions per year per student (443). As more evidence on

about the effectiveness of school-based clinics in the effectiveness of school-based clinics in reducreducing high-risk unwanted pregnancies in ad- ing rates of teenage pregnancies and births acolescents, the evidence accumulated to date does cumulates, study of whether such clinics can yield

look promising. The costs of providing compre- net savings to the U.S. health care system will be

hensive school-based health services is about $125 warranted.

PREVENTING HEALTH PROBLEMS IN EARLY CHILDHOOD

Once a baby is born, various preventive strategies are available to promote his or her health

during infancy and beyond. OTA assessed the effectiveness or cost-effectiveness of interventions

in four general categories: newborn screening for

congenital disorders, well-child care, prevention

of accidental injuries, and prevention of child

maltreatment.

Newborn Screening for

Congenital Disorders

The screening of large populations of newborns

for congenital disorders began as a public health

activity in 1961 with screening for phenylketonuria (PKU). PKU, an inherited disorder of metabolism, occurs in about 1 in 10,000 to 1 in

15,000 infants. The development of a newborn

screening test permitted its detection in the first

week of life, so that treatment could begin before

2 to 4 weeks of age, thus avoiding the irreversible mental retardation that would otherwise

occur.

Today, newborn screening for PKU and congenital hypothyroidism is conducted in all 50

States and the District of Columbia. Tests for various other congenital disorders are also offered in

some States, including tests for homocystinuria,

galactosemia, maple syrup urine disease, sicklecell anemia, cystic fibrosis, biotinidase deficiency,

and congenital adrenal hyperplasia.

In general, the disorders included in routine

newborn screening programs are diseases that are

present throughout the life of an affected individual, do not get better (and often worsen) with

time, and can result in severe mental retardation,

physical disabilities, and even sudden death if untreated in the first days or weeks after birth. Although only a few disorders are in this category

and those are relatively rare, newborn screening

followed by early and sustained treatment can

make the crucial difference in affected infants.

Effectiveness

The effectiveness of newborn screening in identifying affected infants depends in part on the accuracy of the test itself; it also depends on the ability of the screening program to collect blood

specimens from all infants and to perform the tests

properly and in time to initiate treatment. Thus,

the organization and management of newborn

screening services, the timing and number of newborn blood specimens, and laboratory performance have major bearing on the effectiveness of

newborn screening.

The United States and Canada are the only developed countries offering newborn screening that

do not have a national screening program. In the

absence of a national newborn screening program

or national set of minimum standards, each State

has taken a slightly different approach to providing screening services. A few States have joined

with neighboring States to form regional programs (279), Most States have their own newborn

screening programs; State programs usually do

have a centralized screening laboratory, but many

do not have an organized program of services

linking the laboratory with followup, treatment,

and monitoring. A few States operate without a

central laboratory or a centrally organized program. These States rely on an informal network

of individual families, physicians, and a combination of public and private laboratories to provide screening and followup.

In some areas, the lack of a coordinated network of newborn screening services may reduce
12 . Healthy Children: investing in the Future

the overall effectiveness of newborn screening by

putting infants at risk for not being screened or

for not receiving appropriate treatment. There are

no national data on the number of infants at risk,

however, because there is no central system for

collecting comprehensive data with which to monitor and compare the outcomes of newborn

screening in the State and regional programs.

Cost-Effectiveness of Newborn Screening

Although the value of newborn testing in the

hospital for PKU and congenital hypothyroidism

is now widely accepted, there is substantial question about the appropriateness of testing for other

conditions and about the need for a routine second blood specimen at around the third week of

life to pick up cases that might have been missed

on the first screen. The second specimen issue has

gained importance in recent years as the trend

toward early hospital discharge of newborns has

increased the probability that some affected infants will be missed. (In 1985, about 42 percent

of all newborns were discharged before 3 days,

up from 31 percent in 1980, and the optimal age

for PKU testing is 3 to 5 days after birth. ) Concern over the adequacy of the test in blood specimens taken within 24 hours of birth (282,283,409)

led the American Academy of Pediatrics (AAP)

Committee on Genetics to recommend that all infants whose first sample was collected before 24

hours after birth have a second blood sample

taken by the third week of life.

OTA performed a cost-effectiveness analysis

comparing a basic screening strategy—one specimen taken in the hospital to test for PKU and congenital hypothyroidism—to no screening and to

six expanded strategies. The six expanded strategies involve a second specimen or additional tests

on a single specimen.

Newborn screening for PKU and congenital

hypothyroidism using one specimen reflects the

minimum situation common to all U.S. newborn

screening programs. Compared to no screening,

this basic screening strategy not only saves many

infants (about 1,291 per year) from lifetimes of

severe disability but also yields net savings for the

U.S. health care system of about $120 million per

year. Each of the six expanded screening strategies would save more babies from deadly or disabling diseases than the basic strategy (ranging

from 50 to 160 infants nationwide per year, depending on the strategy), but the incremental costs

of achieving those extra successes are high (see

table 1-3).

The net health care costs per case detected by

any of the expanded newborn screening strategies

remain high even under the “best case” assumptions applied in a sensitivity analysis. OTA found,

however, that under the best case assumptions,

the cost of detecting an extra case via an expanded

one-specimen strategy—to test for PKU, congenital hypothyroidism, galactosemia, and maple

syrup urine disease—is about $85,000. Thi s

amount would buy an entire lifetime for a child

with one of these disorders and is low compared

to the cost of many therapies currently considered accepted medical procedure. The cost (in

1986 dollars) per year of life gained from heart

transplantation for congestive heart failure, for

example, is about $28,000 (162) to $40,000 (98),

and for a year gained from hemodialysis for endstage renal disease is about $36,500 (530).

Four congenital disorders not included in the

screening strategies examined in OTA’s costeffectiveness analysis—sickle cell anemia, cystic

fibrosis, biotinidase deficiency, and congenital

adrenal hyperplasia--are being considered for inclusion in an increasing number of newborn

screening programs. Newborn screening for sickle

cell anemia, in particular, is gaining widespread

support as a result of recent evidence linking early

detection and treatment of the disease with reduced mortality in the first few years of life (198).

OTA did not evaluate tests for these four disorders in its cost-effectiveness analysis, because

reliable data on the long-term value of screening

for these disorders do not exist. Few evaluations

of the sensitivity and specificity of the screening

tests and of the long-term value of early detection and treatment of sickle cell anemia, cystic

fibrosis, biotinidase deficiency, or congenital adrenal hyperplasia have been conducted. In the absence of more data on effectiveness, estimates of

the cost of screening and treatment, not to mention costs averted by screening, would be incomplete at best.
Chapter l—Summary and Policy Options • 13

— —

Table 1-3.— Incremental Effectiveness and Health Care Costs of Six Expanded Newborn Screening Strategies

Compared to a Basic One-Specimen, Two-Test Strategya (1986 dollars)

Number of extra cases Net incremental cost

detected in the per extra case detected

Expanded strategy United States and treated

Two specimens: on first specimen, test for PKU and CH; on -

second specimen, repeat test for PKU and CH in all infants . . . 75 $466,000

Two specimens: on first specimen, test for PKU and CH; on

second specimen, test for PKU and CH only in infants with first

specimen collected less than 72 hours after birth . . . . . . . . . . . 49 $253,000

Two specimens: on first specimen, test for PKU and CH; on

second specimen, test for CH only in all infants . . . . . . . ., . . 64 $432,000

Two specimens: on first specimen, test for PKU and CH; on

second specimen, test for PKU, CH, and HC in all infants . . . . . 94 $421,000

One specimen: test for PKU, CH, GA, and MSUD . . . . . . . . . . . . . . . . 68 $173,000

Two specimens: on first specimen, test for PKU, CH, GA,

and MSUD; on second specimen, test for PKU, CH, and HC

in all infants . . . . . . . . . . . . . . . . . . . . . , . . 162 $317,000

Abbrevlat!ons PKU phenylketonurla, CH = congenital hypothyroldfsm, HC - homocystlnur!a, GA = galactosemla, MSUD = maple syru D urine disease

aThe ba~l~ newborn screening strategy to which the expanded strategies in th!s table are compared IS a one.specimen Strategy with tests for phenylketonur!a (p KU)

and congenital hypothyroidism (CH)

SOURCE Office of Technology Assessment 1988

Well-Child Care

Well-child care refers to a variety of preventive health services offered by physicians or other

health professionals at defined points in a child’s

life, beginning as early as the second or third week

after birth and extending into adulthood (227).

The goal of well-child care is ultimately to improve the physical, cognitive, and psychological

health of children both in childhood and

adulthood.

Well-child care encompasses two main aspects

of prevention:

● immunization; and

• health supervision, consisting of physical examinations and other tests that screen for illness or developmental problems, health education, and parental guidance.

Immunization

Immunization provides the starkest example of

the power of prevention to save or prolong lives,

prevent significant disability, and lower medical

care costs. It represents the ideal of medical

progress—prevention rather than cure or relief of

symptoms (642). Today, children in the United

States are routinely vaccinated against eight diseases: diphtheria, tetanus, pertussis (whooping

cough), polio, measles, mumps, rubella (German

measles), and, most recently, Haemophilus influenzae b (Hib).

The cost-effectiveness of the childhood vaccines

is well established in the literature—indeed, such

vaccines not only confer medical benefits but are

cost-saving. The diptheria, tetanus, and pertussis (DTP) vaccine—the most controversial vaccine—continues to be cost-saving, despite a rapid

rise in vaccine prices due to the recent vaccine liability crises. As vaccine prices increase, however,

costs saved with childhood immunization programs diminish. Thus, developments with regard

to the current vaccine liability crisis will have an

impact on whether childhood immunizations continue to be cost-saving.

New technologies on the horizon also will have

an impact on the cost-effectiveness of childhood

immunizations. Two new DTP vaccines developed by the U.S. National Institutes of Health and

Japanese researchers could substantially reduce

the number and seriousness of adverse reactions

to the pertussis component of the DTP vaccine.

A reduction in adverse reactions could decrease

the amount of corresponding litigation and ultimately reduce vaccine prices.
14 . Healthy Children: Investing in the Future

Photo credit: Children Hospital National Medical Center

Well-child care comprises physical examinations and

tests that screen for illness or developmental problems,

immunization against polio and other diseases, health

education, and counseling of a child’s parents.

Health Supervision

Evidence on the effectiveness of components of

well-child care other than immunization is more

remarkable for its limitations than for its findings.

No evidence supports the contention that wellchild care other than immunization significantly

influences mortality or morbidity among children

or that it enhances the development of a child’s

social competence. On the other hand, sample

sizes have been uniformly too small and followup

too brief to identify mortality changes; the available measures of childhood morbidity have been

inadequate, and most investigators have not even

looked at children’s developmental outcomes. The

particular importance of the outcome measures

examined to date and their duration of impact

have not been evaluated. For these reasons, expert opinion and good intentions rather than scientific data currently guide the provision of wellchild care. Participation in well-child care does

seem to provide substantial satisfaction to both

parents and providers, and the value of their satisfaction should not be overlooked.

Of the components of well-child care examined

by OTA, childhood immunization for eight diseases is the only one shown to be cost-effective

and cost-saving. A schedule of well-child care

visits that corresponds to the AAP’s and Immunization Practices Advisory Committee’s recommended schedule for childhood immunization,

therefore, is cost-saving. Such a schedule would

include seven well-child care visits for normal infants and children in the first 6 years of life. The

schedule for well-child care visits recommended

by AAP calls for 13 visits in the first 6 years of

life. Whether more well-child care visits than

the seven required for childhood immunizations

would be cost-effective is unknown, because researchers have yet to be able to document the effectiveness of the health supervision aspects of

well-child care in terms of improved health outcomes. In formulating recommended schedules for

well-child care visits, AAP and other recommending bodies have relied on expert opinion regarding the effectiveness of the components of wellchild care other than immunization (284).

Preventing Accidental

Childhood Injuries

Accidental injuries are the leading cause of

death in American children after the first few

months of life.10 In 1984, 7,850 U.S. children under age 15 died as a result of such injuries (713).

Nationally, approximately 353,000 hospitalizations and nearly 10 million emergency treatments

‘“TO describe accident~l injuries, many people prefer the label

“unintentional injuries” because they believe that the term “accidental” implies unavoidability OTA has chosen to use the term accidental injuries for two reasons. One is that it is the term more

commonly used by the general public. The other is that many researchers in the field of ch]ld abuse argue that the term unintentional injuries does not in tact exclude all injuries due to child abuse,

because some child abuse 1s unintentional.
Chapter 1—Summary and Policy Options ● 1 5

annually are due to childhood injuries. Approxi- cline in motor-vehicle occupant deaths among

mately 4,700 children under age 17 experience children under age 5 between 1980 and 1984

bed-disabling injuries each year (705). (234,713).

Childhood accidents are very costly to American society, even after the tremendous social and

emotional costs of death and disability are excluded. NCHS estimated that in 1980, injuries and

poisonings (accidental and nonaccidental) accounted for 13.3 percent of acute medical care

costs for U.S. children under age 17, or nearly

$2 billion (479). Most of this cost, which does not

include long-term care costs or nonmedical costs,

is probably due to accidental injuries. As a group,

accidental and other injuries are the leading cause

of potential years of life lost before age 65 (685).

In infants under age 1, injuries are the second leading cause of death (after death due to conditions

present at birth); and in all other children under

age 15, they are the leading cause of death (451).

In 1984, the greatest number (43 percent) of the

accidental fatalities in children under age 15 resulted from vehicle-related accidents. Drowning

and fires/burns were also prominent causes of

death among children in this age group.

There are three broad strategies for preventing

accidental childhood injuries:

• Persuasion/education: persuading people to

increase their self-protection (e. g., through

education or reminders to use seatbelts).

● Regulation of behavior: requiring people to

increase their self-protection (e. g., by passing laws requiring the use of seatbelts).

● Automatic protection: providing automatic

protection from injury through product or

environmental design (e. g., by designing automobiles so that a person is automatically

seatbelted when in the vehicle) (451,531).

For motor-vehicle-related injuries in children,

both regulation and automatic protection have

been very effective in reducing deaths (and, presumably, serious injuries as well). In 1977, Tennessee passed the first State law requiring children

to be restrained in an infant or child seat. By 1984,

all 50 States had enacted laws requiring the use

of safety restraints for children in automobiles

(29). These laws contributed to the 36-percent deStill, there is considerable room for improving

child safety restraint laws. Many States require

safety restraints in automobiles only for very

young children. Altogether, 38 States have no restraint requirements for children over age 5 (and

many States do not require restraints for children

over 3 or 4) (719). Laws covering only certain ages

and exempting certain vehicles may fail to prevent a substantial number of avoidable deaths.

One analysis of motor-vehicle occupant fatalities

in very young children (ages 0 to 5) concluded

that in some States, up to 43 percent of deaths

occurred in children who would not have been

covered under restraint laws as of 1984 (636).

The evidence regarding the role of enforcement

in improving the effectiveness of safety restraint

use is somewhat conflicting. A few studies of specific enforcement efforts have found that such efforts had little additional effect (535). One study

of seatbelt use found, however, that Texas had

the highest rate of compliance in the Nation, a

rate which Texas authorities attributed to vigorous enforcement efforts (518).

Automatic protection has also played an important role in the reduction of motor-vehiclerelated childhood injuries. Attempts to reduce automobile injuries have included both product and

environmental changes. The Motor Vehicle Safety

Act of 1966 (Public Law 89-563) required automakers to include certain safety features in 1968

and subsequent model cars, such as shoulder belts,

energy-absorbing steering assemblies, and interior

padding. Reductions in automobile-associated

deaths observed into the 1980s can probably be

attributed in part to the continued attrition of

old vehicles that did not meet the standards. The

effect of the standards on death rates of children

alone has not been estimated.

Other possibilities for improvement also remain. For example, many vehicles still have protrusions such as knobs and tapered dashboards

that can cause injury to the faces, heads, and

chests of individuals during crashes or sudden

braking (752). One study found that 12 percent
16 ● Healthy Children: Investing in the Future

of children’s injuries in motor vehicles occurred

in noncrash braking or swerving (4).

Although education programs designed to encourage families to use child safety restraints in

automobiles have met with only modest success

(522,523), education may be an important component of regulatory strategies, both in encouraging the legislative process and as a necessary background to acceptance and proper use of required

technologies (177).

For accidental childhood injuries not involving

motor vehicles, similar conclusions can be drawn.

Automatic protection is most effective and regulation is often effective in reducing accidental injury rates, especially when accompanied by

educational campaigns. Examples of actions that

could together substantially reduce children’s

deaths due to accidental injuries include:

●

●

●

●

●

●

●

helmets for bicyclists,

barriers around swimming pools,

universal use of smoke detectors,

window bars in windows above the first

floor,

hot water heater temperatures of no more

than 120 degrees Fahrenheit,

stringent limits on the sales and use of allterrain vehicles, and

“no-right-turn-on-red” laws,

It must be remembered, however, that many of

these preventive interventions involve additional

costs to society or substantial loss of personal

choice, issues that need to be taken into account

when considering accident prevention policies.

Preventing Child Maltreatment

Child maltreatment—including physical, psychological, and sexual abuse and neglect—is an

especially troubling children’s health problem because it is caused primarily by adult behavior, not

by accidents or natural disease processes. In the

past two decades, there has been an explosion of

concern in professional and lay communities

about the problem, but policy debates regarding

appropriate responses are hindered by the lack of

consensus about what constitutes maltreatment,

what causes it, how frequently it occurs, and,

most important, how it can be prevented.

All 50 States and the District of Columbia have

laws defining child maltreatment and mandating

that professionals working with children report

suspected cases. Typically these laws are vague,

leaving a good deal open to interpretation. State

child protection agencies, which are designated

by law to respond to reports of alleged child maltreatment, typically have a higher threshold for

identifying a case as abuse or neglect than health

care professionals have (143). For example, a

pediatrician might consider corporal punishment

of a child to be abusive and decide to counsel a

child’s parents about alternative disciplinary strategies. A social worker for a State child protective service agency, on the other hand, might require scattered bruising to substantiate a case

report.

The lack of clear definitions of child maltreatment complicates attempts to estimate the frequency with which maltreatment occurs, but even

clear definitions would not make measurement of

the size of the problem easy. The unacceptability of child maltreatment and its potential legal

consequences makes conventional methods of estimating incidence and prevalence (e. g., population-based surveys or incident reporting) unreliable. The more serious the maltreatment, however,

the more likely are reporting systems to identify

incidents. In 1985, 1.9 million cases of child maltreatment were reported to child protective services agencies in the United States (657). A 1986

survey of child protection agencies estimated that

at least 1,200 children died of child abuse in that

year (448).

Few child maltreatment prevention programs

have been rigorously evaluated to ascertain their

short-term and long-term outcomes. Between 1979

and 1981, the National Center on Child Abuse

and Neglect (NCCAN) sponsored a national evaluation by Berkeley Planning Associates of 19

NCCAN-funded clinical demonstration projects

(56). The 19 federally funded projects were intended to demonstrate the effects of specialized

clinical treatments in five abuse and neglect subpopulations (sexual abuse, adolescent maltreatment, substance-abuse-related maltreatment, child

neglect, and remedial services to maltreated children). The evaluation methodology was critically

flawed, lacking in comparison groups or in ob-
Chapter I—Summary and Policy Options . 19

rates of participation, and their participation rates

increased slightly in the period between 1978 and

1984. The increase may be due to factors unrelated

to payment, in particular, the increase in the supply of pediatricians during the period. Despite

these trends, continued stringency in Medicaid

payment rates can only put more pressure on children’s access to private physicians in the future.

Finally, administrative red tape and payment

delays not only slow down the Medicaid enrollment process but also discourage private providers

from participating in the program. The net result

is that in many areas, children eligible for Medicaid must seek care at clinics that specialize in

care for the indigent or at hospital emergency

rooms.

CONCLUSIONS

Fortunately, most children in the United States difficulty and usually at higher costs than the last

enjoy excellent health, but this assessment dem- because the remaining problems, by definition,

onstrates that greater strides toward improvement are more intractable. It is the familiar phenomein their well-being are still possible if more em- non of diminishing returns, with one vital differphasis is placed on cost-effective prevention strat- ence: virtually no new gain can be dismissed as

egies. As the same time, a reality must be recog- unimportant if it promises some real reduction of

nized in any effort to employ such strategies. infant mortality and other forms of suffering.

Every inch of ground gained is won with greater

OPTIONS FOR FEDERAL POLICY

OTA has identified several preventive strategies for improving American children’s health,

some of which would be clearly cost-saving to the

U.S. health care system, some of which are effective (though not cost-saving), and some of

which hold promise of having important impacts

on children’s health:

. improved access to early prenatal care for

poor women (cost-saving);

● comprehensive school-based clinics for adolescents at high risk of unwanted pregnancy

(promising);

• newborn screening using a single blood specimen to identify four congenital disorders

(PKU, congenital hypothyroidism, maple

syrup urine disease, and galactosemia) (effective);

. well-child care as often as required for full

immunization of young children (seven visits

in first 6 years of life) (cost-saving);

. use of child safety restraints in automobiles

(effective, probably cost-saving);

. nurse home visitor programs for pregnant

women and infants in families potentially at

high risk for low birthweight, childhood accidents, or child maltreatment (promising);

and

Ž improved access to physicians’ services for

children living at or near the poverty level

(effective).

Specific policies for bringing about these improvements are discussed below.

Expanding Access to Prenatal Care

for Poor Women

Option 1: Congress could mandate that eligibility for Medicaid be extended to all pregnant women with incomes below the Federal poverty line.

In the Omnibus Budget Reconciliation Act

passed in December 1987 (OBRA-87) (Public Law

100-203), Congress gave States the power to extend Medicaid coverage to pregnant women with

family incomes up to 185 percent of the Federal
20 ● Healthy Children: Investing in the Future

poverty line.12 States vary widely in Medicaid

eligibility and benefit standards, however, and

there is no reason to think that the variation will

be reduced under a program in which participation is voluntary. So far, only 26 States have

elected to expand Medicaid benefits to all pregnant women in poverty. States may be reluctant

to undertake responsibility for a new eligibility

group, because expanding Medicaid to pregnant

women in poverty will increase Medicaid costs

as Medicaid pays for prenatal care that formerly

was paid for by other State programs with more

Federal matching dollars (e.g., the Maternal and

Child Health services block grant), paid for by

the patients’ families, or provided by physicians

and hospitals without compensation.

Requiring Medicaid coverage of all women with

incomes below the poverty line would ensure equity in eligibility for Medicaid across the States.

This option would raise Medicaid costs, although

it could free some Maternal and Child Health services (MCH) block grant money to be used for

other health needs of children and pregnant women.

In States reluctant to implement this option, its

effectiveness could be undermined through enrollment procedures that delay or make difficult the

determination of Medicaid eligibility.

Option 2: Congress could require States to

shorten the period for determining Medicaid

eligibility for pregnant women and could direct the Federal Medicaid authorities to promulgate simplified eligibility forms and procedures for such women.

In some States, pregnant women who are eligible for Medicaid find it difficult to receive early

prenatal care because of delays in the Medicaid

enrollment process. States have 45 days to process an application for Medicaid, but women may

encounter additional delays when their applications are incomplete or when other problems

arise. Congress could require States to make Medicaid eligibility determinations for pregnant

women a priority and to require less documentation for approval.

12 The 1987 Federal poverty level is $11,203 for a familY Of ‘our

(382).

Photo credit: March of Dimes Birth Defects Foundation

Early prenatal care can reduce the incidence of low

birthweight and the high costs of neonatal intensive care.

Some providers have been reluctant to offer

care to pregnant women in anticipation of their

eligibility for Medicaid because of the fear of

retroactive denial of eligibility and nonpayment

for the services rendered (185). Under OBRA-86

(Public Law 99-509), a “qualified provider” can

provide services to a woman presumed to be eligible and be guaranteed Medicaid reimbursement

for that care even if eligibility is ultimately denied. Qualified providers include health departments, hospitals, and clinics, but not private physicians’ practices. Thus, the presumptive eligibility

clause of OBRA-86 appears to channel pregnant

women who are probably eligible for Medicaid

into sources of prenatal care other than private

physicians. Relaxing the definition of a “qualified

provider” would assure private physicians of some

Medicaid reimbursement even if a woman’s eligibility for Medicaid is ultimately denied; thus, this

change would encourage private physicians to accept poor women for prenatal care.

Encouraging the Development of

Comprehensive School-Based Clinics

for Adolescents

Option 3: The Federal Medicaid program could

direct the States to expand funding for comprehensive school-based health clinics through

Medicaid and its Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program.
Chapter l—Summary and Policy Options ● 1 7

jective measures of effectiveness. Consequently,

this evaluation provides little information regarding the usefulness of the approaches undertaken

by the demonstration programs,

The use of home health visitors to families at

high-risk for child maltreatment has been studied more than any other preventive approach.

Five programs, each of which provided a wide array of services to clients including visits in the

home, have been evaluated (33,34,225,391,471,

586). Although the specific home care services

differed among the studies, four of the five studies

found that home care services were effective in

reducing actual rates of child maltreatment.

Taken together, available evaluations of home

health visitor programs suggest that such programs may be successful in preventing child abuse

and neglect.11 Although it is difficult to specify

at this point what program elements are most important in producing the positive outcomes, the

home visitor model appears to have a number of

practical advantages that enhance its effectiveness,

including reaching parents who lack self-confidence and trust in formal service providers, obtaining a more accurate and direct assessment of

the home environment, linking parents with other

support services, and reminding parents that excessive punishment or neglect of children are not

condoned in our society (470).

1 l\~lsltlng nurses mav also be eftectlve In Increasing birthw’eight

and lowering infant mortality ( Q4, lbQ ).

IMPROVING CHILDREN’S ACCESS TO

EFFECTIVE HEALTH SERVICES

Although this assessment focused largely on Figure 1-2. —U.S. Children’s Medical Visits:

preventive strategies for promoting or maintain- Mean Number of Visits by Family Income, 1980

ing children’s health, a fundamental question

raised in any discussion of children’s health is

whether systematic

children’s access to

OTA’s review of

>

consistent relationship between family income and

children’s use of health care services. Not surprisingly, the higher the family income, the more serv- C

c

ices a child uses. This relationship appears to be

stronger the sicker the child. Very healthy chil- =

dren do not differ widely by income group—they

all see physicians infrequently—but the frequency

with which American children who are sick see

a physician depends very much on their income.

4 -

3.3 visits

3 ●

2 -

1

0

<100 %

2.6 visit

.30 visit

100-1 500/0 150-2000/o

3.6 visits

>200 “/0

Family income as percentage of Federal poverty level

SOURCE Office of Technology Assessment 1988 based on data from J A Butler,

The relationship between family income and

children’s use of health care services is softened

by the availability of health insurance coverage,

so that very poor children, who have access to

Medicaid, are more similar to middle-income children in the frequency of use of medical care than

are other poor or low-income children (see figure 1-2). Indeed, children on Medicaid appear to

have as many general checkups and immunization visits as middle-income privately insured chilW D Winter, J D Singer, et al “Medical Care Use and Expenditure

Among Children and Youth in the United States Analysis of a National

Probability Sample “ Pediatrics 76(4) 495507 1985

dren (except for those enrolled in health maintenance organizations) (45). As might be expected,

having a generous health insurance plan has a

greater effect on the use of medical care for children in poverty than it does for other children.

Poor children whose families pay a large amount

out of their own pockets use much less care than
18 . Healthy Children: Investing in the Future —

do those who receive free care (383). Parents do

not appear to be particularly good at discriminating between visits that are likely to be highly effective and those that are not (383). When parents cut back on visits, they don’t just cut back

on care that is not likely to make much difference

to the course of illness; they reduce in equal measure visits for conditions for which medical care

is highly effective.

Family income and health insurance status influence not only the amount of health care U.S.

children receive but also the site in which they

receive it. Poor children—both those with Medicaid eligibility and those without—are much

more likely to receive care in a health clinic, a hospital emergency room, or outpatient department

than are middle-income children.

The result of these systematic differences in the

frequency of use of services and the site of care

suggests that poor children are treated very differently from nonpoor children by the U.S. health

care system. For poor children, the availability

of adequate health insurance makes a big difference in whether they get care they need; however,

Medicaid eligibility means that poor children are

more likely to obtain medical care at a hospital

or public clinic than in a private physician’s

practice.

OTA estimates that in 1986, between 14 and

19 percent of all American children under 13 years

of age had no health insurance eligibility whatsoever. Children without health insurance are

heavily concentrated among the poor and the near

poor (family incomes between 100 and 150 percent of poverty): 61 percent of all children reported to be uninsured in 1986 were poor or near

poor.

Almost 40 percent of poor children in intact

families have no health insurance. In fact, poor

children in two-parent families are much less likely

to have health insurance than are poor children

living with never married mothers, whose rate of

uninsuredness is at most 16 percent. This difference can be explained by the fact that children

in intact families in poverty have somewhat higher

incomes on average than do those in households

headed by single mothers, making fewer of them

eligible for Medicaid on the basis of income.

The existence of Medicaid is clearly a great benefit for eligible children. As a federally aided,

State-administered program of medical assistance

for low-income people, Medicaid enhances access

to health care for the poor. Because each State

designs and administers its own program within

Federal guidelines, however, the adequacy of

Medicaid in meeting the needs of children varies

widely across the States.

Federal legislation has been expanding Medicaid eligibility for children since 1984. By July 1988,

all children through age 6 who meet the income

and resource requirements of the AFDC program,

regardless of whether they are actually eligible for

AFDC, will be eligible for Medicaid. Because the

AFDC income standards are State-specific, however, the eligibility criteria are still varied and,

in many States, stringent. In 1986, less than onehalf of all American children under 13 years of

age in poverty were covered by Medicaid (672).

The Omnibus Budget Reconciliation Act of

1986 (OBRA-86) (Public Law 99-509) gave States

the right to extend Medicaid on a phased-in basis to all children under 5 years of age whose incomes and resources put them below the Federal

poverty line. As of January 1988, only 26 States

had extended eligibility. More recently, the Omnibus Budget Reconciliation Act of 1987 (OBRA87) (Public Law 100-203) permitted States to offer Medicaid to infants whose family incomes are

below 185 percent of the Federal poverty level and

to children up through age 8 with family incomes

below the poverty level.

Physicians who care for Medicaid patients encounter severe restrictions on the payments they

receive. In general, Medicaid fees lie well below

the fees paid by Medicare, which are in turn lower

than those paid by the private sector. The disparity grows with every year. Between 1982 and

1984, for example, private physicians’ fees increased by 13.2 percent, while the median Medicaid fee for a brief office visit remained virtually

unchanged (278). As a consequence of low Medicaid fees, physicians’ willingness to participate

in Medicaid is limited. Nationally, pediatricians

are about average among all specialties in their
Chapter l—Summary and Policy Options • 21

School-based health clinics that offer family

planning services are promising as an effective

way to reduce pregnancy rates among high-risk

teenagers. Teenagers have special needs when it

comes to family planning services. Because of their

need for confidentiality, a caring attitude on the

part of staff, and proximity, the usefulness of the

existing network of family planning services for

teenagers is limited (515a,776a).

At present, 64 percent of the total funding for

school-based clinics is provided by public sources;

the remaining 36 percent is provided by private

sources (e. g., foundations, corporations, private

fees). Of the public funding for school-based

clinics, the bulk is provided by States through the

MCH block grant or State-only funds (333a).

Medicaid’s EPSDT program provides about 14 percent of the total funds for school-based clinics. Other

Federal programs, including Title XX (Social Services), Title X (Family Planning), and the community health centers program, provide about 6 percent of the total funds.

As a comprehensive program of preventive care

for Medicaid-eligible children under 21 years of

age, EPSDT is potentially available to fund a

greater proportion of the services provided by

school-based clinics offering family planning services. In some States, however, school-based clinics

are not recognized as Medicaid providers because

they do not have a physician on staff. Furthermore, States can restrict payment to school-based

clinics by stipulating very few screening visits for

adolescents under the EPSDT periodicity schedule. To address these problems, Federal EPSDT

regulations could be changed to require States to

certify as EPSDT providers clinics that serve

schools and to mandate a minimum number of

EPSDT screening visits for adolescents.

Implementing this option would still leave to

local jurisdictions the decisions about what kinds

of services to provide and in what schools. This

option would merely enable localities that want

to offer family planning and other health services to high-risk adolescents through school-based

clinics to make greater use of Medicaid funds,

Promoting Effective Newborn

Screening Programs

Option 4: The Federal Government, acting

through the Division of Maternal and Child

Health, could use newborn screening grant

funds to encourage States to develop coordinated newborn screening programs.

The effectiveness and costs of newborn screening depend on the accurate identification of infants with the target disorders and coordination

of screening with followup and treatment services. Experts have long agreed that the quality and

efficiency of newborn screening programs could

be enhanced by the development of regional screening programs, particularly where small State populations and low budgets restrict access to high

quality screening services (e.g., 442). Currently,

however, there is no ongoing system in place to

assist States in developing regional programs.

At present, there are only three regional newborn screening programs in the United States, together accounting for about 20 percent of births

(281). A majority of births (about 71 percent) are

covered by State screening programs, most of

which have a centralized laboratory, but only

some of which have an organized program of

services linking the laboratory to followup, treatment, and monitoring. A few States, accounting

for about 9 percent of all births, operate without

either a central laboratory or a centrally organized

program, thus relying on an informal network of

families, physicians, and a combination of public and private laboratories to provide screening

and followup. In some areas, the lack of a coordinated network of services may be putting infants

at risk of not being screened or of not receiving

appropriate treatment.

The importance of program organization and

management in achieving the theoretically feasible levels of effectiveness and efficiency of newborn screening argues for an aggressive Federal

posture in encouraging the development of highquality, low-cost newborn screening programs.

The Centers for Disease Control’s monitoring

of the accuracy and precision of screening tests

through its laboratory proficiency testing program

addresses part, but not all, of the problem. The
22 ● Healthy Children: Investing in the Future

U.S. Department of Health and Human Services,

acting through the Division of Maternal and Child

Health in the Public Health Service, could take

an active role in encouraging and coordinating the

development of regionalized newborn screening

programs through its already existing oversight

authority and its discretionary funds.

Option 5: The Federal Government could increase funding for research on the effectiveness of newly developed tests designed for

routine newborn screening.

A number of States are considering inclusion

in their screening programs of newly developed

tests for cystic fibrosis, sickle cell anemia, biotinidase deficiency, and congenital adrenal hyperplasia. Adequate funding of research on the effectiveness of screening and treatment for these four

disorders before the new tests diffuse widely into

routine screening is needed to ensure the appropriate use of resources.

The value of newborn screening for cystic fibrosis, the most common of the disorders currently

under consideration for inclusion in screening programs, is currently unknown. Carefully designed

research studies of both accuracy of detection and

effectiveness of early treatment are needed to

make good judgments about the appropriate place

of tests for cystic fibrosis in newborn screening

programs. One such study of cystic fibrosis,

funded by the National Institutes of Health, is already underway (166).

A federally funded study of one aspect of early

treatment for sickle cell anemia was recently conducted (198). That study found that the use of

prophylactic antibiotics in affected infants was

successful in reducing the risk of sudden death due

to overwhelming infection early in life (198).

Other issues in the screening and treatment aspects

of newborn screening for sickle cell anemia have

not yet been resolved. Such issues include problems in counseling and followup of sickle cell

carriers.

Tests for biotinidase deficiency and congenital

adrenal hyperplasia are already being included

in many State screening programs. No adequate

long-term studies to determine the value of screening for these two disorders have yet been done.

Encouraging Appropriate

Well-Child Care

Option 6: The Federal Government could encourage States to develop EPSDT screening

protocols that combine fewer well-child care

visits than are recommended in the American Academy of Pediatrics (AAP) guidelines

with real increases in physician fees.

For the poorest children who are eligible for

Medicaid, access to well-child care needs to be

dealt with either through the regular Medicaid

program or through the Medicaid’s EPSDT program. States have established EPSDT screening

protocols that typically include fewer well-child

visits than the 13 recommended in AAP guidelines but more than the 7 visits recommended for

childhood immunizations in the first 6 years of

life. But as the EPSDT program has been implemented by the States, only a minority of eligible

Medicaid children actually do have EPSDT visits

in any year.

There are several potential explanations for this

situation. First, 32 States explicitly allow Medicaid providers to bill for routine checkups for children under the regular Medicaid program, so

many children may be receiving well-child services through this source. Second, the EPSDT program in many States is not well integrated with

Photo credit: Children Hospital National Medical Center

A schedule of well-child care visits that corresponds to

the recommended schedule for childhood immunizations

is both effective and cost-saving to the

U.S. health care system.
.

the primary health care system; EPSDT screening sites are separate from children’s usual sources

of medical care. Third, States have not aggressively recruited providers to the EPSDT programs, and private providers may be reluctant to

undertake the reporting commitments required by

EPSDT. Finally, rates of payment for EPSDT

screens are generally low.

To increase recruitment of providers to EPSDT,

one of the key incentives is the level of payment

offered by Medicaid for EPSDT services. The evidence supporting the provision of more well-child

care visits than the number required for complete

immunization is very limited. Thus, States could

limit the number of well-child care visits under

EPSDT to the seven required for immunizations

and would be able to provide higher rates of payment to EPSDT providers without incurring additional program costs.

Whether this option would actually be costneutral to Medicaid programs is uncertain, because Medicaid children do not now receive the

full complement of well-child care visits, and

higher enrollments in EPSDT could actually increase the number of visits as well as the reimbursements per visit. Nevertheless, OTA’s analysis indicates that improved adherence to clearly

effective and cost-effective well-child care could

be worth the immediate outlays.

Such a strategy would be counterproductive if

only one part were implemented by the States.

That is, if the States were to limit the EPSDT periodicity schedule without substantially increasing rates of payment for EPSDT screenings offered

by private physicians, children might not receive

the basic number of well-child care visits that are

so clearly cost-saving to the U.S. health care

system.

Reductions in the number of well-child care

visits should not be confused with reductions in

the scope and availability of followup services.

Once problems are identified in Medicaid eligible children, the availability of diagnostic and

treatment services is critical to these children’s

health status.

Chapter I—Summary and Policy Options ● 23

Option 7: Congress could require States to offer children required followup services identified in EPSDT screens, regardless of whether

the services are covered in the State’s Medicaid plan.

Once a child has entered the EPSDT screening

system, the State is mandated to provide vision,

hearing, and dental services but is not required

to offer other followup care as needed above and

beyond the services outlined in the State’s Medicaid plan. This option would increase the probability that children’s health problems identified

by EPSDT screens are actually dealt with by

Medicaid.

In States that contract with private providers

for EPSDT screens, this option would encourage

providers to enroll children in EPSDT. The option might discourage States from expanding Medicaid children’s access to EPSDT services, however, because the State would lose control over

covered services.

Encouraging the Use of Child Safety

Restraints in Automobiles

Option 8: The Federal Government, operating

through its highway funding authority, could

encourage those States whose child safety restraint laws are not very stringent to adopt

more rigorous standards.

Child motor-vehicle safety-restraint laws have

indisputably reduced serious injuries in very

young children, and all States currently have laws

requiring the use of infant or child restraints. The

details of these State laws differ (636). To enhance

the safety of children in States with less effective

laws, the Federal Government could promulgate

a model child safety restraint law whose adoption could be required for the receipt of Federal

highway funds.

Encouraging the Development of

Nurse Home Visitor Programs

Option 9: Congress could mandate that the

U.S. Department of Health and Human Services fund experiments and evaluations of

home visitor programs in populations at high
24 ● Healthy Children: Investing in the Future

risk for low birthweight or child maltreatment and other injuries.

Home visitor programs are labor intensive and

therefore costly, and the evidence on their effectiveness is based on a small number of programs

run by dedicated, enthusiastic, and particularly

skilled people, so it is premature to conclude that

the home visitor approach should be broadly

applied. Nevertheless, the evidence is certainly

strong enough to warrant more widespread experimentation with the home visitor concept as

a method of improving the outcome of pregnancy

and the health of young children. Possible funding and coordinating agencies include the National

Center on Child Abuse and Neglect (NCCAN),

the Division of Maternal and Child Health in the

Public Health Service, and the Centers for Disease Control, all of which have jurisdiction over

child health problems for which home visitor programs may be effective.

Funding for experimental programs needs to be

directed to those with the strongest evaluation designs if useful information on effectiveness is to

be achieved. The performance of NCCAN in

funding valid research has been disappointing.

Peer review of proposals for demonstration and

evaluation grants or contracts is one way of directing funds to the programs with the strongest

evaluation designs.

The U.S. Department of Health and Human

Services already has the power to issue waivers

under the Medicaid program to States that offer

additional services (such as home visitors) to

selected subgroups of Medicaid eligibles as an inducement to participate in case-management systems where the freedom to choose a provider is

restricted (Sec. 1915(b) of the Social Security Act).

To obtain a waiver, however, a State must show

that the proposed program will as a whole reduce

costs or slow the rate of increase in Medicaid program costs. It may be difficult to justify an expensive program such as home visitors on the basis of cost-savings to Medicaid. More flexibility

on the part of the Health Care Financing Administration in approving waivers containing these

services would enhance the development of such

programs.

Improving Poor Children’s Access to

Physicians’ Care

Option 10: Congress could mandate that eligibility for Medicaid be extended to all children under 9 years of age in families with

incomes below the Federal poverty line.

OBRA-87 gave States the option to expand

Medicaid to cover all poor children under 9 years

of age and offer Medicaid to infants in families

with incomes up to 185 percent of the Federal poverty line. Making Medicaid eligibility for all poor

children under age 9 mandatory would eliminate

the inevitable disparity among States in eligibility that will result from the optional provisions

of OBRA-87 and would improve access to care

for such children.

The available evidence suggests that this option

would be likely to improve the health status of

newly eligible Medicaid children because it would

increase their use of effective health care. It would

also be costly to Medicaid because free care would

bring about more use of medical care by these

children.

Option 11: Congress could require States to increase the fees paid to physicians when they

care for Medicaid children.

For children who are eligible, the Medicaid program offers a comprehensive array of health services. The key problem, however, is finding adequate sources of care. Physician participation in

the Medicaid program varies from place to place,

but it is clear that there are administrative and

payment barriers that discourage Medicaid families from using private practices.

The low levels of Medicaid fees in comparison

to private fees in many States is of particular concern. By mandating increased fee levels for physicians who treat Medicaid children, Congress

could arrest the tendency for Medicaid children

to seek primary care in sites different from those

used by non-Medicaid children. Increased fee

levels would also raise Medicaid program costs,

however, and could encourage some unnecessary

use of health services by Medicaid patients.
Chapter l—Summary and Policy Options ● 2 5

Option 12: Congress could increase direct Federal subsidies of health care providers—

through community health centers, maternal

and child health projects, and other programs

administered by State and local governments

—to provide primary health care for poor

families.

An alternative to expanding Medicaid eligibility would be for the Federal Government to increase its commitment to funding publicly subsidized providers of health care for the poor. The

erosion of real Federal funding of programs that

provide health care services for poor children and

pregnant women in the last 9 years—a period

when the population of poor and uninsured children grew—has caused an increasing strain on

these services.

Increasing funding for direct provision of health

services to the poor would have the advantage

of permitting States or localities to target services to areas of greatest need and to tailor programs to the needs of poor women and children.

Programs of enriched prenatal care, for example,

can be more easily coordinated through State or

local governments or community health centers

than through physicians’ private practices.

By definition, however, the funding of public

or publicly subsidized clinics for the poor tends

to separate provision of care for poor children and

pregnant women from care given to the nonpoor.

The implications of separate streams of medical

care are unclear. Although targeted programs can

offer enhanced services tailored to the multiple

needs of poor children and their families, their

quality and effectiveness are likely to vary widely

across areas. Without freedom to use other settings of care made possible by access to public

or private health insurance, some poor women

and children could ultimately receive lower quality care.
Part I

Overview of Children’s Health
Chapter 2

Children% Health Status:

Current Trends
CONTENTS

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31

The Problem of Infant Mortality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31

Infant Mortality in the United States and Other Developed Countries . . . . . . . . . 32

U.S. Infant Mortality Trends . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34

Why the Slowdown in Improvement in U.S. Infant Mortality Rates? . . . . . . . . . . 35

Conclusions . . . . . . . . . . . . . . . . . . . . . . . ..00..... . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45

 Children’s Health Beyond Infancy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46

Children’s Mortality Rates. ......... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47

Children’s Immunization Status . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48

Growth Stunting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49

Conclusions . . . . . . . . . . . . . . . 0 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49

Figures

Figure No. Page

2-1. Provisional U.S. Infant Mortality Rates, January 1970 to July 1986. . . . . . . . . . 36

2-2. U.S. Infant, Neonatal, and Postneonatal Mortality Rates, by Birthweight,

1980 Birth Cohort . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37

2-3. Percentage of U.S. Infants Under 1 Year of Age in Poverty, 1976-86 . . . . . . . . 42

2-4. Estimated State and Federal Funding for Maternal and Child Health

Services, 1978-84. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44

Tables

Table No. Page

2-1. Comparison of Infant Mortality Rates in the United States and Other

Countries, 1985 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32

2-2. Comparison of Birthweight-Specific Mortality Rates and the Incidence of

Low Birthweight in the United States, Sweden, and England/Wales,

1980 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33

2-3. Comparison of Birthweight-Specific Mortality Rates and the Incidence of

Low Birthweight in the United States (Selected States) and West

Germany, 1983 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34

2-4. Changes in U.S. Birthweight-Specific Mortality Rates From

1980 to 1983..... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38

2-5. U.S. Birthweight Distribution, Live Births, 1977, 1981, 1984 . . . . . . . . . . . . . . . 38

2-6. Changes in California’s Birthweight-Specific Neonatal Mortality Rates,

1978, 1981, 1984 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39

2-7. Medicaid Expenditures Per Child Recipient of Aid to Families With

Dependent Children, 1978-84 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43

2-8. Federal Appropriations for Direct Public Health Programs, Selected Fiscal

Years 1978-87. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44

2-9. Percentage of Mothers Who Obtain Early, Late, or No Prenatal Care, by

Race, 1977, 1981, 1984.... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45

2-10. Percentage of All Births in the United States to Mothers With Selected

Demographic Risk Factors, 1977,1981, 1984. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45

2-11. U.S. Children’s Mortality Rates by Age and Race, Selected Years 1968-84. . . 47

2-12. Leading ’’Causes” of Death Among U.S. Infants and Children, 1984 . . . . . . . . 48
Chapter 2

Children’s Health Status: Current Trends

INTRODUCTION

In any study of children’s health, an obvious

first question is whether American children are

as healthy as they can be and whether their health

has been improving in recent years. This chapter

addresses that question by examining recent trends

in a number of indicators of children’s health. The

greatest emphasis of this chapter is on infant mortality, but other measures of children’s health are

examined as well.

The infant mortality rate1 has long been a primary indicator of the overall health status of nations for two reasons: first, it tends to be closely

associated with access to adequate food, shelter,

education, sanitation, and health care (426); and

second, it is relatively easy to monitor with basic

vital statistics collected in most countries. Indeed,

its wide availability as a quality-of-life indicator

has given infant mortality a visibility in policy

‘The Infant mc)rtality rate tor any year IS defined as the number

ot Infant deaths under 1 year of age per 1,(X)O live births in the same

year. The infant mortality rate is the sum of two components: the

neonatal mortality rate fdefined as the number of infant deaths under 28 days per 1,000 IIve births), and the postneonatal mortality

rate (deilned as the number of Infant deaths between 28 days and

1 year per 1,000 live births), When I]nked birth and death certificates are ava]]able, the postneonatal mortallty rate is usually detlnecf a~ the number of Infant deaths between 28 days and 1 year

per 1,000 neonatal survivors. Unless otherwise indicated, the former

definition WI]] be used In this chapter.

debates that it might not otherwise have. The

much higher rate of infant mortality in the South

than in other parts of the United States, for example, has propelled leaders in that region to

come up with a plan to reduce the disparity (604).

The infant mortality rate may even overshadow

other important, but much less easily measured,

dimensions of children’s health status that take

account of the full physical, cognitive, and emotional well-being of children in this country.

One of the problems in evaluating children’s

health is that good indicators of children’s health

status are hard to find. More research aimed at

developing valid measures that take a broader

view of children’s health would certainly enhance

our understanding of the health problems of children in this country. Lacking such measures at

present, OTA has focused in this chapter on those

measures for which recent data (into the 1980s)

are available.

The first part of this chapter examines U.S. infant mortality rates and the reasons for the recent slowdown in improvement experienced in

this country. The second part of the chapter examines several indicators of children’s health status in the period beyond infancy.

THE PROBLEM OF INFANT MORTALITY

The current status of and trends in infant mor- Hope that the trend from 1981 to 1984 is an

tality rates in the United States are matters of aberration from an otherwise substantial and conwidespread concern (426,666). After a period of tinuous decline in the U.S. infant mortality rate

rapid decline from the mid-1960s through the since the mid-1960s is not supported by the most

1970s, the pace of the decline in the U.S. infant recent provisional data on U.S. infant mortality.2

mortality rate may be significantly slowing. Re- 2Provisional mortality data and final mortality data are both based

cent final mortality data show an average annual on birth and death certificates reported by State vital statistics offices.

decline in the U.S. infant mortality rate of 3.3 per- 1n this chapter, provisional data for a given year are for the preceding

12 months ending with June 30; final mortality data, hov.’ever, are

cent for the 3-year period from 1981 to 1984 (709). for the calendar year. Because of differences in reporting systems,

This is the lowest percentage reduction in the U.S. provisional data are not always comparable to final data. Trends

infant mortality rate in any 3-year period since within each system are highly correlated, however, so provisional

1965.

data on infant mortality rates may be used in lieu of final data to

provide a reasonable estimate of the most recent trends (337).

31
32 Ž Healthy Children: Investjng in the Future

These provisional data indicate that the average

annual rate of decline in the U.S. infant mortality rate for 1985 and 1986 was only 1.4 percent—a

smaller decline than the previous low for a 2-year

period. At this rate of decrease in U.S. infant mortality rates, the U.S. Surgeon General’s objective

of reducing the U.S. infant mortality rate to 9.0

infant deaths per 1,000 live births by 1990 (715)

will not be reached.

Not only has there been a decline in the rate

of decrease in the overall U.S. infant mortality

rate, but large racial disparities in infant mortality rates persist. Over the past 24 years, black infant mortality has been consistently higher than

white infant mortality by almost two to one (see

app. C). In 1985, the infant mortality rate was

18.2 infant deaths per 1,000 live births for blacks

and 9.3 for whites.

Infant Mortality in the United States

and Other Developed Countries

In comparison to the ranking of several other

industrialized countries, the United States’ ranking with respect to infant mortality is unfavorable (see table 2-l). In 1985, the United States had

10.6 infant deaths per 1,000 live births, and its

infant mortality rank of 17th was unchanged from

1980. Even if the higher infant mortality rates of

blacks and other minorities are excluded from the

comparisons for 1985, the remaining (white) U.S.

rate of 9.3 deaths per 1,000 live births would still

yield a comparatively low rank of 10th. If the U.S.

infant mortality rate in 1985 had been equal to

that achieved by the country with the lowest rate

(Japan, with a rate of 5.5 infant deaths per 1,000

live births), the United States would have had

19,350 fewer infant deaths that year—a s um

greater than the number of deaths of all children

between 1 and 15 years of age in 1985.

A country’s infant mortality rate depends both

on the incidence of low birthweight and on birthweight-specific infant mortality rates. The international ranking of the United States with respect

to the incidence of low birthweight is rather poor.

In 1980, the United States ranked 14th in the percentage of live births that were low birthweight

(less than 2,500 grams) and 15th in the percentage of live births that were very low birthweight

(less than 1,500 grams) (296).

Table 2-1 .—Comparison of Infant Mortality Ratesa

in the United States and Other Countries, 1985

Country Infant mortality rate, 1985

1. Japan . . . . . . . . . . . . . . . . . . . . 5.5

2. Finland. . . . . . . . . . . . . . . . . . . 6.3

3. Sweden . . . . . . . . . . . . . . . . . . 6.7

4. Switzerland . . . . . . . . . . . . . . . 6.9

5. Denmark . . . . . . . . . . . . . . . . . 7.9

6. Canada. . . . . . . . . . . . . . . . . . . 7.9

7. Netherlands . . . . . . . . . . . . . . 8.0

8. France . . . . . . . . . . . . . . . . . . . 8.1

9. Norway. . . . . . . . . . . . . . . . . . . 8.3

10. Ireland . . . . . . . . . . . . . . . . . . . 8.9

11. United Kingdom . . . . . . . . . . . 9.4

12. Belgium . . . . . . . . . . . . . . . . . . 9.4

13. West Germany . . . . . . . . . . . . 9.5

14. East Germany . . . . . . . . . . . . 9.9

15. Australia . . . . . . . . . . . . . . . . . 9.9

16. Spain . . . . . . . . . . . . . . . . . . . . 10.5b

17. United States . . . . . . . . . . . . . 10.6

18. Italy . . . . . . . . . . . . . . . . . . . . . 10.9

19. New Zealand . . . . . . . . . . . . . . 11.0

20. Austria . . . . . . . . . . . . . . . . . . . 11.0

21. Israel . . . . . . . . . . . . . . . . . . . . 11.9

22, Brunei . . . . . . . . . . . . . . . . . . . 12.0

23. Malta . . . . . . . . . . . . . . . . . . . . 13.6

24. Greece . . . . . . . . . . . . . . . . . . . 14.0

25. Czechoslovakia. . . . . . . . . . . . 15.3C

26. Bulgaria . . . . . . . . . . . . . . . . . . 15.8

27. Cuba. . . . . . . . . . . . . . . . . . . . . 16.5

28. Poland . . . . . . . . . . . . . . . . . . . 18.5

29. Hungary . . . . . . . . . . . . . . . . . . 20.4

30. Romania . . . . . . . . . . . . . . . . . 23.4’

aThe infant mortality rate IS defined as the number of infants who die In the first

year of life per 1,000 live b!rths.

bThis is SpaIn’s Infant mortality rate Ifl 1983

cThese infant mortallty rates are for 1984.

SOURCE: A Von Cube, Population Reference Bureau, Washington, DC, personal

communication May and September 1987

U.S. birthweight-specific mortality rates are

comparable or superior to birthweight-specific

mortality rates in a number of countries that have

the same or a lower overall infant mortality rate

(158,236). In 1980, for example, the United States

had an overall infant mortality rate of 12.6 infant deaths per 1,000 live births—higher than the

rates in Sweden (with 6.9 infant deaths) and England/Wales (with 12.1 deaths) (501) (see table 2-

2). In terms of birthweight-specific neonatal and

infant mortality rates in 1980, the United States

generally did slightly worse than Sweden at the

normal birthweight intervals, but substantially

better than Sweden at the low birthweight intervals (see table 2-2). Sweden had lower infant and

neonatal mortality rates than the United States

because Sweden had a more favorable birth distribution than the United States; in the United

States, 6.84 percent of live births in 1980 were low
Chapter 2—Children’s Health Status: Current Trends . 33

Table 2-2.—Comparison of Birthweight-Specific Mortality Rates and the Incidence of

Low Birthweight Births in the United States, Sweden, and England/Wales, 1980

United Statesa Swedenb

England/Wales b

Birthweight-specific neonatal mortality ratec

Low birth weight:

1,000-1,499g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 183.3 217.2 N A

d

< 15oog . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 437.7 NA 359.8

1,500-1,999g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49.7 56,4 NA

2,000-2,499g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15.7 17.5 17.7

<2,500g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92.9 NA NA

Normal birth weight:

2,500-2,999g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 4.2 4.9

3,000-3,499g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.0 1.6 2.4

3,500-3,999g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.4 1.0 1.8

4,000-4,499g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.5 1.2 NA

>2,500g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 NA NA

>4,000g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.9 NA 2.3

>4,500. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.7 1.2

Birthweight-specific infant mortality rate”

Low birthweight

1,000-1,499g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 212.8 235.0 NA

<1,500g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 465.6 NA NA

1,500-1,999g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65.3 67.0 NA

2,000-2,499g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24.6 21,7 NA

<2,500g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 106.3 NA NA

Normal birthweight:

2,500-2,999g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.9 6,7 NA

3,000-3,499g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.9 3.1 NA

3,500-3,999g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5 2.2 NA

4,000-4,499g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4 2.1 NA

>2,500g . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.0 NA NA

>4,000g . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.9 NA NA

>4,500g . . . . . . . . . . . . . . . . . . . . . . . 5.9 1.7 NA

Overall infant mortality rate. . . . . . . . . . . . . . . . . . . . . . . . . . . 12.6 6.9 12.1

Incidence of low birthweightf

Percentage of birthweights <1,500g . . . . . . . . . . . . . . . . . . 1.150/0 0.49% 0.770/0

Percentage of birthweights <2,500g . . . . . . . . . . . . . . . . . . . 6.840/o 4.030/0 6.790/o

aU S Department of Health and Human Services Publlc Health Service.Centers for Disease Control, prel!mlnary tables from the 1960 National Infant Mortality SurvetlIance Project (NIMS~ May 1986 AU blrfhwe!ght-speclflc deaths of multiple birth Infants were assigned to the neonatal period

bus Department of Health and Human SeWlces, publlc Health Serv,ce, National Center for Health Statlstlcs, l%OCeed/r)gS Offf?L? //lft?Vlaf/O~a/ cO//d)Oraf/Ve ~ffOfl

on Pennafal and Infant Morta//ty, VOI I (Hyattsville, MD NCHS. August 1985)

C T he blrthwe,ght.specjffc neonatal mortallty rate ,s defined as the number of infants In agiven blrthwe!ght interval who die in the flrSt 28 days Of Ilfe per 1,000 llVe

births In that interval

dNA . not ava,}able

e T he b,rthwe/ght.sPeclfl~ ,nfant ~ortallty rate js defined as the numberof Infants In a givenblrthweight Interval who d~e In the flrSt year Of life per 1,000 ilVO births

In that Interval

flnstltute of Medlclne p~eVenf,fl~ Low B,~f~we,g~f (wa~flln~ton, Dc f+atlonal AC&jemy press, 1965) Swedish percentage IS for 1978

SOURCE Office of Technology Assessment, 1988

birthweight, while in Sweden, only about 4.03

percent of live births were low birthweight (see

table 2-2). In terms of birthweight-specific mortality rates, the United States did worse than England/Wales at very low birthweight intervals, but

better than England/Wales at moderately low and

normal birthweight intervals where many more

births are concentrated. In England/ Wales, 6.79

percent of live births in 1980 were low birthweight; only 0.77 percent of live births were very

low birthweight.

In 1983, the United States had higher overall

neonatal and infant mortality rates than West

Germany (see table 2-3). According to calculations

for the United States based on aggregated data

from nine States, birthweight-specific mortality

rates in the United States in 1983 were lower than

those in West Germany, but West Germany had

a more favorable birthweight distribution; about

6.7 percent of live births in the United States were

low birthweight, as compared to 5.6 percent in

West Germany (see table 2-3). Insure, the evi-
34 ● Healthy Children: Investing in the Future

Table 2-3.—Comparison of Birthweight-Specific

Mortality Rates and the Incidence of Low

Birthweight Births in the United States

(Selected States) and West Germany, 1983

United States West

(selected States)a Germanyb

Birthweight-specific neonatal modality rate’

Low birth weight:

<1,000g . . . . . . . . . . . . . . 658.7 688.3

1,000-1,999g . . . . . . . . . . . 63.6 192.8

2,000-2,499g . . . . . . . . . . . 12.2 14,9

Normal birthweight:

>2,500 . . . . . . . . . . 1.8 1.9

All birthweights . . . . . . . 7.2 5.9

Birthweight-specific infant mortality rated

Low birth weight:

<1,000g . . . . . . . . . . . . . . 701.7 824.4

1,000-1,999g . . . . . . . . . . . 91.1 137.9

2,000-2,499g . . . . . . . . . . . 22,1 27.9

Normal birth weight.’

22,500g . . . . . . . . . . 4.6 5.1

All birthweights . . . . . . . 11.1 10.3

Incidence of low birthweight

Percentage of birthweights < 1,500g . . . . 0.490/0 0.270/o

Percentage of birthweights < 2,500g . . . . 6.7%e

5.6%

‘The neonatal mortal ity rates for the United States were calculated from a99re.

gated births and neonatal deaths in n!ne States” Georgia, Maine, Minnesota,

Missouri, North Carolina, New Hampshire, New York (excludes New York Ctty),

Vermont, and Wisconsin Infant mortality rates were calculated for those n!ne

States minus New York State All blrthweight+peclflc deaths of multiple birth

Infants were assigned to the neonatal period U.S Department of Health and

Human Serwces, Publ!c Health Service, National Center for Health Statlstlcs,

Proceed/rrgs of the /rrfemat/ona/ Co//aboratwe Effort on Perirrafa/ and /nfarrf Mor.

ta//ty, vol. I (Hyattswlle, MD. NCHS, August 1985)

bl-ferausgeber Statist tsches Bundesamt Wiesbaden, Verlag, W Kohlhammer

GMBH Stuttgart und Mainz, Bevolkerung und Erwerbstatideit, Rlehe 1, Geblet

u nd Bevolkeru n, 1983

cThe birth welght.specific neonatal mortallty rate IS defined as the number of infants In a given blrthwelght Interval who die In the first 28 days of life per 1,000

Iwe blrfhs In that Interval

dThe blrtflwelght.speclflc Infant mortality rate IS defined as the number of lnfanls In a given blrthweight interval who die In the first year of Ilfe per 1,000

I!ve births In that Interval

eThe percentage calculated on the basts of nine States Is 66 Percent, the Percentage calculated on the basis of eight States IS 67 percent

SOURCE Off Ice of Technology Assessment, 1988

dence that is available indicates that the relatively

poor international ranking of the United States

with respect to infant mortality is largely due to

the country’s unfavorable birthweight distribution.

U.S. Infant Mortality Trends

Over the first half of this century, the U.S. infant mortality rate declined by 100 percent, reaching about 50 infant deaths per 1,000 live births

in 1950. The subsequent trends in the U.S. infant

mortality rate can be divided into two time

periods:

● 1950 to 1967, represented by little change in

infant mortality rates for whites and even less

change in the rates for blacks; and

● 1968 to 1984, represented by a rapid decline

in infant mortality for both whites and blacks.

Because vital statistics data from the early 1960s

may not be as accurate as data from the late 1960s

and subsequent years, particularly for blacks,3 the

discussion that follows emphasizes the years after 1967.

U.S. infant, neonatal, and postneonatal mortality rates and annual percentage changes for the

years 1968 to 1985 are presented in appendix C.

From 1968 to 1985, the U.S. infant mortality rate

declined by about 50 percent for both whites and

blacks, reaching 9.3 infant deaths per 1,000 live

births for whites and 18.2 infant deaths for blacks.

The average annual compound rate of decline in

overall U.S. infant mortality during this period

was 4.1 percent.

Since 1981, there has been a substantial, unprecedented, and statistically significant slowdown in the rate of improvement in U.S. infant

mortality rates. From 1981 to 1984, the U.S. infant mortality rate declined by an average annual

compound rate of 3.3 percent (709). The 3.3-percent average annual decline in the U.S. infant

mortality rate from 1981 to 1984 not only was

down from a 4.1-percent decline from 1977 to

1981, but it was also lower than the 4.5-percent

average annual decline for the entire period from

1968 to 1981 (709).

Provisional data on U.S. infant mortality rates

for 1986 indicate that the situation is continuing

to deteriorate. Provisional data for each year from

1982 through 1986 indicate a progressive decrease

‘The reason vital statistics data from the early 1960s, particularly

for blacks, may not be as accurate as data from the late 1960s and

subsequent years is that in the 1960s there may have been a considerable number of out-of-hospital births to blacks. One investigator

notes that from 1950 to 1967, nonwhite out-of-hospital births in the

United States declined from 42 percent of nonwhite births to 7 percent. A State-level study of the 1950-67 period showed that the reported low birthweight rate was highly correlated with the percentage

of nonwhite births occurring in the hospital. This suggests that as

more nonwhite births occurred In hospitals and were reported, low

blrthweight and infant mortality increased (126).
Chapter 2—Children’s Health Status: Current Trends . 35

in the average annual compound rate of decline

in the U.S. infant mortality rate (709). 4 The decline in the provisional U.S. infant mortality rate

for 1987 is less than 1.1 percent—a negligible improvement over the previous year,

Although year-to-year fluctuations in reported

infant mortality rates are expected, the recent

slowdown in improvement of U.S. infant mortality rates cannot be dismissed as random variation

around the trend. At OTA’s request, the National

Center for Health Statistics (NCHS) predicted

U.S. infant mortality rates for the 3-year period

from 1982 to 1984 on the basis of trends in final

U.S. infant mortality rates from 1968 to 1981.5

The U.S. infant mortality rate NCHS predicted

for 1984, 10.4 deaths, was significantly lower than

the actual 1984 rate of 10.8 deaths (p = 0.01).

Had the U.S. infant mortality rate continued to

decline after 1981 at the rate predicted by NCHS,

the United States would have suffered 1,395 fewer

infant deaths in 1984 than actually occurred (339).

The disparity between the predicted rate and the

actual U.S. infant mortality rate increased further

in 1985—the most recent year for which final U.S.

infant mortality data are available. The U.S. infant mortality rate in 1985 was 10.6 infant deaths

per 1,000 live births, while the rate predicted on

the basis of the NCHS regression analysis was 9.9

deaths.

Just how substantial a departure from the past

the most recent U.S. infant mortality trends represent is illustrated in figure 2-1. The dashed line

shows the U.S. infant mortality rate through July

1986 as predicted on the basis of provisional data

for January 1970 to December 1982 (339). The

solid line shows the U.S. infant mortality rate as

determined from monthly provisional infant mortality data from January 1970 through July 1986.

For the years 1983 through July 1986, the solid

line substantially departs from the dashed line,

4

The reduction in the U.S. infant mortality rate, according to

provisional data, was 6.6 percent for 1982, 3.5 percent for 1983,

1,8 percent for 1984, 1.9 percent in 1985, 0.9 percent in 1986, and

1.1 percent in 1987 (709). From 1982 to 1986, the average annual

reduction in provisional U. S, infant mortality rates was 3 percent

(about 71 percent of the average rate of decrease in the provisional

rates for 1977 to 1981 ).

‘Rates were predicted by a linear regression of the logarithm of

infant mortality as a function of time.

Why the Slowdown in Improvement in

U.S. Infant Mortality Rates?

Why the slowdown in improvement in the U.S.

infant mortality rate since the early 1980s? To address this question, it is necessary to understand

the importance of birthweight as a risk factor for

infant mortality. Low birthweight, defined as under 2,500 grams, is a major determinant of infant

mortality (296). In 1980, low birthweight infants

made up less than 7 percent of the population of

newborns in the United States but accounted for

60 percent of all babies who died in infancy (687).

Low birthweight affects infant mortality through

its effect on both neonatal mortality and on postneonatal mortality, but the greatest effect is on

neonatal mortality. In 1980, 75 percent of all neonatal deaths and 30 percent of all postneonatal

deaths in the United States occurred in low birthweight infants (687). As shown in figure 2-2, the

risk of death increases as birthweight decreases.

In 1980, very low birthweight infants (those weighing under 1,500 grams at birth) had only about

6 chances in 10 of surviving beyond the neonatal

period.

Progress in reducing U.S. infant mortality can

come either through changes in the distribution

of birthweights toward heavier babies or through

changes in birthweight-specific infant mortality

rates. Historically, most of the progress in the

United States since 1960 has been in the realm of

improved birthweight-specific mortality rates (8,

211,340,628,754). In fact, between 1960 and 1980,

about 91 percent of the improvement in the U.S.

infant mortality rate was due to changes in birthweight-specific mortality rates (80). The improvements in birthweight-specific mortality rates from

1960 to 1980 benefited black babies as well as

white babies. For blacks, in fact, the percentage

decreases in birthweight-specific infant mortality

from 1960 to 1980 were higher than the decreases

for whites (80).

Improvement in U.S. birthweight-specific mortality rates has continued beyond 1980 (see table

2-4). ’ From 1980 to 1983, declines in birthweight-

*Estlmates of 1983 birthweight-specitlc Infant mortality rates for

the United States were derived by aggregating data from eight States:

Georgia, Maine, Minnesota, Missouri, North Carolina, New Hampshire, Vermont, and Wisconsin (687, 706). Comparison of the overall

continued on next page
36 • Healthy Children: Investing in the Future

Figure 2-1.— Provisional U.S. Infant Mortality Rates, January 1970 to July 1986a

22

18

15

12

10

8

(12-month moving averages)

I I 1 I 1 t

o

Year/Mont h

NOTE Dashed line fitted by log-linear regression analysis of provisional U.S. infant mortality rates for January 1970 to December 1982

SOURCE: J Kleinman, National Center for Health Statistics, Public Health Service, U S. Department of Health and Human Services, Hyattsville, MD, unpublished data

from U S. vital statistics, 1986

specific mortality rates were generally larger

among infants born at low birthweights than

among infants born at normal birthweights. An

important exception was in the group of tiny infants weighing less than 1,000 grams at birth; the

decline in birthweight-specific mortality among

these infants was less than the decline for normal

birthweight infants. The group of infants that experienced the largest decline in birthweight-specific mortality rates from 1980 to 1983 was the group

in the birthweight interval from 1,000 to 1,499

grams.

While U.S. birthweight-specific mortality rates

have been improving, the birthweight distribution

in the United States has actually deteriorated since

1977. As shown in table 2-5, the percentage of

live births at normal birthweights increased slightly

from 1977 to 1984, but there was a shift in the

distribution of low birthweight babies toward the

lowest birthweight intervals (those under 1,000

grams). Had U.S. birthweight-specific mortality

rates not improved from 1977 to 1984, the deteriorating birthweight distribution would have resulted in an increase in the overall U.S. infant

mortality rate. The overall U.S. infant mortality

rate would have increased at an average annual

rate of 0.7 percent between 1977 and 1980 and

1.2 percent between 1981 and 1984 (339).7

aggregated neonatal and infant mortality rates of this sample of

States with the U.S. final mortality statistics for 1983 supports the

conclusion that these States were highly representative of the United

States—there was almost no difference in the overall rates.

7

These calculations were based on the assumption that U.S.

birthweight-specific mortality rates reported for 1980 held for the

entire 1977-84 period.
Chapter 2—Children Health Status: Current Trends . 37

Figure 2-2.—U.S. Infant, Neonatal, and Postneonatal Mortality Rates, by Birthweight, 1980 Birth Cohort

500

400

300

200

100

0

Very low Moderately low Normal

(singletons)a

Very low Moderately low Normal Very low Moderately low Normal

birthweight birthweight birthweight birthweight birthweight birthweight birthweight birthweight

(< 1,500g)

birthweight

( <2,500g) ( > 2,500g) (<1,500g) (<2,500g) ( > 22,500g) (<1,500g) (<2,500g) ( > 2,500g)

Birthweight category (grams)

❑ Infant mortality rate ❑ Neonatal mortality rate Postneonatal mortality rate

aThe mo~allty rates depicted in this figure are for all races combined For a breakdown of mortallty rates by race, see table C-4 In aPP C of this ‘ePorf

SOURCE Office of Technology Assessment 1988, calculated from the prelimlna~ tables from the 1980 Nat!onal Infant Mortality Surveillance prolect U S Department

of Health and Human Services, Publtc Health Service, Centers for Disease Control, Atlanta, GA, May 1986

Furthermore, although U.S. birthweight-specific

mortality rates have continued to decline throughout the 1980s, the improvements are coming more

slowly now than they did in the late 1970s and

the pattern of improvement across birthweights

has changed. National birthweight-specific infant

mortality rates are available only for 1960 and

1980; to consider recent changes in the pattern of

mortality across birthweights, one must use more

limited databases compiled in individual States.

Data on birthweight-specific neonatal mortality from California are shown in table 2-6.8 These

data show a substantial slowdown in improvement in the neonatal mortality rates for moderately low birthweight babies (those weighing between 1,500 and 2,499 grams) from the 1978-81

8Birthweight-speci fic neonatal mortafit y data from California are

available only for newborns weighing more than soo grams. Consequently, the birthweight-specific mortality rates reported in table 2-6 are lower than California’s official neonatal mortality rates.
38 ● Healthy Children: Investing in the Future

Table 2-4.—Changes in U.S. Birthweight-Specific Mortality Rates From 1980 to 1983

Birth weight-specific

neonatal mortality ratea

Percent change

1980C 1983d 1980-83e —

Low birthweight:

<1,000g . . . . . . . . . . . . . . . . . . . . . . 727.3C

658.7d– 9,4 ”/0

1,000-1,499g . . . . . . . . . . . . . . . . . . . 183.3C

1 17.3d –35.9

1,500-1,999g . . . . . . . . . . . . . . . . . . . 49.7’ 38.1 d

– 23.3

2,000-2,499g . . . . . . . . . . . . . . . . . . 15.7C

12.2d

– 22.2

Normal birthweight:

22,500g . . . . . . . . . . . . 2.2C 1.8d –14.9”/0

Birthweight-specific

infant mortality rateb

Percent change

1980C 1983f 1980-83e

753.5C701.7f

– 6.8 ”/0

212.8C

154.9f – 27.2

65.3C59.8f– 8.4

24.6C

22.1f

– 9.8

5.0C

4.6f

– 8.1 0/0

12.0C

11.1f All birthweights . . . . . . . . . . . . . . . 8.4 – 7.60/o C

7.2d

– 13.8%

aThe b,~tfr~e(gflt.speclflc neonatal mortallty rate IS defined as the number of infants i n a given blrthweight Interval who die in the flrSt 28 days Of life Per 1,000 live

births In that Interval

b T he birthweight.specific Infant mortallty rate IS defined as the number of infants in a given birthweight Interval who die in the first year Of Ilfe per 1,000 live blrfhs

Ccenters for Disease Control, publlc Health Service, U.S I)epartrnerlt of Health and Human Services, preliminary table from the 1980 National Infant Mortality Survell.

lance Project, Atlanta, GA, May 1988 All blrthwe!ght.spec! flc deaths of mult!ple birth infants were assigned to the neonatal period.

du s blrthwelght.spec lflc neonatal mortality rates for 1983 were calculated from aggregated blrtfls and rleorlatal deatfls in nine States Georgia, Maine, Minnesota,

Missouri, North Carolina, New Hampshire, New York (excluding New York City), Vermont, and Wisconsin U S Department of Health and Human Serwces, Public

Health Serwce, National Center for Health Statwtics, Proceed/rrgs of the /rrfernafiona/ Co//aborat/ve Effort on Perinata/ and Irrfarrf Morta//ty, VOI I (Hyatt svllle, MD

NCHS, August 1985)

e percen tage change calculated on unrounded number s

fu s birthweight.speclflc ,nfant mortality rates for 1983 were calculated for the nine states noted above minus New York State

SOURCE Off Ice of Technology Assessment, 1988

Table 2-5.—U.S. Birthweight Distribution, Live Births, 1977, 1981, 1984

1977 a ‘

- - - 1984C Average annual percentage

Number of Percent of Number of Percent of Number of Percent of increase in number of births

births (000s) all birthsd

births (000s) all birthsdbirths (000s) all birthsd 1977-81e

1981-84e

Low birthweight:

<500g . . . . 30 0.1 0/0 3.5 0.1 0/0 4.4 0.1 0/0 3.560/0 8.1 70/0

500-999g . . . . . . . . . 14.2 0 4 16.1 0.4 16,8 0.5 3.11 1.56

1,000-1,499g . . . . . . 20,4 0.6 22.2 0.6 22.3 0.6 2.06 0.19

1,500-1,999g 45.6 1,4 47.1 1.3 47.1 1.3 0.80 0.02

2,000-2,499g ., . . . . ., 152.1 4.6 158.1 4.4 155.8 4.3 0.98 – 0.04

Normal birthweight:

22,500g . . . . . 3,091.3 92.90/. 3,382.0 93.20/o 3,422.7 93.30/. 2,270/. 0.40%

All birthweights ., . . . . . . . 3,326.6 100.0”/0 3,629.2 100.0 ”/0 3,669.1 1OO.OO

/O 2.200/0 0.37 %

au s Depaflment of Health and Human Servces, Public Health Service, National Center for Health statistics, “Advance Report of Final Natality Statistics, 1984, ” Month/y

Vita/ Staf/sfics Report, VOI 35, No 4 (supplement), DHHS Pub No (PHS) 88-1120 (Hyattsville, MD PHS, July 18, 19S8)

bu s Department of Health and Human se~l~es, public Health se~lce, National Center for Health Statlstlcs, Vita/ Sta/lsfics of the Un/ted StafeS,

DHHS Pub No (PHS) 85.1113 (Washington, DC: U S. Government Printing Office, 1985),

Cu s Department of Health and Human $jewlces, publ, c Health se~lce, National Center for Health Statlstlcs, Vita/ Sfaflstlcs Of the Urr/ted Sfat.9S,

DHHS Pub No (PHS) 81-1113 (Washington, DC U.S Government Prtntlng Office, 1981)

d T he distribution of I,ve biflhs of unknown blrthwelght was assumed to be the same as the dlstrlbutlon of I!ve births at known blrthwelghts

epercentage calculated on unrounded numbers

SOURCE Office of Technology Assessment, 1988

1981. Vo/ / rVata/lty

1977 Vo/ / Nafa//fy,

period to the 1981-84 period and dramatic improvement in the rates for very low birthweight

infants (those weighing between 500 and 1,500

grams), especially in the tiny newborns weighing

500 to 999 grams. The neonatal mortality rate for

the very low birthweight infants in California declined more rapidly in the 1980s than it did in the

late 1970s; however, very low birthweight infants

make up a small proportion of all low birthweight

births (see table 2-5), so the neonatal mortality

rate for all low birthweight babies (i.e., those

weighing more than 500 grams) declined slightly

more slowly in the early 1980s than

late 1970s.

it did in the

Thus, available evidence suggests that the slowdown in improvement in U.S. infant mortality in

the early 1980s compared to the late 1970s is the

result of both a more rapid deterioration in the

U.S. birthweight distribution and, to a lesser extent, slowed improvement in U.S. birthweightspecific mortality rates.

There are no sure answers to the question of

why the U.S. infant mortality rate began to level
Chapter 2—Children Health Status: Current Trends • 39

Table 2-6.—Changes in California’s Birthweight-Specific Neonatal Mortality Rates, 1978, 1981, 1984

Birthweight-specific neonatal mortality rate’ — Percent change

1978 1981 1984 1978-81

Low birth weight:

500-999g . . . . . . . . . . . . . . . . . . . . ., 628.79 582.06 487.92 – 7.43%

1,000-1,499g . . . . . . . . . . . . . . . . . . . 181.55 139,15 103.99 – 23.35

1,500-1,999g . . . . . . . . . . . . . . 48.00 35.64 36,54 – 25.76

2,000-2,499g . . . . . . . . . . . . . . . . . . 13.99 12,72 12,10 – 9.09

500-2,499g . . . . . . . . . . . . . . . . . . . . 73.24 64.04 56.28 – 12.56

Percent change

1981-84

– 16.17%

-25.2 7

+ 2.54

– 4,86

– 12.11

Normal birthweight:

 > 2,500g 1.91 1.67 1.47 – 12,87 0/0 – 11.95%

All birthweights

>500g . 6.29 5.25 4,66 - 16.47% – 11,27 0/0

a

The bl rt hwe! qht spec! flc neonatal mortal I t y rate Is defl ned as the n u m ber of I n fants I n a given bl rt hwelght Interval who dle In the fl rst 28 days of I I fe per 1 000 I Ive

births in that nlewal

SOURCE Off Ice of Technology Assessment 1988 calculated from unpublished data from the Maternal and Child Health database, provided by F Rust Un!verslty of

Caltfornla Santa Barbara CA August 1986 April and August 1987

off in the early 1980s. Too little is known about

how various factors—maternal, medical, and environmental—affect newborn babies’ risks of dying in their first year to quantify the effects of

changes in these factors on infant mortality. Yet

we do know enough about the kinds of factors

that matter to explore possible explanations for

the slowdown. Several possible explanations are

examined below.

Changes in Birth Reporting/Increased

Resuscitation of the Tiniest Newborns

Some observers have suggested that the recent

slowdown in improvement in the U.S. infant mortality rate is, at least in part, an artifact of increased reporting of live births that in the past

would have been reported as fetal deaths or would

have gone unreported altogether.

The basis for most States’ reporting requirements is the World Health Organization’s definition of a live birth. That definition classifies as

a live birth “the complete expulsion or extraction

from its mother of a product of conception, irrespective of the duration of pregnancy, which,

after such separation, breathes or shows any other

evidence of life such as beating of the heart, pulsation of the umbilical cord, or definite movement

of voluntary muscles” (700). If the product of the

delivery does not show any such signs of life, it

is classified as a fetal death. In 43 States, fetal

deaths have to be reported only if the gestational

age is at least 20 weeks or if a minimum weight

has been reached (755). If extremely premature

births (e.g., those with birthweights under 500

grams) are more frequently resuscitated today

than they were in the late 1970s, they might be

newly counted as live births instead of as fetal

deaths, though their infant death rate would approach 100 percent. Counting these under-500-

gram resuscitated infants as live births rather than

as fetal deaths would push up neonatal and infant mortality rates because the vast majority of

these tiny infants die.

Even without more aggressive resuscitation of

the tiniest newborns, hospitals today may be more

careful to report as live births what might have

been reported as fetal deaths in the past. The reasons include increased pressure by State health authorities for complete reporting (210) as well as

legal and economic considerations (755). More

careful reporting of live births by hospitals also

would have the effect of artificially raising U.S.

neonatal and infant mortality rates. ”

Since changes in birth reporting practices are

difficult to assess without detailed review of hospital and vital statistics records, more indirect tests

of the importance of the reporting phenomenon

are necessary. National data on the distribution

of live births in the United States show that from

1981 to 1984, the reported number of live births

under 500 grams increased much more rapidly

than the number of live births at higher birth-

‘There appear to be lar~e dltterence< ]n reporting [~f l]ve birthi

among the States an oh~ervatlon” which suggests that there i> \ub-

\tant Ial r(xlrn tc)r changes ]n reporting practices through(lu t the c oun -

tr~ ( 7551
40 . Healhy Chilren: Investing in the Future I

weights (see table 2-5). This observation suggests

that reporting changes may indeed be taking place

in the under-500-gram birthweight class.

The increase in reported live births at the lowest

birthweights in the United States is matched by

a rapid decrease in fetal death rates at the lowest

weights. ’” The U.S. fetal death rate for weights

under 1,000 grams declined much more rapidly

from 1981 to 1984 (2 percent annually) than it declined from 1977 to 1981 (‘/2 percent annually).

If deliveries that in previous years would have

been labeled fetal deaths are increasingly being

labeled as live births, this labeling could account

for the rapid rise in the number of very low birthweight live births.

To test how much of a difference such reporting changes could make to the U.S. infant mortality rate, OTA recalculated U.S. infant mortality

rates for 1981 and 1984, making two assumptions:

●

●

that in the two periods 1977-81 and 1981-84,

the rate of change in the number of births

under 500 grams was the same as the rate of

change in number of births in all other low

birthweight categories combined (500 to 2,500

grams); and

that all of the “excess births” in the under500-gram category (i. e., the difference between the number of births actually reported

in the under-500-gram category and the number that would have been reported had the

rate of change held constant) died in infancy.

OTA calculated that without these excess

births in the under-500-gram category, the U.S.

infant mortality rate in 1981 would have been

11.81 deaths per 1,000 live births in 1981 (instead

of 11.9 deaths) and 10.41 deaths per 1,000 in 1984

(instead of 10.8 deaths). These recalculated infant

mortality rates correspond to a compound annual

rate of decrease in the U.S. infant mortality rate

of 4.4 percent from 1977 to 1981 and 4,1 percent

from 1981 to 1984.

Thus, much of the recent slowdown in improvement in the U.S. infant mortality rate could be

accounted for by increased reporting of deliveries as live births. How much of the slowdown can

‘“The fetal death rate is defined as the ratio of tetal deaths to fetal deaths plus live births.

be attributed to this reporting phenomenon depends on our willingness to believe that other

factors—medical or environmental—are at work

to differentially increase the frequency of live

births in the very lowest weight category. If, for

example, sexually transmitted diseases were found

to be important correlates of very premature delivery, an increase in the 1980s in the incidence

of such disease among women of childbearing age

could have differentially increased the number of

births under 500 grams in this period—but this

is simply conjecture. Currently, all that can be

said is that we cannot rule out the possibility that

a large part of the leveling off of improvement

in the U.S. infant mortality rate in the early 1980s

was an artifact of changes in birth reporting.

Loss of Technological Opportunities

One possibility is that technological opportunities for improving either the U.S. birthweight

distribution or birthweight-specific mortality rates

that were available in the 1970s have run their

course and have not been replaced by new opportunities of equal importance. Because 65 percent

of all infant deaths occur in the neonatal period

and 7.5 percent of neonatal deaths occur in low

birthweight babies, it is useful to consider whether

opportunities to improve the outcomes of low

birthweight babies in the neonatal period have declined.

The 1970s saw rapid advances in technologies

for treating low birthweight babies, particularly

babies with respiratory distress syndrome (RDS),

the most common cause of neonatal death.11 Beginning in 1974, new respiratory therapy techniques and improvements in mechanical ventilation had a major impact on deaths from RDS

(488,634). These respiratory technologies were

first successfully applied in more mature infants

with RDS. For less mature infants with RDS, it

is relatively difficult for respiratory technology

to compensate for undeveloped lungs, and weaning such infants from a mechanical ventilator

takes longer (77,237,285). Nevertheless, recent

years have seen respiratory therapy technologies

increasingly applied, and with greater success, to

very low birthweight newborns (665).

1 ] A~vanceS in techn<]l(~~itx for treating low blrt hwelght bable~

are discussed in OTA’S 1987 case study on nec~nata] intensive care

(665),
Chapter 2—Children Healh Status: Current Trends • 41

Given the history of development of neonatal

respiratory therapy, it is reasonable to assume that

the technology diffused in the late 1970s to moderately low birthweight babies and only later to

smaller newborns. The vast majority (82 percent)

of low birthweight infants are of moderately low

birthweight (between 1,500 and 2,500 grams), so

it is possible that the improvements in neonatal

intensive care that are continuing to yield dramatic improvements in very low birthweight babies’ chances of survival are statistically imperceptible because of the relatively small number

of very low birthweight births. Data presented

above from California support this hypothesis (see

table 2-6). In California, the decline in neonatal

mortality among very low birthweight babies was

much higher in the 1981-84 period than it was in

the 1978-81 period. But for moderately low birthweight babies, the high rate of decline in the 1978-

81 period virtually evaporated in the 1981-84

period. Across all low birthweight classes, these

changes translated into a modest decrease in the

rate of decline in infant mortality (from 12.6 percent in the 1978-81 period to 11.9 percent in the

1981-84 period, when the birthweight distribution

is held constant at the 1978 level).

Thus, it appears that in recent years the ability of new neonatal intensive care technologies to

bring about dramatic improvements in U.S. infant mortality rates has declined slightly. The decline would be greater with each succeeding year

as existing neonatal technology becomes ever

more widely applied even among the lowest birthweight babies. This explanation for the slowdown

in improvement in U.S. infant mortality rates,

therefore, should become more important as time

goes by. But new technologies currently under

development—e.g., the use of exogenous natural

or synthetic lung surfactant (207,251,304,349,422,

602,751)—may have a dramatic impact on RDS

and, hence, infant mortality, in the future.

Another influence on U.S. infant mortality in

the mid-1970s may have been the availability of

legal abortions. Recent analyses suggest that the

availability of abortions precipitated by the 1973

U.S. Supreme Court decision Roe v. Wade may

have had an influence on the rapid decreases in

U.S. neonatal and infant mortality rates in the

mid-1970s (118,119,229,311 ). The mechanism for

this influence is probably the differential reduction of births to women at high risk for infant

mortality, such as very young teenagers and unmarried women (610).

The rapid increase in the U.S. abortion ratio12

beginning in 1973 would be expected to stabilize

at a point when the availability of abortion providers was high enough to meet the demand for

their services. At that time, the impact that abortion would have on the U.S. infant mortality rate

would have already occurred, and sustaining the

reduction in infant mortality in subsequent years

would require new factors that may not have materialized.

Recent data suggest that the U.S. abortion ratio has indeed stabilized since 1981. Among adolescents, the percentage of pregnancies ended by

abortion remained virtually unchanged between

1980 and 1982 (703). These data would suggest

that the decreases in U.S. infant mortality brought

about by the sudden availability of legal abortion

in 1973 were largely complete by 1981.

Increased Poverty

The inverse relationship between infant mortality and income has been well documented (118,

176,218,229,619,757). But the ways in which poverty affects infant mortality is not well understood. Poor people may have lower rates of use

of health care, higher stress, less hospitable home

environments, higher rates of risky behaviors

(e.g., smoking during pregnancy), fewer social

supports, and more nutritional deficiencies than

nonpoor people and also may exhibit racial and

ethnic differences that contribute to the disparity in infant mortality between poor and nonpoor

people (456,583,757). Because the causal pathways between poverty and infant mortality are

not well understood, information on trends in

poverty in the recent past can only be suggestive.

Since the late 1970s, the family incomes of infants in the United States deteriorated markedly.

Figure 2-3 shows the percentage of infants in the

United States from families with household incomes below the poverty level throughout the

1976-86 period. Whereas the average percentage

“The abortion ratio is defined as the number of abortions per

1,000 live births.

72- 676 0 - 88- 2
42 . Healthy Children: Investing in the Future

Figure 2-3.— Percentage of U.S. Infants Under 1 Year

of Age in Poverty, 1976-86

25

20

Q

“ t

5

t

1976 1978 1980 1982 1984 1986

Year

SOURCE J McNeil Bureau of the Census U S Department of Commerce.

Washington, DC, personal communication, June 1987

of U.S. infants in poverty between 1976 and 1979

was 17 to 18 percent, it rose to 23.9 percent between 1981 and 1983 (419).13 Since 1983, the percentage of U.S. infants in poverty has moderated,

but at 21.3 percent in 1986, it was still almost 4

percentage points higher than it was in the late

1970s,

There is no way of knowing exactly how much

effect the dramatic increase in the percentage of

infants living in poverty in recent years has had

on the U.S. infant mortality rate. Probably, however, only a modest part of the leveling off of improvement in the U.S. infant mortality rate in the

early 1980s is attributable to the deterioration in

living standards of infants and their mothers. One

study of low birthweight in the State of Washington found that the percentage of women receiving late or no prenatal care in low-income

census tracts in the State increased 34 percent and

that the low birthweight rate in these census tracts

increased by 18 percent between 1980 and 1982,

years in which Washington State experienced an

economic recession (176). The dramatic increase

in the low birthweight rate in the low-income

census tracts would cause a comparatively small

rise in total infant mortality rates in the region,

“The percentage of children in poverty in the United States could

actually be slightly higher than these data suggest. The reason is

that these data categorize mothers with infants who live with parents or guardians as being within the entire household income even

if they do not receive any benefit of income earned by other individuals in the household.

because poor women constitute a minority of the

population.

Changes in Pregnant Women and Children’s

Access to Health Services

Other chapters of this assessment summarize

the evidence on the effect of health care services

on the health of U.S. infants and children. The

weight of the evidence supports the contention

that early and appropriate use of prenatal care,

combined with access to specialized perinatal services for high-risk mothers and newborns, improves

birth outcomes both by raising birthweights and

by improving birthweight-specific mortality rates. ’4

In addition, delay in seeking or receiving care for

infants with life-threatening conditions that respond strongly to appropriately timed medical

care (e.g., infectious and respiratory diseases) may

affect infant mortality rates (610).

Because poverty and unemployment reduce financial access to health care services, the inverse

relationship between poverty and infant mortality may in part reflect differences in the use of

appropriate services by pregnant women and children. But the impact that increases in U.S. poverty have on access to health care can be mediated

by the provision of publicly funded or subsidized

health services. Conversely, cutbacks in the availability of public subsidies can exacerbate the impact of poverty and unemployment on access to

services.

In recent years, while the poverty rate among

infants and children in this country rose, Federal

spending for health care services for the poor declined. Three barometers of spending trends are

the following:

1.

2.

3.

changes in expenditures by Medicaid on behalf of poor children,

changes in Federal spending on maternal and

child health (MCH) services, and

changes in Federal spending for community

health centers and migrant health centers—

direct Federal grant programs that provide

primary health care to poor populations.15

l~prenata] care is discussed at greater length in ch. 4. Specialized

perinatal services for high-risk newborns are discussed in OTA’S

1987 case study on neonatal intensive care (665).

I Ssee Ch. 3 for more detail on these programs.
.

Chapter 2—Children Health Status: Current Trends ● 4 3

Throughout the period from 1980 to 1984, the

proportion of poor children eligible for Medicaid

remained fairly stable. During that period, however, Federal and State Medicaid spending per

child recipient of Aid to Families With Dependent

Children (AFDC) in constant dollars declined, reflecting cutbacks in covered services, lower payment rates to hospitals and doctors, and increased

control over the use of services (278). From 1981

to 1984, total Medicaid expenditures per AFDC

child declined in constant dollars by an average

of 3.1 percent annually—almost twice as fast as

the decline in the 1978-81 period (see table 2-7).

Total Medicaid spending on behalf of children

from 1981 to 1984 declined by 5.1 percent in constant dollars for physician care and by 4.4 percent in constant dollars for prescription drugs

(278).

Funding by the Federal Government for MCH

programs also decreased dramatically in real terms

in the early 1980s, in contrast to more gradual

declines in previous years. Whereas real Federal

funding for MCH services declined at an average

annual rate of 6 percent between 1978 and 1981,

it declined at an average annual rate of 12 percent between 1981 and 1984 (see table 2-8). Similar declines in funding for the federally supported

community health and migrant health centers

occurred in the period from 1981 to 1984 (see table 2-8). Trends in Federal and State funding for

MCH services from 1978 to 1984 are shown in

figure 2-4. Although the States’ funding for MCH

Table 2.7.—Medicaid Expenditures Per Child

Recipient of Aid to Families With Dependent Children,

1978-84

Expenditures per recipient

Nominal Constant 1978

Year expenditures dollar expenditures

1978 . . . . . . . . . . . . $322 $322

1979 . . . . . . . . . . . . $346 $316

1980 . . . . . . . . . . . . $384 $316

1981 . . . . . . . . . . . . $416 $306

1982 . . . . . . . . . . . . $416 $278

1983 . . . . . . . . . . . . $456 $283

1984 . . . . . . . . . . . . $477 $279

Average annual percentage change:

1978-81 . . . . . . . . . +8.90/o – 1.6%

1981-84 . . . . . . . . . +4.7% –3. 1‘Yo

SOURCE :J. F Holahan and J.W. Cohen, Medicaid The Tradeoff Between Cost

Containment and Access to Care (Washington DC Urban Institute

Press, 1986)

services remained at approximately the same level,

combined Federal and State funding for MCH

services declined in constant dollars by 23..5 percent between 1981 and 1984.

The impact of reductions in publicly financed

health services for pregnant women and poor children in the early 1980s when the U.S. poverty rate

was rising is unknown. For both whites and blacks

in the United States, the percentage of mothers

who did not obtain any prenatal care or obtained

late prenatal care decreased in the 1977-81 period,

but the percentage increased in the 1981-84 period

(see table 2-9), This observation suggests that the

decline in Federal spending on health care for poor

children and pregnant women in the early 1980s,

coupled with a rise in poverty during that period,

may have had some impact on these individuals’

access to effective health care. How such changes

in access may have translated into impacts on the

total U.S. infant mortality rate cannot be assessed

with information currently available, Their contribution is likely to have been small overall, however, because the Federal funding cutbacks affected a relatively small proportion of all pregnant

women and infants.

Since 1984, the cutbacks in publicly financed

health services for pregnant women and infants

may have begun to moderate. The 1984 Deficit

Reduction Act (Public Law 98-369) expanded

Medicaid eligibility for pregnant women and children who meet the income requirements of the

States, regardless of their family structure, and

the Consolidated Omnibus Reconciliation Act

(Public Law 99-272) gave States the option of covering all women in poverty under Medicaid.16 Furthermore, several States have developed their own

initiatives for delivering care to pregnant women

and children in need (491). To the extent that the

cutbacks in Federal programs contributed to the

recent slowdown in improvement in the U.S. infant mortality rate, these new initiatives may

moderate similar effects in the future.

Changes in the Demographic Composition of

Women Having Babies

OTA examined whether changes in the demographic composition of the population of women

“Recent developments pertaining to the expansion of Medicaid

eligibility are discussed further in ch. 3.
44 • Healthy Children: Investing in the Future

Table 2-8.—Federal Appropriations for Direct Public Health Programs, Selected Fiscal Years 1978.87

Fiscal year Fiscal year Fiscal year Fiscal year Fiscal year Fiscal year Fiscal year Fiscal year Fiscal year

Program 1978 1980 198’1 1982 1983 1984 1985 1966 1987

Maternal and child health services:

Current dollarsa. . . . . . . . . . . . . $410.3b $454.7b

$454.7b$372.0 $478.0C

$399.0 $478.0 $457.4 $496.75*

Constant 1978 dollarse . . . . . . . $410.3 $375.2 $338.7 $248.3 $293.5 $230.7 $260.2 $231.5 NAf

Community health centers:

Current dollarsg. . . . . . . . . . . . . . $225.0 $320.0 $323.7 281.2 $360.0 $351.35 $360.0 $396.0 $400.0

Constant 1978 dollarse . . . . . . . . $225.0 $264.0 $241.2 $187.7 $221.1 $203.1 $195,9 $200.4 NA

Migrant health centers:

Current dollarsg. . . . . . . . . . . . . . . $ 34.5 $39.7 $43.2 $38.2 $38.1 $42.0 $44.3 $45.4 $45.4

Constant 1978 dollarse . . . . . . . . $ 34.5 $32.8 $32.2 $ 25.5 $23.4 $24.3 $24.1 $23.0 NA

aE M~gee, Deputy ASS~~iate Bureau Director, Division Of Maternal and child Health, Health Services and Resources Administration, U.S. DePartrnent Of Health and

Human Services, personal communication, Rockville, MD, September 1%7; and S. Bailey, ‘(The Maternal and Child Health Services Block Grant, Title V of the Social

Security Act,” report no. S3-93 EPW, Congressional Research Service, Washington, DC, May 5, 1983. blncludes budgets for all programs that beginningIn fiscal year 1982 were consolidatedunder the MCH block grant.

CI nciudes $105 million from a supplemental appropriation.

dlncludes $1875 million from a supplemental appropriation.

%he medical care component of the Consumer Price Index was used to calculate 1978 constant dollars.

‘NA = not available

9p. Conway, Bud~et office, Bureau of Health Care Delivery and Assistance, Health Services and Resources Administration, U.S. Department of Health and Human

Services, Rockville, MD, personal communication, September 1987

SOURCE” Office of Technology Assessment, 1988

Figure 2-4.— Estimated State and Federal Funding for

Maternal and Child Health Services, 1978-84ab b

I

1978 1979 1980 1981 1982 1983 1984

Year

— Total (State and Federal)

–-–– Federal

. ● . ● ● State

astate funding data comparable to Federal funding data for the years 1978 and

1979 are not available.

bEstlmates unavailable for 1979 Value for 1979 is based on a Ilnear lnterpreta.

tlon between 1978 and 1980

SOURCE Office of Technology Assessment, 1988, based on actual Federal fund.

lng and reported data by State health agencies to the Public Health

Foundation, Washington, DC

having babies could be contributing to the slowdown in improvement in U.S. infant mortality

rates. The higher rates of low birthweight and

infant mortality among unmarried, black, and

adolescent women raises the question of whether

changes in these high-risk groups account for any

part of the slowdown.

Data on the percentage of all births to women

in various high-risk categories do not show any

substantial differences between the pre-1981 and

the post-1981 period (see table 2-IO). Although

the proportion of births to unmarried mothers in

the United States increased over the entire 1977-

84 period, the rate of increase slowed substantially

beginning in 1981.

The decline in the birth rate among teenagers

actually accelerated in the 1981-84 period. Data

not presented in table 2-10 show that the birth

rate for black unmarried women has generally declined since 1975, while the rate for white unmarried women has increased steadily. Moreover, the

increases in the number of births to unmarried

women in the United States since 1980 have been

entirely due to increases in births to unmarried

post-teenaged women (710).

Thus, it appears that if changes in the demographic composition of women having babies

have had any effect, the effect would have been

to accelerate the rate of progress in reducing U.S.

infant mortality. Demographic changes in the

composition of women having babies have not

played a role in the slowdown.
.

Chapter 2—Children Health Status: Current Trends ● 4 5

-

Table 2-9.— Percentage of Mothers Who Obtain Early, Late, or No Prenatal Care, by Race, 1977, 1981, 1984

Percentage of mothers Annual compound rate of change

1 977a

1981 b1984’ 1977-87- 1981-84

Whites:

Early prenatal cared . . . . . . . . . 77.3 % 79.4 0/0 79.90/0 + 0.7 0/0 + 0.20’0

Late or no prenatal caree . . 4,7 4.3 4.6 –0.2 + 2.3

No prenatal caref . . . . . . . 1.1 1.1 1.3 0.0 + 5.7

Blacks:

Early prenatal cared . . . . . . . . . 59.00/0 62.4 0/0 61.3 0/0 + 1 ,4 ”/0 –0.6%

Late or no prenatal caree 

. . 9.6 9.1 10.0 – 1.3 + 3.2

No prenatal caref . . . . . . . . . . . 2.8 2.8 3.4 0.0 + 6.7

au s DePar~~ent of He–alth and–H” man se~!~e~, public H ealfh ~ewtce, National center~or Health Statist ICS Vita/ Sfatlsflcs Of /he Un/ted staf.f3S 1977 ~0/ I Nafdlf t k

DHHS Pub No (PHS) 81 1113 (Washington DC U S Government Pnnt[ng Office, 1981)

bu s Department of Health and Human se~!ces, public Health SewIce, National Ceflter for Health Statl StlCS, V/fa/ Sta((st(cs of /he Un(fed .stafes. 7981 Vo/ / /Va/a/((}

DHHS Pub No (PHS) 85-1113 (Washington, DC U S Government Pnntlng Off Ice. 1985)

Cu s oepa~ment of Health and Human Semfces, publ(c Health SewIce, National Center fOr Health Statlstlcs “Advance Report of Final Natallty Statlst!cs 1984 Monthl}

V/ta/ Staf/sf(cs Repor7, VOI 35, No 4, Supp DHHS Pub No (PHS) 861120, Hyattsvllle. MD July 18. 1986

dEarly prenatal ‘are IS prenatal care beg!nn!ng wlthln first 3 months of Pre9nancY

eLate prenatal care IS prenatal care beg!nnlng after 6 months of Pre9nanc Y

fThjs group (mothers rece(vlng no prenatal care) IS a subset of the previous group (mothers recelvlng late or no prenatal care)

SOURCE Off Ice of Technology Assessment, 1988

Table 2-10.— Percentage of All Births in the United States to Mothers With Selected Demographic Risk Factors,

1977, 1981, 1984

Percentage of all births

Demographic risk factor 1977 1981 1984

Unmarried ., . . . . . . . . 15.5”/0 18.90/o 21.0 “/0

Black . . . . . . . . . . . . . . . . . . . . . . 16,4 16.2 16.2

Teen (<20 years) . . . . 17.2 14.8 13,1

Unmarried teen ., . . . . . . . . . . . 7.5 7.4 7,4

Average annual compound rate of change

1977-81 1981-84

+5. 1 0/0 + 3.6%

–0,3 0.0

–3.7 --40

–0.3 0.0

Low education ( <12 years) . . 26.2 22.9 20.9 – 3.3 – 3.0

aU S Department of Health and H u man Serv ces Pu bl IC Health Serv!ce, National Center for Health Statist ICS, Vftal Sfafwtlcs of the United Stafes 1977 Vo/ 1 Nafallfk

DHHS Pub No (PHSI 81.1113 (Washington. DC U S Government Pnnt!ng Office, 1981)

bu s Department of Health and Human SewIces publlc Health Service National Center for Health Stat lstlcs, Vita/ Sfaf(s(lcs of fhe Ul?lted StateS 198 f ~0/ / Nafa//t\

DHHS Pub No (PHS) 851113 (Washington, DC U S Government Pnntlng Off Ice, 1985)

‘U S Department of Health and Human Serv!ces, Publ IC Health Service Nat tonal Center for Health Stat I st ICS u n pu bl I shed data I n preparat Ion for V/fa/ S (at/ sl~cs o f

the Un(ted Sfates 1984 Vo/ / Nata/(ty (Hyattsvllle, MD, 1986 )

SOURCE Office of Technology Assessment 1988

Conclusions

Taken together, the evidence suggests that the

leveling off of the U.S infant mortality rate in the

early 1980s is the result of a combination of factors, each contributing to the trend in different

amounts. An increase in reported live births at

the birthweight interval under 500 grams clearly

plays an important—and probably dominant—

role in the slowdown, although the magnitude of

its effect cannot be estimated with precision. Increasing resuscitation of the tiniest infants in the

early 1980s, perhaps resulting from the recognition by obstetricians and neonatologists that a few

of these deliveries might be salvaged and from

ethical concerns arising from the “Baby Doe” controversy, 17 may have been responsible for greater

‘

q

Following the birth of Baby Jane Doe (an infant born with multiple birth defects ), Federal regulations were written to require that

rates of resuscitation. Furthermore, better birth

reporting and a higher rate of resuscitate ion may

have resulted from the increasing concentration

of low birthweight births in regional perinatal

centers.

Other factors may also have contributed to the

recent slowdown in improvement in the U.S. infant mortality rate, although available evidence

suggests that their impact would be modest. These

include the natural maturation of technologies for

neonatal intensive care that diffused widely in the

mid-1970s and that are now improving outcomes

of the smallest birthweight babies; the completion

of the process of diffusion of abortion services in

hospitals treat severelyw’~erel>r handicapped Intants ~~~er the (~blect]c~n~ ( ,t

their parents Th(w re~ulat i(~n~ were later declared ~]nconstit~]t](~n,~l

b]’ the Supreme Court
46 . Healthy Children: Investing in the Future

the late 1970s; and the deterioration in economic

conditions and in the availability of subsidized

health care services for pregnant women and

children.

The key to the slowdown puzzle appears to lie

in the deteriorating U.S. birthweight distribution,

most especially increasing numbers of the tiniest

newborns. At present, OTA is unable to identify

the reasons for the rapid increase in the frequency

of reported births in the lowest birthweight categories, but the most likely explanation is the

phenomenon of better birth reporting and increased resuscitation of the tiniest newborns. If

the recent slowdown in improvement in the U.S.

infant mortality rate is, indeed, largely a reporting/resuscitation phenomenon, the implications

for public policy may not be very different from

those that would exist if the slowdown were found

to be the result of environmental or medical factors at work in the prenatal period. If very low

birthweight births in the United States are just being counted more accurately, then the country has

even more of a problem of infant mortality than

we thought. And if extremely tiny newborns in

the United States are to be increasingly resuscitated, with high costs and low probability of success, then we need to find effective methods of

preventing extremely low weight births in the first

place. Thus, the slowdown question may be

moot; the real question is what interventions

make a difference to low birthweight and, hence,

infant mortality.

CHILDREN’S HEALTH BEYOND INFANCY

The importance of infant mortality as a general indicator of children’s health, coupled with

the poor showing of the United States compared

to other developed nations, tends to divert attention from other important dimensions of children’s

health, particularly in the postinfancy period.

About 44 percent of deaths among children under 15 years of age in 1984 occurred in those over

1 year of age. But mortality is only one indicator

of health status, and other aspects of health become increasingly important as children develop.

Unfortunately, good indicators of children’s

health status beyond infancy that allow monitoring of trends over time or differences among

groups of children are hard to find (354,612,756).

Data collected regularly through national health

surveys on measures such as the prevalence of

chronic conditions or self-reported health status

are not easily interpreted. An increase in the prevalence of chronic conditions, for example, can be

due in part to better diagnosis, increased medical access, or even medical advances that keep

children alive, though chronically ill, who would

otherwise have died. Changes in self-reported

health status may in part reflect changes in such

things as individuals’ expectations about what

constitutes good health (756). Even a seemingly

objective indicator of children’s health status (e.g.,

the number of bed-disability days per child) may

be affected by changing attitudes about how childhood illnesses should be treated. ’8

Several key indicators of young children’s health

status have recently been suggested by the University of North Carolina’s Child Health Outcomes

Project:

●

●

●

●

immunization status,

prevalence of growth stunting in high-risk

populations,

elevated levels of lead in the blood, and

non-motor-vehicle accident fatalities.

These indicators were selected by the leaders of

the project because they meet a number of important conditions: 1) they are widely accepted

by experts in the field as reflecting important

health policy concerns, 2) they are understandable, 3) data for their assessment and monitoring are easily obtainable, 4) the indicators relate

to a condition that can be prevented or greatly

reduced through known and available interventions, and 5) dissemination of information about

]aFUrthermore, in the case of the annual National Health Interview Survey, changes in questionnaire design also make intertemporal comparisons suspect. From 1981 to 1983, the percentage of

the child population reported by the survey to have activity limitations increased by 32 percent, but this increase is largely attributable to changes in questionnaire design (711).
Chapter 2—Children Health Status: Current Trends Ž 47

—

these indicators will be likely to promote improvement in major social and health policies.

Beginning with the list of four indicators of children’s health suggested by the Child Health Outcomes Project, OTA deleted one indicator (elevated blood lead levels19) and added the following

two:

• total age-adjusted mortality rates, and

● mortality rates from “external” causes, including motor vehicle accidents, other accidents, and inflicted injuries.

Total age-adjusted mortality rates give a good

picture of how one dimension of children’s outcomes differs among groups in the population and

over time. The mortality rate from “external”

causes is a general index of “injury-related deaths”

and reflects the difficulty that professionals have

in distinguishing between injuries that are accidental and those that result from abuse or neglect .20

Children’s Mortality Rates

U.S. children’s mortality rates by age of death

from age 1 up to age 19 and by race are presented

in table 2-II. For any given age of death from 1

to 19, children’s mortality rates declined steadily

from 1968 to 1984. In any given year and for both

whites and blacks, children’s mortality rates decline with age until ages 15 to 19, at which point

they increase greatly. Among white children, mortality rates for 1.5- to 19-year-olds are considera1“The prevalence of elevated blood levels in children is not inL I uded here becau~e the quality of monitoring of these levels has

~cri(~usl }’ eroded SI nce 1 Q81 when the Federal MCH block ~rant enabled States to set their own public health priorities.

“See discussion ot accidental injuries in ch. 7 and child maltreatment In ch. 8.

bly greater than the mortality rates for the other

age groups. With the exception of mortality rates

for 15- to 19-year-olds (which show the differential impact of automobile accidents and suicide),

mortality rates are much greater among black children than among whites.

For white children, the rate of decline in mortality rates in the 1981-84 period exceeded the rate

of decline during the 1977-81 period (or the 1968-

81 period for that matter) for all age groups with

the exception of ages 10 to 14. For blacks, the rate

of improvement in the 1981-84 period was superior to the past only for ages 1 to 4.

An examination of the causes of children’s

deaths in 1984 provides some understanding of

the overall patterns discussed above. Leading

causes of death and associated mortality rates for

children up to 19 years of age are shown in table

2-12. External causes (e. g., accidents, suicide,

homicide) are responsible for just 2.9 percent of

all infant deaths, but this percentage increases to

43.5 percent, 51.0 percent, 57.4 percent, and 77.2

percent for ages 1 to 4, ages 5 to 9, ages 10 to 14,

and ages 15 to 19, respectively.

In summary, for both white and black children

in the United States, mortality rates have continued to decline for all age groups. Furthermore,

with the exception of ages 10 to 14, the rates of

decline for whites have generally been greater during the 1981-84 period than in the past; for blacks,

with the exception of ages 1 to 4, the rates of decline have been less than the past. In 1984, black

children aged 1 to 15 had a mortality rate 30- to

70-percent greater than that of whites. An examination of the causes of death indicates that external causes in general and motor vehicle acciTable 2-11 .—U.S. Children’s Mortality Rates by Age and Race, Selected Years 1968-84

— —

Mortality rate

a -

—

Whites Blacks

Year 1-4 5-9 10-14 15-19 1-4 5-9 10-14 15-19

1968 ... . 78,3 41.7 38.9 102.0 -

151.7 61.9 58.9 149,4

1973 . 70,9 38.6 38.3 107.2 126.2 56.4 53.3 134,2

1977 ., ... . . . . . 61.1 31.4 33.4 99,6 103.2 44.4 41.9 100.1

1981 . . . . . . . 54.3 27.5 28,5 91.8 93.6 38.8 36.6 85.7

1984 . . . . . . . . . . . . . 46.9 23.3 27.3 81.9 78.8 36.1 34.4 77.9

a~h~ ~OrtalllY ~a!~ ,S cjef, nerj here as the number of children {n a specified age- g~oup who d!e Per 100.000 P~Pulatlon I n that ‘9e 9rou P

SOURCE U S Department of Health and Human Services Pubhc Health Service National Center for Health Statlstlcs, un publ I shed data from the U S vital statistics

Hyatt swlle MD 1982 1986
48 ● Healthy Children: Investing in the Future

—.

Table 2-12.— Leading “Causes” of Death Among U.S. Infants and Children, 1984

—

Mortality rate by age’

Cause of deathb <1 1-4 5-9 10-14 15-19

All causes ... ... ... . . . . . . . . . . . . . . . . 1,086.6 –

51.9- 25.1 28.2 81.9

Malignant neoplasms (140-208) ., . . . . . . . . . 3.1 4.0 3.6 3.5 4,8

Major cardiovascular disease (390-448) . . . . 29.7 2.9 1.4 1.4 2.7

Pneumonia (480-486) . . . . . . . . . . . . . . . . . . . . . . 18.7 1.4 0.5 0.4 0.5

Congenital anomalies (740-759) . . . . . . . . . . 234.4 6.7 1,5 1.4 1.3

Certain conditions originating in the

perinatal period (760-779) . . . . . . . . . . . . 512.4 1.0 0.1 0.0 0.0

Symptoms, signs, and ill-defined conditions

(780-799) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 161.1 1.8 0.3 0.3 1.3

All other diseases (residual) . . . . . . . . . . . . . 49.3 6.6 3.1 3.2 4.6

Motor vehicle accidents (E810-E825) . . . . . 4,4 6.9 6.2 7.1 34.6

All other accidents and adverse effects

(E800-E807/E826-E949) . . . . . . . . . . . . . . . . . . . 18.6 12.9 5.5 5.9 10.5

Suicide (E950-E959) . . . . . . . . . . . . . . . . . . . . . . — — 0.0 1.3 9.0

Homicide and legal intervention

(E960-E978) . . . . . . . . . . . . . . . . . . . . . . . . . . 6.5 2.4 0.9 1.6 8.3

All other external causes (E980-E999) . . . . 1.6 0.4 0,2 0.3 0.8

a

The rnortallty rate IS defined here as the number of deaths per 100,000 population In each specified group

blnternatlonal Classlflcatlon of Diseases code number IS In parentheses

SOURCE Office of Technology Assessment, 1988, calculated from unpublished data from theUS vital statistics, prowded by the National CenterforliealthStatlstlcs,

Publlc Health Service US Department of Health and Human Services, Hyattsv!lle, MD, 1986

dents in particular represent a large proportion

of total deaths for both whites and blacks and for

all ages beyond infancy. The continued improvement in postinfancy death rates is probably due

in large part to reductions in accidental death rates

during the period. Nevertheless, accidental and

other injuries continue to be responsible for the

majority of deaths in school-aged children.

Children’s Immunization Status

A detailed review of the most recent evidence

on the immunization status of children in the

United States is presented in chapter 6. In brief,

the percentage of 5- and 6-year-olds who are immunized has been between 91 and 94 percent

throughout the 1980s (693), very close to the national target for 1990 set by the Public Health

Service (679). This high level of immunization is

primarily due to the fact that all States have laws

requiring proof of immunization prior to school

entry (49). Reported immunization levels in licensed day care centers are also nearing the target level of 95 percent. In the school year 1985-

86, according to the Licensed Day Care Center

Facilities Immunization Survey, 93 percent or

more of the children attending licensed day centers

had had their basic immunizations (590).

In contrast, the percentage of 2-year-olds who

have been immunized in the United States is well

below the 1990 target objective of 90 percent and

has shown little progress since 1980. From 1979

to 1985, the percentage of children under 2 years

of age who have been immunized against mumps

(the lowest percentage to begin with) increased;

the percentage immunized against rubella (German measles) actually declined slightly. The percentage of children under age 2 who have received

polio vaccine, measles vaccine, or the combined

diphtheria, tetanus, and pertussis vaccine (DTP)

hardly changed (692).

The United States has significantly lower immunization rates for infants than several other industrialized countries. The percentage of fully immunized infants (O to 1 year of age) in the United

States against DTP (37.4 percent) is less than onehalf the percentage in the United Kingdom (84 percent), Canada (80 percent), Sweden (94 percent,

DT only), France (95 percent), Spain (97 percent),

Italy (99 percent, DT only), and Israel (95 percent) (723,765).

Although it is apparent that the United States

enjoys high levels of immunization overall, though

not as high as they should be for very young children, considerable differences persist with respect

to race and geographic location. National survey

data indicate that differences exist between white

and nonwhite as well as urban poverty areas and
suburban and rural areas. For example, the percentages of children immunized in central cities

are substantially lower than percentages in noncentral-city regions for both preschool-age and

school-entry-age children. In 1985, 31 percent of

preschoolers living in U.S. central cities were not

adequately immunized against polio; 30 percent

were not adequately immunized against mumps.

Almost one-fifth of 5- to 6-year-old children living in U.S. central cities had not received three

or more doses of polio vaccine, the minimally

acceptable level for immunity. Nearly two-fifths

of that group had not received the optimal four

or more doses of polio vaccine. Many illegal aliens

living in U.S. central cities have not been immunized (287).

Growth Stunting

A high prevalence of growth stunting—the failure of a group of children to achieve a distribution of heights that conforms to standards established for a well-nourished healthy population of

children —is an indicator of widespread poor nutrition or chronic infection in that population

Chapter 2—Children’s Health Status: Current Trends • 49

(426). The Centers for Disease Control monitors

the height of a group of low-income children in

the United States. In these children, the prevalence

of growth stunting (as measured by the number

of children who failed to meet the fifth percentile

of age-appropriate height) declined slowly, from

9.5 percent in 1976 to about 8.4 percent in 1983

(646,683).

Conclusions

OTA’s examination of young children’s health

status in the United States suggests that improvements have continued throughout the 1980s. Indicators of children’s health, though obviously

limited, show improvement throughout the 1980s

for both poor and nonpoor children. Yet when

data are available to compare experience in the

early 1980s with that of the late 1970s, it is clear

that the pace of improvement for poor children

has declined. Moreover, inequalities between poor

and nonpoor children and racial inequalities in

children’s health status have persisted throughout the period and, on some measures of children’s

health, have even worsened.
Chapter 3

Children’s Access to Health Care
CONTENTS

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ........ . . . . . . . . . . . . . 53

Children’s Use of Health Services. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53

Children Without Health Insurance.. . . . . . . . . . . . . . . . . . . . . . . . . . ........ . . . . . . . . 57

Limitations of Private Health Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 59

Medicaid: Features That Pose Barriers Access . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 60

Eligibility Requirements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 61

Covered Services and Limitations. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62

Policies Governing Payment to Providers. . . . . . . . . ........ . . . . . . . . . . . . . . . . . . . 6 3

Administrative Procedures. . . . . . . . . . . . . . . . . . .. . . . . . . ....... . . . . . . . . . . . . . . . 65

Alternatives to Private and Public Health Insurance for Children ..... . . . . . . . . . . . . 65

Maternal and Child Health Services Block Grant . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65

Preventive Health and Health Services Block Grant . . . . . . . . . . . . . . . . . . . . . . . . . . . . 66

Head Start . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 66

Community Health Centers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 66

Migrant Health Centers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67

Indian Health Service . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67

Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67

Box

Box No. Page

3-A. The Rand Corp.'s Health Insurance Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57

Figure

Figure No. Page

3-1. Health Insurance Status of Children Under Age 13, by Income Level,

united States, 1986 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Tables

Table No.

3-1.

3-2.

3-3.

3-4.

Percentage of Children With a Regular Source of Medical

and Mean Number of Medical Visits, United States, 1980

. . . . . . . . . . . . . . . . . . . . 58

Page

Care

. . . . . . . . . . . . . . . . . . . . 54

Number of Physician Contacts Per Year Per Child Under 18 Years of Age,

by Family Income, United States, 1985. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55

Number of Annual Visits to a Physician in an Ambulatory Facility by

Children 0 to 17 Years of Age, by Health Status, United States, 1981. . . . . . . . . . 55

Distribution of Children’s Visits to Physicians by Family Income and Site

of Care, United States, 1980 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 56
Chapter 3

Children’s Access to Health Care

INTRODUCTION

An issue of paramount importance in any discussion of children’s health is whether young children have access to health care when they need

it. Although most children are generally healthy,

almost all need occasional treatment for acute illness and a few have chronic conditions or disabilities that require more regular care. The vast

majority of Americans would probably agree that

when medical care can make a difference, children should be able to obtain care regardless of

their income level, insurance status, race, or place

of residence (2). This chapter examines how well

the United States measures up to that ideal and

how Federal policies affect young children’s access to health care.

How does one measure access? Two general approaches, each with limitations, are typically employed. One way is to examine differences in rates

of use of services among groups of children defined by income, race, or insurance status (controlling for differences in health status). Not all

differences in rates of use necessarily reflect inequities, however. If health care is bought and

sold, and individual beliefs, attitudes, and preferences differ, some differences in peoples’ choices

are to be expected. Moreover, the choices of wellinsured middle-class Americans may be distorted

by an insurance system that encourages too much

use of health care (507,661), so not all deviations

from the patterns of use of the well-insured are

necessarily undesirable.

A second way to measure access is to compare

the health care that individuals actually receive

with professionally defined standards of needed

care. The limitation of this approach is that professional standards are sometimes overly lavish

or are biased toward receipt of technical services

and against receipt of information and caring. Despite the limitation of both approaches to measuring equity of access, they are the only practical methods, and both are used in this chapter.

In addition to considering children’s access to

health care, this chapter examines potential barriers to access, Whether a child has health insurance and the extent and quality of the insurance

coverage have important implications for access.

A substantial number of children in the United

States have no private health insurance and are

not eligible for Medicaid. This chapter discusses

children’s health insurance status and the adequacy of existing health insurance, both private

and public, in providing children with access to

medical care.

For those children who do not have health insurance, Federal programs of direct care such as

the Maternal and Child Health Services block

grant program, the Preventive Health and Health

Services block grant, the Head Start program,

community health centers (CHCs), migrant health

centers (MHCs), and the Indian Health Service

(IHS) are especially important. These programs

are described in this chapter.

CHILDREN’S USE OF HEALTH SERVICES

One important indicator of access to needed tive and therapeutic services or to refer the child

health services for children is the availability of to appropriate sources for those services.

a regular source of ambulatory medical care. A

regular source of ambulatory care may be a pri- In 1980, according to the National Medical Care

vate physician or group practice, a public clinic, Utilization and Expenditure Survey (NMCUES),

or a hospital outpatient department—but in any the vast majority (92 percent ) of children 18 years

event should be able either to offer a child preven- old and under had a regular source of medical care

53
54 ● Healthy Children: Investing in the Future

(86) (see table 3-l). NMCUES data are based on

respondents’ self reports, however, so some “regular sources of care” may be emergency rooms or

other settings that most experts would agree are

inadequate and costly sources of regular care for

children. Family income made a difference in the

percentage of children with a regular source of

care, although the differences were not dramatic

(about 85 percent of children with family incomes

below the Federal poverty level] had a regular

source of care v. 94 percent of those with incomes

more than twice the poverty level), Race/ethnicity also made a difference in the percentage of children with a regular source of care in 1980, although again the differences were not large (94

percent of white children had a regular source of

care v. 86 percent of black children and 85 percent of Hispanic children).

Even though NMCUES did not find large income-related or racially related differences in the

number of children with a regular source of care

in 1980, it did find large differences in the annual

number of medical visits by children classified by

family income and race/ethnicity (see table 3-1).

Children whose family incomes were below the

Federal poverty level in 1980 had virtually the

same average number of medical visits as children

with family incomes at least twice the Federal poverty level (3.6 visits per year). On the other hand,

children whose family incomes were just above

the poverty level—the near poor—had substantially fewer visits per year (2.6 visits per year) than

children living in poverty, about one-half of whom

were covered by Medicaid.

NMCUES found striking differences in the

number of medical visits by children classified by

race/ethnicity in 1980 (3.7 medical visits for white

children v. 2.1 visits for blacks and 2.4 visits for

Hispanics). Much of the difference by race/ethnicity can probably be explained by the correlation of race/ethnicity with family income and

place of residence. Some of it may be explained

by the possible correlation of race/ethnicity with

other factors that affect parents’ attitudes about

seeking medical care (e. g., family size).

‘The Federal poverty level in 1980 was $8,385 for a family of four

(382). The 1987 Federal poverty level for a family of four is $11,203

(382).

Table 3-1 .—Percentage of Children With a Regular

Source of Medical Care and Mean Number of

Medical Visits, United States, 1980a

Regular source

of care

Target population Yes (%)

All children 0-18 yrs. 91.9

Age (yr):

0-2 . 94.1

3-5 92.8

6-11 . . . . . . ., 92,5

12-18 .. . 90.3

Race/ethnicity:

Whit e 94.0

Black ... ., 86.0

Hispanic ., .. . 84.7

Family income levelC

<100% 85.3

100-1 500/ o 90.7

150-2000/ o 89.6

>200% 94.3

Region:

Northeast . . . . . 93.8

North central .. . 96.3

South ., 89.7

West . . . . . . ., 88.1

Population density:

SMSAd central

cit y 88.9

SMSAd non-central

city , 93.6

Urban non-SMSA 91.6

Rural . , 93.2

SEb

0.7

0.9

1.2

1,0

1.0

0.7

2.3

3.0

2.4

1.3

2.3

0.7

1,0

0,9

1,4

1.6

1.6

1.0

2.1

1.8

Number of

medical visits

Mean

3,3

5.3

3.3

2 6

3.1

3.7

2.1

2,4

3.3

2.6

3.0

3.6

3.6

3.5

3.0

3 4

3.0

3.7

3.3

3.1

Mean SEb

0.1

0.1

0.2

0.1

0.1

0.1

01

0.2

0.2

0.2

0.2

0.1

0.2

01

0,2

0.2

0.1

0.2

0.2

0.3

‘Data from the National Medical Care Ut tllzat ton and Ex pendlture Survey

(N MCUES)

bSE standard error of estimate

CFam,ly , ncome levels are de f(ned as the faml 1} s standing relatlve to !h~ 1980

poverty Ilne

dSMSA Standard Metropolitan Statlstlcal Area

SOURCE J A Butler W D Winter J D Singer et al Medical Care Use and

Expenditure Among Chtldren and Youth In the United States Analys!s

of a National Pro babtl Ity Sample Pedfatr(cs 76(4 I 495507 1985

Data from the National Health Interview Survey for the years 1982 to 1985 suggest that familyincome-based differences in the percentage of children who have at least one contact with a physician in the course of a given year have remained

fairly stable in the recent past -

(711,711a). In 1985,

children from families with low incomes had fewer

contacts with physicians per child than did children from families with high incomes (see table

3-2),

An analysis of data from the Child Health Supplement of the 1981 National Health Interview

Survey indicates that income-based differences in

the use of physicians’ services are especially pronounced among children who have health prob-
Chapter 3—Children Access to Health Care ● 5 5

Table 3-2.— Number of Physician Contacts Per Year Per Child Under 18 Years of Age,

by Family Income, United States, 1985

Number of contacts by-place of contact

Telephone Office Hospital Other

Family income contact visit visit visit All visits All places

Under $10,00 0 0 5 1,9 0.9 0.6

$10.000 -$19! 99 9

3.4 3.8

0 7 2.0 0,8 0.5 3.3

$20,000-$34,99 9

3.9

0 8 2.7 0 4 0 5 3.6 4.4

$35,000 or more ., 0.9 3.1 0.5 0.4 4.0 5,0

SOURCE U S Zkpartm~nf ‘,f HoJt b dnrj Human Ser, Ices Publ(c Health Serv(ce National Center for Health Statlstlcs Current Est[mates From [he Ndtlonal Fiealt h

I n t 6, r, If, t, ‘3(J r, w ~ u s 1985 VIIa/ and HPalfh Staf~sf/cs Series 10 NO 160 (Washington DC U S Government Prlntlng Off Ice 19861

lems (458). In 1981, as shown in table 3-3, healthy

children from families with low incomes (under

$10,000) had at least as many physician visits as

healthy children with higher family incomes. But

among children suffering from health problems

in 1981, those from families with low incomes

made fewer physician visits than those from families with higher incomes.

Efforts to interpret income-related and other

demographic differences in children’s use of medical care are impeded by a lack of clear evidence

about how medical care use affects health outcomes. For children in the first 2 years of life,

however, several immunizations and developmental assessments are recommended by the American Academy of Pediatrics and others (17,690 ).2

In light of these recommendations, low levels of

medical care use are more telling for children under 2 years old than for older children. According to NMCUES, 8 percent of all children under

age 2 in 1980 had had no medical visit in the previous year (86). Among children from families of

different family-income levels, the breakdown was

21ntcJrm~tl(ln on the recommended frequency and content of wellch]ld care, a~ well as the eflectivenes~ ot such care, is provided in

ch b

as follows: 13 percent of children with family incomes between 100 and 150 percent of the poverty level (the near poor) had had no medical visit;

10 percent of children with family incomes below

the poverty line had had no medical visit; and

only 6 percent of children with family incomes

of more than twice the poverty level had had no

medical visit.

In addition to family income, a child’s insurance status is a critical determinant of the use of

medical services. According to NMCUES, almost

18 percent of children under 2 years of age without insurance coverage in 1980 (who are heavily

concentrated among the poor and near poor) had

had no medical visit in the previous year (86),

The poorest children are likely to be eligible for

Medicaid, and these children have higher rates of

use of some health care services than do near-poor

children with family incomes that exceed Medicaid eligibility standards. An analysis of NMCUES

data for 1980 found that children with Medicaid

had as many general checkups and immunizations

as middle-income privately insured children (except for middle-income children enrolled in health

maintenance organizations) (45). Among children

Table 3-3.— Number of Annual Visits to a Physician in an Ambulatory Facility by Children O to 17 Years of Age,

by Health Status, United States, 1981a

Average number of annual visits-to a physician

All chiIdren For children in good For children in fair

Family income O to 17 years of age or excellent health or poor health

Low incomeb 

., 4.5 4.1 9.6

Middle incom e

C 4 2 3.9 12.3

High incom e

d 4 2 4.0 12.4

aE)dt a f rrJu’ t ho ha! I o n al Health I n ter ) Ie A SU we] 1981 Ch I I d Health Sup p Ieme n I

b Farn I~ I:or e of I ess t har] $10 000

L Fam I I, F c orne 04 $10000 fo $24 999

d F ~rn, I ~ , n cc, me o f $25000 Or m ~ rp

SOURCE P W N c w a- h ec k ar C FJ Hal fr, n Arcess tc Amhu Iatork Care Services for Economical 1} Dlsadvantaqed Chtldren Ped/afr/cs 78(5) 813819 1986
56 ● Healthy Children: Investing in the Future

whose family incomes were under $10,000, those

with health problems who were covered by Medicaid visited a physician more often than did those

with health problems who were not covered (458).

Even so, children with health problems who are

covered by Medicaid do not visit physicians as

frequently as children with health problems from

higher income families (458).

A child’s family income and insurance status

affect not only the frequency of medical visits,

but also the site of ambulatory care. In 1980,

according to NMCUES, visits to emergency rooms,

outpatient departments, and health clinics accounted for a much larger share of visits to physicians made by children with family incomes under $10,000 than by children with higher family

incomes (see table 3-4). Although children from

low-income families with no insurance had the

lowest levels of use of physicians’ services, they

received more of their care in physicians’ offices

than did children covered by Medicaid.

For children who have health insurance, the

characteristics of their insurance plans are important determinants of the number and kinds of

visits children make to health care providers. Insurance plans vary with respect to covered benefits, requirements for deductibles and copayments,

utilization controls or limits enforced by the plan,

provider payment levels, and administrative procedures. Although there is little direct evidence

relating particular characteristics of insurance

plans to children’s use of health services, a landmark study of almost 6,000 people by the Rand

Corp. showed that the structure of a health insurance plan can be a powerful influence on children’s use of medical care (370) (see box 3-A).

To summarize, the evidence presented in this

section points to a consistent relationship between

family income and the use of ambulatory medical care for children—a relationship that appears

to be stronger for sicker children. Because this

relationship is mediated by the availability of

health insurance coverage, however, very poor

children who have access to Medicaid are more

similar to affluent children in their frequency of

use of services than are low-income uninsured

children. Low-income children without Medicaid

or private health insurance tend to use ambulatory health services less frequently than any other

children.

Although children covered by Medicaid tend

to use health services more frequently than lowincome children without insurance, the settings

in which these two groups of children receive care

are far more like one another than like settings

used by children from higher income families. In

comparison to nonpoor children, children with

Medicaid receive a greater percentage of their ambulatory care in emergency rooms, outpatient departments, and clinics and a smaller percentage

in physicians’ offices.

The Rand health insurance experiment showed

that the structure of health insurance can have

dramatic effects on children’s use of medical care.

Although Medicaid children are not subject to coTable 3-4.–Distribution of Children’s Visits to Physicians by Family Income and Site of Care, United States, 1980

-.

Total number Percentage distribution of visits by site of visita ‘

-

of visits Physician Health center Emergency Outpatient ‘

in thousands All places office or clinicb

room department Otherc

All child rend. . . . . ... 199,911- 100.00/0 - 66.8 % 9.3% 1

-O.O % 10.4 % 3.5%

Children with family income

> $10,000. . . . . 154,120 100.0 71,9 8.4 8.7 7.3 3,6

Children with family income

<$10,000 . . . . 45,791 100.0 49.5 12.2 14,3 20.8 3.2

Medicaid. . . . . . . . . . . . . . 22,649 100.0 50.4 15.1 15.9 15,3 3.2

Private insurance . . . . . . . 18,255 100.0 45.5 9.1 12.5 29.4 3,2

No insurance . . . . . . 4,887—.100.0 59.0 10.7 13.5 13.7 3.1

aEXC{udes telephone contacts

blnc[udes vlslts to community health centers and school cllnlcs

Clncludes laboratory and home v!s!ts as well as vIs Its to unspec!f!ed places

dlncludes all children with at least one ambulator vlslt

SOURCE U S Department of Health and Human Services Pubhc Health Service National Center for Health Statlstlcs National Medical Care Utlllzatlon and Expendl

ture Survey Hyatt svllle MD 1980
Chapter 3—Children Access to Health Care • 57

insurance requirements, other characteristics of later section in this chapter will discuss elements

the Medicaid program may be important in ex- of the Medicaid program, particularly aspects of

plaining the observed differences in frequency of its implementation, that may be important invisits and settings of care for these children. A fluences.

CHILDREN WITHOUT HEALTH INSURANCE

The health insurance status of American children can be estimated from various national surveys. One of these is the U.S. Census Bureau’s

Current Population Survey. That survey has

asked about health insurance coverage every

March since 1979 and therefore gives a consistent and timely picture.3

‘Other national +urve}’s that prt}vide Information on health insu rance status Include the N“a t iona 1 Health Interview Sur\’e>, the

Natlona] Nled]cal Care Expenditure Survey of 1Q77, and the National hled~cal Care Uti]lzatlon and Expenditure Surve}’ ot IQ80

An analysis of the Current Population Survey

shows that 63 percent (about 28 million) of the

nearly 45 million children under age 13 in 1986

were reported to be covered by private health inThe’ estimated rates of insuredness pr(~~lded b~ the~t’ ~ur~t}r~ dltt(r

s] ightl v trom those ok the Current Popu la t I(>n S u ri’(’} ( o.?(I I Th L,

.

strenxths and weahnesse~ ot the Current Popul at I[>n Sur\re\ rt>la -

t i Ye t{) these iur~.ey’~ are dIsLu<A ]n K S\\’artz, ‘A N[ltt> on the’

Strengttls and \$’ea~rlesses of Lls]ng the CI)S TO Estimate Children s

Health Insurance Coverage, L)TA background paper, to be a\a[l -

able tr{]m the N’atlona] Technical Information Ser\rice, Sprl n~t Ielcl

l’A
58 ● Healthy Children: Investing in the Future

surance, including parents’ employer-based group

health plans and policies purchased directly by

the family (632).4 An additional 16 percent of children under age 13 (about 28 million children) were

covered under a public health insurance plan—

most of them by Medicaid but a few by Medicare5

and the Civilian Health and Medical Program of

the Uniformed Services, the insurance program

for dependents of military personnel. Another

3 percent (just under 2 million) were covered by

a combination of public and private health insurance.

As shown in figure 3-1, poor children and nearpoor children (those with family incomes between

100 and 150 percent of the poverty level) are more

likely to be uninsured than more affluent children

are. In 1986, 61 percent of all children under age

13 who were reported to be uninsured by the Current Population Survey were from either poor or

near-poor families (632).

The Current Population Survey overestimates

the population of children without health insurance, because it does not directly ask about

whether children have health insurance coverage

through a noncustodial parent; consequently, children who are covered by a private policy bought

by a noncustodial parent are incorrectly listed as

uninsured. Although it is impossible to precisely

adjust the estimates to correct for the Current

Population Survey’s upward bias, OTA estimates

that the true percentage of children under 13 years

old who were without health insurance in 1986

was somewhere in the range of 14 to 19 percent. b

Those percentages translate to between 6.26 and

8.5 million uninsured children.

Data from the Current Population Survey indicate that there has been no progress in addressing the problem of a lack of health insurance

among children in recent years.7 In 1980, the per4

Self-purchased insurance is generally a great deal more expensive to the family than employer-based group health policies offering coverage of employees’ dependents and covers only about 6 percent of all privately insured children (185).

‘Children eligible for Medicare include those with end-stage renal disease and those who meet the Medicare criteria for blind and

disabled.

See app. D for the method used to calculate this range.

7

The upward bias in the Current Population Survey’s estimate

of the number of uninsured children should not appreciably affect

comparisons across years.

Figure 3-1.— Health Insurance Status of Children

Under Age 13, by Income Level, United States, 1986a

100

90

80 “

70 -

60 “

50 -

40 “

30 “

20 -

10 -

0 -

L

150-2000/, > 200?

Family income level as a percentage of

the Federal poverty level

❑Combination Public

❑ Private No insurance

aThis figure is based on data from the Current Population Survey. Because that

survey does not reflect insurance held by noncustodial parents, the percentage of children without health insurance—especially the percentage of children from higher income families—is probably overestimated

SOURCE Office of Technology Assessment, 1988, based on K Swartz, Urban

Institute, statistical analysts of the Bureau of the Census’ Current Population Survey, 1988, prepared for the Office of Technology Assessment, U.S. Congress, Washington, DC, 1988.

centage of children under age 13 who were reported to be uninsured was 17 percent; by 1984,

the rate had increased to 18 percent (632); and

by 1986, it was 19 percent.

What does it mean to be without health insurance of any kind? Lack of health insurance coverage exposes family members to a small risk of

catastrophic health care expenses beyond the resources of all but the wealthiest of American families. In 1980, about 300,000 noninstitutionalized

children O to 18 years of age (0.36 percent) incurred out-of-pocket medical expenses above

$2,000 (417). If a child’s catastrophic expenses involve long-term disability and institutionalization,

eligibility for Medicaid may reduce the family’s

financial exposure. 8 In some circumstances, the

‘To the extent that catastrophic medical expenses are incurred in

institutions, some children can become eligible for Medicaid under
Chapter 3—Children Access to Health Care • 5 9

rules for Medicaid coverage may encourage the

keeping of children in hospitals who could be

cared for at home. g

If a child’s catastrophic exthe Federal Supplemental Security Income (SSI) program To be eligible for SSI, a child must have a disability that is expected to last

at least a year (or until death) and must have income and resources

that do not exceed established limits. By statute, the income of parents must be deemed available to a child in this category if the child

iS living in the same household as the parents. After 1 month in an

institution, however, a child iS no longer considered to be living

in the family household, and the parents’ income and resources are

Irrelevant to the eligibility determination. (See Sec. 1614(f) of the

Social Security Act.)

‘Technology-dependent children, those requiring the use of a medical device to compensate for the loss of use of a body function and

substantial and complex daily nursing care to avert death or further disability, are striking examples of children with such catastrophic expenses. See OTA’s technical memorandum TechnologyDependent Children (664) for a discussion of the Medicaid coverage issues.

penses do not involve institutionalization, the

family must spend itself into poverty to be eligible for Medicaid.

In the absence of Medicaid coverage, the families of uninsured children with high expenses relative to their incomes may receive free care or care

provided at a substantial discount from providers’

usual charges. Such care may be funded by public programs, such as State or local maternal and

child health agencies (funded in large part by Federal grants), private philanthropic agencies, or

health care providers. Thus, direct public and private funding of health care and uncompensated

care fills the gap between the care a child receives

and the care that is paid for by insurance or families themselves.

LIMITATIONS OF PRIVATE HEALTH INSURANCE

The fact that a child is covered by a private

health insurance policy does not necessarily imply that the insurance provides adequate coverage, especially for catastrophic expenses. The extent to which a child’s family is exposed to outof-pocket expenses for health care depends on five

components of the insurance plan:

1.

2.

3.

4.

5.

—

limits on covered services-limits on the type

or number of insured services, such as preventive visits, home care, or maximum number of hospital days;

first dollar deductible—the amount (which

may vary by type of benefit) that the beneficiary must pay each year before he or she

is eligible for coverage;

coinsurance rate—the percentage of the cost

of covered services for which the beneficiary is responsible;

catastrophic stop-loss on out-of-pocket expenses—typically an annual upper limit on

the beneficiary’s out-of-pocket payments for

insured services; and

overall plan maximums—limits on the total

amount the insurer will pay out on the policy, calculated either as annual, per episode,

or lifetime limits:

Exposure to catastrophic health care expenses depends largely on features four and five: the catastrophic stop-loss coverage and overall plan

maximum.

The most recent population-based survey of insurance coverage, the 1977 National Medical Care

Expenditure Survey, found that about 50 million

children under 18 years of age had private health

insurance. About 41 million (84 percent) of the

children with private insurance had major medical coverage rather than basic benefit plans. *O Less

than one-quarter (23 percent) of the children with

major medical coverage in 1977 had overall lifetime plan maximums that exceeded $250,000

(165).

In the decade since 1977, private health insurance has undergone major changes in all of the

components listed above. Since there has been no

population-based survey of insurance coverage,

however, the best recent evidence available on

private insurance coverage is from surveys of

employer-based private-sector group health plans.

‘OMajor medical coverage provides for an array of services and

usually includes an annual deductible, coinsurance requirements,

and maximum benefit limits. By comparison, basic benefit plans

usually provide first-dollar coverage but cover only a very narrow

set of services (e. g., hospital, surgtcal ).
60 • Healthy Children: Investing in the Future —

These surveys indicate that as of 1984, over threefourths of all employer-based private-sector plans

(and employees) were subject to some kind of

overall plan maximum; more than half of all employees had policies with lifetime maximum limits

of $500,000 or less (105,185,271,718,768).11 Although data on new group health insurance policies written by insurance companies in 1984 show

a dramatic trend toward higher overall lifetime

maximum limits (263), this trend will change the

averages very gradually.

The situation is somewhat better with respect

to catastrophic stop-loss coverage. In 1984, more

than three-fourths of employer-sponsored group

plans and employees had an annual catastrophic

limit on out-of-pocket expenses. Catastrophic

limits function only up to the maximum benefit

limits of the policies. Furthermore, since catastrophic limits refer only to benefits covered under the policy, coverage of catastrophic expenses

depends in part on the benefit limitations.

‘ I FOX and Yoshpe reported in 1986 that 67 percent of plans had

maximums and that less than 20 percent of plans had lifetime maximums under $500,000 ( 185). They surveyed a small number (60)

ot employers, however, and their sample may have been biased because it was drawn from a data source listing firms with net asset

values above a specific threshold, suggesting that even the smaller

tirms in the sample are disproportionately wealthy (185).

Benefit limitations can put a family at risk for

expenses even when catastrophic stop-loss coverage exists and can also discourage families from

seeking care in settings that are not covered under their insurance policies. In 1984, for example, almost one-half of employees in medium and

large business establishments were without any

home health care benefits (718). Although home

health benefits have been introduced increasingly

in the recent past—between 1980 and 1982, for

example, 11 percent of employer-based plans in

a survey of large firms reported adding such benefits (105)—it appears that many children would

not be eligible for home health benefits under their

current plans.

Little is known about the extent to which private insurance covers preventive health services,

such as health supervision visits or immunizations, for children. Experts agree that coverage

of preventive services is infrequently offered. Even

when such coverage is included in the benefit

package, however, the nearly universal existence

of first-dollar deductible requirements 12 limits the

effective coverage for these services.

ljAbout 90 ~rcent of a]] employer-based private health plans have

deductibles of $100 or more (768).

MEDICAID: FEATURES THAT POSE BARRIERS TO ACCESS

Medicaid is a federally aided, State-administered

program that provides medical assistance to an

estimated 23 million low-income people (106).

Operating within Federal guidelines, each State

designs and administers its own Medicaid program. Thus, Medicaid eligibility requirements,

services offered, and methods and levels of payment to providers vary widely among the States.

The adequacy of Medicaid in ensuring access to

health care for poor children and other eligible

people depends on these State-specific features.

At least 50 percent of each State’s Medicaid expenditures are paid by the Federal Government

using State-specific matching formulas (106).

Overall, the Federal contribution in fiscal year

1987 will be about 54 percent of the total national

Medicaid expenditure of $48.2 billion (465).

For children who are eligible for Medicaid,

some federally mandated components of the program facilitate access to health care. States are required to include as benefits to their eligible populations a range of services including nursing

home and home care, as well as hospital, physician, and laboratory and X-ray services. Furthermore, Medicaid is unique in its commitment to

preventive health care for children through the

Early and Periodic Screening, Diagnosis, and

Treatment (EPSDT) program. EPSDT is a program that combines informing, outreach, health

screening, followup care for detected conditions,

and case management. Each State is required to

offer EPSDT services to all Medicaid-eligible children and youth under 21. Medicaid children pay

no coinsurance for services received and, except
Chapter 3—Children’s Access to Health Care ● 6 1

in States with recently initiated waiver programs,

are free to choose their provider (subject, of

course, to the willingness of the provider to serve

them).

Despite the features of Medicaid that encourage

access, the access that poor children actually have

to health care services is limited by powerful barriers imposed through both Federal requirements

and State decisions, These barriers work through

four features of Medicaid:

1. eligibility requirements,

2. covered services and limitations,

3. policies governing payment to health care

providers, and

4. administrative practices.

The barriers in each of these areas are discussed

in turn below.

Eligibility Requirements

Eligibility for Medicaid is mandated by Federal

statute for some groups of people and is at the

option of the State for others. In general, Congress has been expanding Medicaid eligibility for

children since 1984. Today, therefore, all children

up to 31⁄2 years old whose family incomes fall

within the State limits for Aid to Families With

Dependent Children (AFDC)-–even though they

may not be eligible for AFDC because of their

family structure or parent’s employment status—

are entitled to Medicaid. By July 1988, as mandated by the Omnibus Reconciliation Act of 1987

(OBRA-87) (Public Law 100-203), Medicaid eligibility will have been extended to all children

through age 6 whose family incomes and resources

fall within AFDC limits.

Eligibility for Medicaid among young children

varies a great deal among the States because need

and payment standards for the AFDC program

are determined by individual States. In 1985, the

State AFDC eligibility levels for a family of three

ranged from 16 to 97 percent of the Federal poverty level, with a median of 45 percent (104).

Thus, although Medicaid eligibility for very young

children no longer depends on categorical criteria

such as disability or an absent parent, the income

and resource criteria underlying eligibility are still

varied, and, in many States, stringent. In 1986,

less than half of all children under 13 years of age

living in poverty were covered by Medicaid.13

Older children and children in families with incomes above AFDC eligibility levels are eligible

for Medicaid only if they either fall into a category mandated by Federal law or meet criteria for

coverage under an optional State-specific program. Under Federal law, children under 21 are

“categorically” eligible for Medicaid if they are

eligible for AFDC, are in foster care under Title

IV-E of the Social Security Act, or are blind or

disabled and eligible for Supplemental Security

Income. States have the option to offer Medicaid to children of families that are eligible for

AFDC but are not receiving it; in 1986, 26 States

exercised this option (674). States also have the

option to offer Medicaid to “medically needy”

children who would be categorically eligible for

Medicaid but whose income and resources lie

above the AFDC need standards. Each State has

a right to designate its own medically needy income and resource standards, but a State’s medically needy standards cannot exceed 133 percent

of the State’s AFDC income and resource standards. Thus, even in States that offer medically

needy programs—35 States in 1986 (674)—

Medicaid eligibility under these programs varies

with AFDC standards.

OBRA-87, passed in December 1987, gave States

the authority to expand Medicaid eligibility, beginning in July 1988, to all children through 8

years of age whose family incomes are below the

Federal poverty level and to infants whose family incomes are less than 185 percent of the Federal poverty level. 14 Individual States can choose

any income standard they want provided it is below the poverty line. Furthermore, individual

States need not extend Medicaid coverage all the

way through 8 years of age, If a State chooses to

cover pregnant women, however, it must cover

children at least up to the age of 2, and vice versa.

For poor children’s access to health care, the new

authority granted to the States by OBRA-87 is a

“According to the 1986 Current Population Survey, 4Q percent

of all children under 13 years of age in poverty were covered b}’

Medicaid, Medicare, or the Civilian Health and Medical Program

of the Uniformed Services (632 ~.

IJT’he 1987 Federal povertv Ieve] is $11,203 for a family of four

.

(382),
62 ● Healthy Children: Investing in the Future

major breakthrough. The availability of this optional coverage, however, will probably increase

the variation among States in Medicaid coverage

for children.

Covered Services and Limitations

States are required by Federal law to offer inpatient and outpatient hospital services, physician

services, EPSDT for children under 21, family

planning services and supplies, and a wide range

of other services15 to “categorically needy” Medicaid recipients; and they may choose to provide

preventive services and any of a number of other

optional services. *b At the same time, however,

States can and do establish limitations on the frequency and number of services.

States may also construct special programs that

target a specific and more limited package of services to a particular group of “medically needy”

persons. State medically needy programs are required by Federal law to provide ambulatory services to children under age 18 and prenatal and delivery services to pregnant women (184). Virtually

all States with programs covering medically needy

children have provided the same range of benefits available to children who are categorically

needy (184).

Since 1981, States have had the option of applying for waivers to provide a wide range of

community-based services necessary to keep people who would otherwise be institutionalized in

their homes. Some States have used these waivers

to provide services to chronically ill children who

would be in institutions (664).

Although the list of Medicaid-covered services

appears to be comprehensive, particularly if a

State offers many of the optional services, individual States have imposed limits on the availability of covered services through a variety of

“Other required services include laboratory and X-ray procedures,

skilled nursing facilities for persons over 21, home health care services

for those entitled to skilled nursing care, rural health clinic services, and nurse midwife services.

‘Optional services include clinic services; drugs; intermediate care

facilities; eyeglasses; skilled nursing facilities for those under 21; rehabilitative services; prosthetic devices; private duty nursing; inpatient psychiatric care for children or the elderly; and physical,

occupational, and speech therapies.

regulations governing the frequency and settings

of use.17 These limitations have been imposed for

the purpose of controlling Medicaid outlays. To

the extent that they reduce unnecessary use of

services, limitations on the frequency and settings

of use of services do not constitute barriers to access. As discussed below, however, the limitations

are often rigidly designed and enforced, and thus

are likely to pose problems for some children.

States have used a variety of mechanisms to

control the use of hospitals by Medicaid recipients. Two particularly important ones are limits

on the length of hospital stay or total number of

days of care covered annually. In 1986, 11 States

limited the number of days of hospital care for

which they would pay (674). For some children,

such as premature babies needing neonatal intensive care or chronically ill technology-dependent

children requiring 24-hour ventilator assistance,

these limitations on days of care are extremely restrictive (664). An analysis of the effects of inpatient controls on hospitalization rates for Medicaid children in 1980 did not find significant

effects for any specific individual controls (413);

that study, however, did not take account of the

fact that hospital use may be restricted through

a combination of control strategies.

Some States restrict visits to physicians by Medicaid recipients. In 1986, 12 States imposed some

ceiling on the annual number of ambulatory care

visits allowed to Medicaid recipients, ranging

from 2 to 36 ambulatory visits per year (674).

State limitations on ambulatory visits do not apply to visits under Medicaid’s EPSDT program.

Thus, for a child who has been screened under

EPSDT and found to be in need of treatment, the

limitations do not apply.

Finally, many States limit the use of services

by denying coverage of certain procedures. At

present, for example, most States do not reimburse for tocodynamometry —the use of an ambulatory monitoring device to detect premature

onset of labor in pregnant women. (See app. F.)

Refusals to cover specific procedures are not nec1 TThe availability of Medicaid-covered services has also been curtailed by restrictions on the methods and level of payment of

providers. Medicaid payment policies are discussed in a subsequent

section of this chapter.
Chapter 3—Children’s Access to Health Care ● 6 3

essarily indicators of poor access to needed services. To the extent that evidence about the effectiveness of a service is unfavorable or unavailable,

a State may have good reason to deny coverage

for that service, There have been no studies of

differences between Medicaid children and nonMedicaid children in rates of use of procedures

for which there is a consensus among medical experts regarding the procedure’s usefulness.

Policies Governing Payment

to Providers

Throughout the history of Medicaid, States

have attempted to control expenditures by controlling the methods and rates of payment for

services delivered to Medicaid patients. States

have always had wide latitude in determining the

method and levels of payment for physicians’

services, and in the early and mid-1970s, a number of States, including most States with large

Medicaid populations, began to control payments

to physicians (278). The trend toward greater control of physician payment has intensified since

1981 (278). Hospital inpatient care, on the other

hand, became a serious target for payment control only with the passage of the Omnibus Reconciliation Act of 1981 (OBRA-81) (Public Law 97-

3.5). Before then, most States followed Medicare’s

retrospective cost-based reimbursement system,

largel y because of administrative barriers to the

development of an alternative payment method

(278). OBRA-81 broadened States’ latitude to

deviate from Medicare’s principles of reimbursement for hospital care, and States have since taken

new initiatives to control payment for inpatient

services. Recent State initiatives to control hospital inpatient payment and physician payment

and the implications of these initiatives for children’s access to care are described in greater detail below.

Physician Payment Controls

Physician fees have always been subject to limitations under Medicaid (278). The Federal Government, by never imposing a specific method of

payment for physicians, has allowed States to experiment with alternative approaches to limiting

expenditures for physicians’ services. Although

most States began with a system based on charge

screens similar to Medicare’s “customary, prevailing, and reasonable” system, by 1986, 35 States

had adopted fee schedules for physicians (674).

Several of the other States have stopped regularly

updating their charge screens, and so their fees

have become tighter over time.

In general, Medicaid fees for physicians lie well

below those paid by Medicare, which are in turn

lower than those paid by the private sector. In

1979, for example, 30 States paid physicians Medicaid fees that were only 90 percent (or less) of

Medicare fees, and only 3 States paid fees higher

than Medicare fees (277). Since 1979, the level of

Medicaid fees relative to private fees has deteriorated. Between 1982 and 1984, for example, the

physicians’ services component of the Consumer

Price Index increased 13.2 percent, while the median Medicaid fee for a brief office examination

remained virtually unchanged (278). IN

What do these restrictive payment levels mean

for Medicaid recipients’ access to medical care?

Theoretically, the Medicaid fee level should influence physicians’ willingness to treat Medicaid

patients; the lower the fee, the less willing physicians would be to serve Medicaid patients. An

economic model of physicians’ practices predicts

that if Medicaid patients cannot obtain all the

services they would like to from physicians’ practices at existing fee levels, then decreasing the

Medicaid fee relative to the private fee will reduce

the supply of services to Medicaid enrollees (266).

The same model also predicts that, all other things

being equal, an increase in private patients’ demand for physicians’ services or in physicians’

practice costs will reduce the amount of care that

physicians are willing to provide to Medicaid patients; an increase in the supply of physicians, on

the other hand, will increase the amount of care

that physicians will provide to Medicaid patients.

Empirical studies of physician participation in

Medicaid have supported this theory (266,431,

489). In one study of the relationship between low

Medicaid payment rates for visits relative to pri-

‘S%me States experienced actual reductions in Medicaid payment

levels, while others had increases. For example, in Arkansas, the

fee for a brief oftice exam Increased by 14.2 percent, from $9.20

to $12, while in h’Mississippi, it decreased by 31.7 percent, from $Q

to $4.20 (673).
64 ● Healthy Children: Investing in the Future

vate fees and the number of physician visits by

Medicaid children, investigators found that overall use rates were not affected, but the site of care

was (384). With more stringent Medicaid fees,

Medicaid children received more of their care in

hospital outpatient departments and clinics and

less in physicians’ offices.

Are the current Medicaid fees paid to physicians

so low as to seriously jeopardize the availability

of physicians willing to serve Medicaid children?

We can say very little about the question of physician participation in Medicaid and its relationship to access. If acceptable access means the ability of a Medicaid patient to find a qualified doctor

within reasonable time and distance (not necessarily a doctor of the patient’s own choosing), then

participation in Medicaid by all physicians is not

necessary. Yet it is difficult to measure the extent

to which Medicaid children are able to find qualified participating doctors willing to serve them.

Available evidence on physician participation

in Medicaid, summarized in appendix E, has serious limitations. As discussed in appendix E, it is

difficult to measure the extent of physician participation in Medicaid. Most of what is known

is based on national surveys of physicians (5,430,

431,489,593)—and these data probably overestimate the rate of physician participation.

Despite their limitations, however, data from

surveys of physicians do permit reasonably valid

observations about trends in participation over

time and across specialties and geographic region.

It appears from these data that there is wide variation in pediatrician participation across States

and geographic regions.

It also appears that pediatricians’ participation

in Medicaid has not deteriorated in the recent past

despite the relative decline in Medicaid fees paid

to physicians and increases in practice costs. In

fact, from 1978 to 1984, pediatrician participation in Medicaid actually increased slightly.

Whether trends in participation have been continuing in the same direction in the past few years,

however, is not known. The question of how the

opposing forces of increased physician supply and

increased practice costs are playing out in terms

of physicians’ willingness to serve Medicaid patients today cannot be answered at present. Because of the high interstate and interregional variation in physician participation in Medicaid,

however, it is very likely that some populations

of Medicaid children cannot receive care from private pediatric services, while others are able to

obtain qualified services.

Hospital Inpatient Payment Controls

As of June 1985, 37 States had abandoned retrospective cost-based reimbursement for inpatient

services (366) and replaced it with some type of

prospective hospital payment system, whereby

rates of payment are specified in advance and hospitals receive the specified amount regardless of

what is done for the patient. Thirteen of the thirtyseven States had adopted prospective per-case

payment, paying a fixed amount for each Medicaid admission. Twenty-one States had adopted

prospective per-diem payment, paying a fixed

amount for each day a patient is hospitalized. The

three other States used some sort of prospective

budget review or negotiation approach to setting

rates.

There is little evidence on how these alternative payment methods affect the use of hospital

care by children. One study of AFDC children’s

hospital use in 1980 found that the operation of

a hospital payment scheme different from the

Medicare cost-reimbursement principles had no

statistically significant impact on these children’s

hospital use (413).

The impact of hospital inpatient payment controls on access to care for Medicaid beneficiaries

depends not only on the method of payment, but

also, and perhaps largely, on the payment level.

If payment levels are so low that they do not cover

the costs of treating Medicaid patients, then hospitals have incentives not to offer services for these

patients. On the other hand, even under a percase payment system, if the Medicaid payment

level is high enough on the average to result in

an operating surplus, then hospitals would be inclined to serve Medicaid patients. Some observers

have argued that the use of prospective per-case

payment by Medicaid agencies has created serious problems for hospitals with neonatal inten-
Chapter 3—Children Access to Health Care ● 6 5

sive care units because the methods used to adjust

for the seriousness of these cases are insufficiently

sensitive. 19

Administrative Procedures

The fourth major area in which Medicaid falls

short of its promise is in the use of administrative procedures that delay or deter the receipt of

health services by eligible children.

In a 13-State survey of pediatricians conducted

in 1983, 46 percent of respondents considered the

complexity of Medicaid program regulations to

be “very important” problems of Medicaid; 52

percent considered the unpredictability of Medicaid payments to be very important (18). To the

‘“See OTA s 1987 case study on neonatal intensive care for low

birthweight Intants (665 I for a discussitln of this issue.

ALTERNATIVES TO PRIVATE AND

FOR CHILDREN

A number of Federal programs directly fund or

provide health care for children. Among them are

the following programs which are discussed briefly below:

● the Maternal and Child Health services

(MCH) block grant,

● the Preventive Health and Health Services

(PHHS) block grant,

● Head Start,

● community health centers (CHCs),

• migrant health centers (MHCs), and

Ž the Indian Health Service (IHS).

Maternal and Child Health Services

Block Grant

Authorized under Title V of the Social Security Act, the MCH block grant provides health

services to mothers and children. The block grant

was created as part of OBRA-81 (Public Law 97-

35) and consolidated Federal funding for several

categorical programs: maternal and child health

extent that children’s access is affected by participation rates, these problems have serious implications for access.

Receipt of early or timely care depends on families’ being informed of and understanding the

meaning of their eligibility for Medicaid. The consequences of expanding eligibility for young children under OBRA-87 may depend in a fundamental way on these families’ being informed of their

eligibility and encouraged to make use of it. There

are anecdotal examples of States failing to make

minimal efforts to inform providers or patients

of their likely eligibility for Medicaid. For example, although the State of Georgia has three Medicaid waivers to provide for eligibility for technology-dependent children living at home, neither

families nor hospital discharge planners have been

informed of the waivers. Indeed, even among the

Medicaid agency staff, there is much confusion

and misinformation about whether additional

children may be covered (664).

PUBLIC HEALTH INSURANCE

services, crippled children’s services, Supplemental Security Income (SSI) services for disabled children, prevention of lead-based paint poisoning,

testing for genetic diseases, prevention of sudden

infant death syndrome, hemophilia treatment

centers, and prevention of adolescent pregnancy.

The Federal agency that administers MCH

block grants is the Health Resources and Services

Administration of the Public Health Service. It

is up to each State, however, to decide what services MCH block grant funds are used for. Instead

of operating as an insurance program, Federal

block grants are awarded to the States, which in

turn provide grants directly to public and private

providers of maternal and child health care or

crippled children’s services (209,541).

Federal and State funds for maternal and child

health services have decreased markedly throughout the 1980s (see ch. 2). Expenditures for specific services (e. g., prenatal care, well-child care)

under the Title V MCH block grant program are
66 • Healthy Children: Investing in the Future

nearly impossible to identify, largely because the

Federal Government does not require the collection or reporting of data on such expenditures.

This problem is exacerbated by the fact that there

are no requirements regarding minimum services

and eligibility. As a consequence, very little is

known about who receives what types of services under the MCH block grant (209).

Preventive Health and Health Services

Block Grant

Like the MCH block grant, the PHHS block

grant was created as part of OBRA-81. The PHHS

block grant consolidated funding for eight categorical grants: health education and risk reduction, comprehensive public health services, emergency medical services, home health services,

rodent control, community- and school-based

fluoridation, detection and prevention of hypertension, and rape crisis and prevention services.

The emphasis of the PHHS block grant is different from that of the MCH block grant. No PHHS

funds go toward handicapped children’s services,

very little PHHS money is spent on maternal and

child health, and a much greater percentage of

PHHS money is spent on nonpersonal health services. Of $68.2 million for PHHS spent by 46 State

health agencies in 1984, $41,7 million (61 percent)

was for personal health services, $7.3 million (10.7

percent) was for environmental health, and $11.8

million (17 percent) was for health resources (511).

The Federal agency that administers the PHHS

block grant is the Centers for Disease Control,

but each State retains its own decisionmaking authority over how the funds are distributed for the

various services (511).

Head Start

Project Head Start, begun in 1965, provides

educational, social, nutritional, and medical services to low-income preschool children. The program is overseen by the Administration for Children, Youth, and Families within the Office of

Human Development Services of the U.S. Department of Health and Human Services, but it is

administered at the local level by Head Start agencies. A total of 1,305 Head Start programs in the

United States serve 452,000 children (676). The

Federal budget for Head Start was over $1 billion in 1986 (676).

Medical services provided in the Head Start

program include a complete examination (including vision and hearing tests), identification of

handicapping conditions, immunizations, a dental exam, mental health services, and nutritional

services. Followup treatment is provided for any

health problems that are identified. Fifty percent

of the children in Head Start are enrolled in EPSDT

and get their medical care paid for through that

program (676).

Community Health Centers

CHCs are part of the primary care program administered by the Bureau of Health Care Delivery and Assistance within the Health Resources

and Services Administration of the U.S. Department of Health and Human Services. The goal of

CHCs is to provide primary health care to medically underserved areas. As of 1984, there were

600 CHCs with 700 satellite clinics, serving over

6 million people (60 percent of whom were below the Federal poverty level, and 25 percent with

incomes between 100 and 200 percent of the Federal poverty level). One observer reports that

nearly half of all CHC users are completely uninsured (543).

A wide range of services is available through

CHCs (224). Certain services, called “primary

health services, ” are provided by all CHCs. These

include, for example, preventive health services

(e.g., prenatal care, family planning), diagnostic

care, emergency care, and transportation. Other

services, called “supplemental health services, ” are

provided at the grantee’s option. Such services include hospital care, health education, and dental

and vision care, among others.

Services are provided on a sliding fee pay scale

based on income and family size, with families

living below the Federal poverty level eligible for

free care, and CHCs are required to seek thirdparty reimbursement (Medicaid, Medicare, private insurance) if available. The CHC program

is a grant program, authorized under Section 330

of the Public Health Service Act, with a 1987 Federal budget of $400 million (696). Federal funding in real dollars for CHCs has declined markedly
Chapter 3—Children Access to Health Care ● 6 7

since 1981 (see ch. 2). CHCs also receive some

funding from nonprofit groups (224).

Migrant Health Centers

Like CHCs, MHCs are part of the primary care

program administered by the Bureau of Health

Care Delivery and Assistance. MHCs provide primary health care to migrant and seasonal farm

workers and their families. There are 122 MHCs

operating approximately 378 clinics that serve

over 450,000 people. In 1987, the Federal appropriation for the MHC program was $45.4 million. Nearly two-thirds of the MHCs also receive

funds from the CHC program (695).

Indian Health Service

IHS, a part of the Public Health Service, provides health care services to American Indian and

Alaska Native children at no cost to the individCONCLUSIONS

This chapter has examined the evidence on the

relationship between family income and health insurance status and the availability and use of

health care services by American children. Low

income and lack of adequate health insurance go

together, so that children of poor and near-poor

families use fewer health care services than do children of middle-class families. Nationally, between

14 and 19 percent of American children have no

health insurance whatsoever. About 42 percent

of all uninsured children have family incomes below the poverty line. Low-income children without insurance coverage use substantially fewer

health care services than do either privately insured children or Medicaid children, although

Medicaid does not appear to eliminate all differences in the use of services between poor and nonpoor children. The sicker the child, the stronger

the effect of income on the frequency of use of

health services.

The use of medical care by children is exquisitely sensitive to the cost of obtaining that care,

particularly in relation to the parents’ ability to

pay. Children of poor families that have to pay

ual patient or patient’s family. The services provided by IHS include inpatient and ambulatory

medical services, dental care, mental health and

alcoholism services, preventive health (immunizations and environmental services such as sanitation and water safety), health education, and

Indian health manpower development programs

(662). IHS provides these services through its network of IHS-owned hospitals, health centers, and

clinics, or indirectly, by purchasing services that

are not available from IHS facilities through contracts with private providers (662).

In fiscal year 1987, the Federal IHS was appropriated $858 million, including $737 million for

clinical services and $64 million for preventive

health (449). According to the 1980 U.S. census,

children represent 32 percent of the Indian population, That means that about 300,000 Indian children (of the 960,000 eligible Indians in 1985) receive health care from IHS (662).

for care see physicians less often than those who

have free care, and it appears that parents are not

generally able to discriminate between visits that

are highly effective in treating the child’s health

problem and those that are not: both kinds of

visits decline equally. The same phenomenon exists for children of nonpoor families, but the size

of the decline is much smaller.

The Medicaid program offers some relief from

the double burdens of poverty and illness for the

very poorest segment of children. But it is clear

that this care is delivered in settings that differ

markedly from those available to middle-class

Americans. Medicaid children receive care from

hospitals and clinics, while nonpoor children

receive care from private physician practices.

Whether the quality of such care is higher in one

setting than another is unknown, but it can be

said that Medicaid children are either not encouraged or not enabled to seek out care as often

as nonpoor children.

If the goal of the Medicaid program was to give

poor children access to the same kind of medical

care available to nonpoor children, it has certainly
68 ● Healthy Children: Investing in the Future

not been met. Impediments to serving Medicaid

children exist in the form of limitations on covered services, administrative barriers, and, especially, stringent physician payment policies. Although the available evidence suggests that access

to pediatricians has not declined substantially in

the past 5 years in the United States as a whole,

that access has not been high during the entire

period, and continued stringency in payment rates

can only put more pressure on access in the future.

Other federally supported programs that provide direct care to poor children, particularly to

the uninsured, have been subject to funding cutbacks throughout the 1980s when spending is adjusted for inflation. For example, between 1978

and 1986, Federal appropriations for maternal and

child health services declined (in 1978 dollars) by

43 percent; for CHCs by 11 percent; and for

MHCs by 33 percent. When the increase in the

population without health insurance is considered,

the implications for children’s access to care are

not encouraging.
Part II

Prevention of Childhood Illness:

Selected Topics
Chapter 4

Prenatal Care
CONTENTS

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73

Recommended Components of Prenatal Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73

Use of Prenatal Care.... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75

Effectiveness of Prenatal Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75

Problems in Interpreting the Evidence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 76

Studies of the Effectiveness of Prenatal Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 77

Conclusions About the Effectiveness of Prenatal Care . . . . . . . . . . . . . . . . . . . . . . . 80

Cost-Effectiveness of Expanding Medicaid to All Pregnant Women in Poverty . . . 80

Impact of Expanded Medicaid Coverage on the Use of Prenatal Care . . . . . . . . . 82

Incremental Costs of Early prenatal Care. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 83

Savings From the Prevention of Low Birthweight Births . . . . . . . . . . ..+...... . . 83

Required Level of Effectiveness of Prenatal Care . . . . . . . . . . . . . . . . . . . . . . . . . . . 85

Access to Prenatal Care: The Role of Third-Party Payment and Alternative

Funding Sources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . + . . . . . . . . . . . . . . . . 86

Medicaid . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 87

Private Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 88

Alternatives to Public and Private Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 89

Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 90

Figure

Figure No. Page

4-1. Assumptions in OTA’s Base Case Analysis About Changes in the Use of

First-Trimester Prenatal Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 82

Tables

Table No. Page

4-1. Summary of 17 Selected Studies of the Effects of Programs

Offering Augmented Prenatal Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79

4-2. Net Incremental Health Care Costs of a Low Birthweight Birth . . . . . . . . . . . . . . . 85
Chapter 4

Prenatal Care

INTRODUCTION

Prenatal care is a type of health care aimed at

improving and maintaining maternal and child

health. ’ Such care is provided at the earliest possible point—during pregnancy—and thus has the

potential for significantly shaping the health of

a human being from the very beginning.

‘Prenatal care consists of health services delivered from conception to labor. Related services include intrapartum care (received

during labor and delivery) and postpartum care (rendered immediately following delivery to the sixth week after birth). Prenatal care

and intrapartum care combined are referred to as maternity care.

Definitions of the period for perinatal care vary, but in general, this

period overlaps the pre- and post-delivery date by several weeks.

The chapter summarizes a wide variety of information on prenatal care. First, it reviews the

recommendations of the United States’ and other

countries’ professional groups regarding the content of prenatal care. Then, it reports information on the timing and frequency of visits among

subgroups of the U.S. population. Previous

studies examining the effectiveness and costeffectiveness of prenatal care are critiqued and

findings summarized. This chapter also presents

the findings of OTA’s cost-effectiveness analysis

of expanding Medicaid to all pregnant women in

poverty. The concluding sections of the chapter

analyze the role of third-party payment in

facilitating access to prenatal care and discuss the

implications of OTA’s analysis for public policy.

RECOMMENDED COMPONENTS OF PRENATAL CARE

Prenatal care encompasses a wide range of

preventive, diagnostic, and therapeutic services

delivered throughout the course of pregnancy

with the goal of both a healthy baby and a healthy

Photo credit. March of Dimes Birth Defects Foundation

Although early and comprehensive prenatal care is

clearly effective, the specific components that make

a difference are not fully understood.

mother. The actual care that pregnant women receive varies widely, depending on the number of

visits the woman has, as well as on the specific

interventions that are applied. Preventive interventions include screening for potentially harmful conditions in the mother and fetus, education

and counseling, and sometimes nutritional supplements, Diagnostic and therapeutic interventions

represent responses to and followup of problems

identified either through symptoms or screening.

Various professional groups in the United States

and other countries have provided guidelines for

the content of prenatal care, particularly for the

preventive elements of such care. 2 Available

guidelines cover the prenatal visit schedule, specific assessment and screening procedures, edu2

For a discussion of recommendations by professional groups and

experts in the United States, Canada, and Great Britain, see the background paper prepared for OTA by Lorraine Klerman and Helen

Burst, entitled “Evidence of the Effectiveness of Recommended Antepartum Care Components” (341 1.

73
74 ● Healthy Children: Investing in the Future

cation and counseling activities, and nutritional

supplementation. The guidelines issued jointly by

the American College of Obstetricians and Gynecologists (ACOG) and the American Academy of

Pediatrics (AAP) (22,25) call for prenatal care

visits to begin as early in the first trimester of pregnancy as possible and to continue every 4 weeks

until the 28th week, every 2 to 3 weeks thereafter

until the 36th week, and weekly thereafter. This

schedule translates into 13 to 15 prenatal visits

over the course of a normal pregnancy of between

37 and 40 weeks gestation.

The visit schedule recommended by the Canadian Task Force on the Periodic Health Examination is the same schedule as that of the Americans (89,90). The Royal College of Obstetricians

and Gynecologists (RCOG) in Great Britain, on

the other hand, recommends substantially fewer

visits for women with normal pregnancies, The

RCOG schedule calls for a total of seven to nine

prenatal visits at various points in pregnancy and

beginning at 12 weeks gestation (552). This schedule is based on the concept of “shared antenatal

care, “ in which responsibility for providing services is shared among obstetricians, general practitioners, and midwives. Only three of the nine

recommended visits in the RCOG schedule involve an obstetrician. The rest are handled by a

combination of the general practitioner and

midwives.

For some specific services, there is widespread

agreement among the American, Canadian, and

British professional societies. The need for determining blood group and screening for antibodies

in Rh-negative women, for example, is something

that all groups recognize. Screening for syphilis

and gonorrhea at the initial visit is another thing

they all recommend (341). For other tests, however, there is substantial disagreement about policy among the countries’ professional societies.

Thus, for example, the use of ultrasound is not

recommended as a routine screening examination

in pregnancy by the American or Canadian

groups, but is recommended by the British at 16

to 18 weeks gestation. The Canadian Task Force

on the Periodic Health Examination is the only

group that currently recommends routine testing

of all pregnant women for chlamydial infections.

The differences among the various professional

groups’ recommendations reflect in part a lack of

definitive evidence regarding the incremental contributions of additional prenatal interventions or

visits at particular points in pregnancy. They also

reflect the philosophies of the different health systems in which the professional groups practice.

In addition, as advances in medical technologies

alter both the effectiveness and cost of services,

professional standard-setting groups may react at

different speeds to new evidence. One new technique for which evidence is only now accumulating, for example, is called “ambulatory tocodynamometry.” This technique allows noninvasive

ambulatory monitoring of uterine contractions in

women at risk for premature labor and may enhance the effectiveness of the available therapies

to reduce the incidence of premature birth (see

app. F). So far, no professional society has issued

guidelines regarding its use.

Professionals disagree not only about the

amount and content of prenatal care visits for normal pregnancies, but also about which pregnancies are high-risk and how these should be handled. Women with medical histories or conditions

that suggest elevated risk obviously justify closer

monitoring during pregnancy than other women

do, but there are no widely agreed upon guidelines for the appropriate scope of services under

each circumstance. Neither are there generally accepted standards for women who are at elevated

risk of poor outcomes because of social or demographic risk factors (e. g., adolescents or poor

women).

The lack of generally accepted standards for the

content of prenatal care for high-risk women reflects the conflicting evidence about the importance of specific interventions. Later in this chapter, OTA reviews the evidence on the effectiveness

of prenatal care in improving birth outcomes, but

it is important to note that that evidence is limited

to assessments of the effect of earlier and more

frequent prenatal visits on birth outcomes or of

the effect of programs that offer packages of augmented prenatal care services to women in demographically defined high-risk groups. The precise content of the care that is offered is often

undocumented.
Chapter 4—Prenatal Care ● 7 5

USE OF PRENATAL

How closely do American

. . . .

CARE

women adhere to

U.S. professional groups’ recommendations for

the timing and frequency of prenatal care? In

1984, 20 percent of white babies and 39 percent

of black babies in the United States were born to

mothers who had not had their first visit for

prenatal care by the end of the first trimester of

pregnancy (712). The mothers of 5 percent of

white and 10 percent of black babies born in 1984

had not had a prenatal care visit before the 7th

month of pregnancy (712). From 1981 to 1984,

the percentage of women obtaining late or no

prenatal care in this country increased: for blacks,

the percentage increased from 9.1 percent in 1981

to 10 percent in 1984; for whites, the percentage

increased more modestly—from 4.3 percent in

1981 to 4.6 percent in 1984.

Most mothers of both races in the United States

fail to receive the 13 to 15 prenatal visits recommended by American professional groups.

Among mothers with full-term pregnancies, only

33 percent of whites and 23 percent of blacks had

13 or more prenatal visits in 1984 (712).

The timing of the first prenatal visit varies

widely among different U.S. population subgroups. Ingram and colleagues compared 10

groups of women defined by race, marital status,

maternal age, and educational attainment in 5

years between 1970 and 1983 (295). Unmarried

teenagers with less than a high school education

were the least likely to obtain early prenatal care,

while older married mothers with more than a

high school education were the most likely to obtain it. These findings held for both whites and

blacks. Thus, for example, in 1983, about 45 percent of unmarried teenagers who did not graduate from high school initiated prenatal care in the

first trimester of pregnancy; the comparable figure for older married mothers with more than a

high school education was 80 percent.

As expected, poverty status is also related to

American women’s use of prenatal care services.

In 1980, two-thirds of women with family incomes

below 150 percent of the U.S. poverty level initiated care in the first trimester, as compared to

over 80 percent of those with higher family incomes (598). Similarly, women with low incomes

were three to four times more likely to receive late

or no prenatal care than women with incomes

above 150 percent of the poverty level.

To summarize, the receipt of early and frequent

prenatal care by American women varies widely

depending on the demographic and economic

group to which a woman belongs. To the extent

that early and frequent prenatal care affects the

outcome of pregnancy, these variations contribute to the observed intergroup differences in rates

of low birthweight and infant mortality. Although

it appears that the majority of American women

actually make fewer visits for prenatal care than

is recommended by American physician groups,

the differentials by income, age, race, and education suggest that targeting effective prenatal care

services to the women in high-risk groups holds

promise for improving pregnancy outcomes.

EFFECTIVENESS OF PRENATAL CARE

This section summarizes the evidence on the effectiveness of prenatal care in altering two critical aspects of infant health: low birthweight and

neonatal mortality. Low birthweight (under 2,500

grams) is a good predictor of infant mortality (see

ch. 2) and is also associated with high rates of

chronic and disabling illness and costly medical

care, Neonatal mortality, independent of birthweight, is also a good indicator of the overall

health of newborns and maybe directly affected by

the nature of prenatal care that women receives

Because prenatal care includes not only preventive interventions such as screening and counsel3

Low birthweight and neonatal mortality are both strongly correlated with another outcome measure—premature birth (defined

as birth at 37 weeks gestation or earlier). This measure of outcome

is problematic, however, because current methods of dating gestational age are imprecise and are also improving over time.
76 . Healthy Children: Investing in the Future

ing but also treatment when needed, it is bound

to be effective in altering the health of some

mothers or infants. Treatment of gestational diabetes or hemolytic disorders, for example, is critical to healthy outcomes for both mother and

infant. Yet, if frequent routine screening for a particular condition does not offer any advantage in

terms of allowing more effective treatment or better management of labor and delivery than would

seeking care when symptoms develop, the value

of such screening is dubious. Thus, the real question of effectiveness is not whether prenatal care

makes any difference to child health, but exactly

which preventive measures—monitoring, screening, education and counseling, or nutritional

supplements—are effective and at what intervals

in the course of a normal pregnancy they are most

effectively applied.

This question can be addressed at various levels

of detail, ranging from examination of every possible preventive component of each prenatal care

visit to a general assessment of the effects of more

care v. less care, as measured by the number of

prenatal visits, early initiation of care, or receipt

of enriched services through special programs. Although an overall assessment of the effectiveness

of prenatal care would ideally build on evidence

regarding individual components, it is beyond the

scope of this assessment to examine the effectiveness of individual components.4 Instead, the large

body of evidence accumulated on the impact of

early, more frequent, or enriched prenatal services on low birthweight and neonatal mortality

will be the basis for this analysis,

Problems in Interpreting the Evidence

An ideal study of any prenatal care regimen

would be prospective, with randomized assignment of patients to experimental and control

4

The Public Health Service has established an expert panel on the

content of prenatal care, with the objective of examining the usefulness of specific components of prenatal care. The work of the

panel is currently in progress, For other information on the effectiveness of individual components of prenatal care, see the background paper prepared for OTA by Lorraine Klerman and Helen

Burst reviewing the evidence on effectiveness of chlamydia testing,

routine ultrasound screening, smoking cessation programs, and nutritional supplementation (552). The effectiveness of ambulatory

tocodynamometry, a new technique for detecting premature labor

in high-risk women, is discussed in app. F in this report.

groups. This ideal is rarely achieved in practice,

however, because it would be unethical to withhold early or frequent prenatal care from women

seeking it. Even in programs offering enriched

services, randomized assignment is rarely

achieved. In only one published study—a comparison of a program of home visits with standard prenatal care (469)—were subjects randomly

assigned to experimental and control groups. All

other studies of the impact of prenatal care on infants’ health depart to one degree or another from

the experimental ideal.

Not surprisingly, then, the validity of all studies

of the impact of prenatal care on infants’ health

is questionable to some degree. The critical threat

to validity is the problem of self-selection bias—

i.e., the likelihood that women who seek more

care, earlier care, or enriched services are inherently different in terms of their health risks from

women who do not.

Two kinds of self-selection bias exist in studies

of prenatal care. The most familiar form of selfselection bias follows the logic that women who

seek prenatal care early and often routinely behave in healthy ways, of which early receipt of

prenatal care is but one reflection. Women who

receive earlier and more prenatal care, for example, may also be less likely to smoke cigarettes

or abuse alcohol (218). These women are probably healthy on the whole and thus are likely to

be at lower than average risk of poor outcomes.

A study in which this kind of “favorable selection” operates would tend to overestimate the effectiveness of prenatal care.

The second form of self-selection operates to

bias the results of a study in the opposite direction. In this case, women who experience a problem with their pregnancy or have information that

leads them to expect problems (e.g., a poor pregnancy history) would tend to seek care early and

often. These women are likely to be at higher than

average risk of poor outcomes. A study in which

this kind of “adverse selection” occurs would tend

to underestimate the effectiveness of prenatal care.

As a consequence of self-selection bias, simple

comparisons between users and nonusers of prenatal care, or between more frequent and less frequent use, are unacceptable. Researchers have
Chapter 4—Prenatal Care . 77

used various methods to control for self-selection

bias. Some use multivariate techniques in which

variables thought to be associated with favorable

selection (e. g., income, education, smoking behavior) and adverse selection (e.g., preexisting

health problems, complications of pregnancy,

prior fetal or infant death) are entered into the

analysis as control variables along with measures

of prenatal care use. In studies of programs of enriched care, pregnancy outcomes of women who

are eligible for a program are often compared with

those of a group of similar but ineligible women. If

carefully selected, the comparison group can provide reasonable validity. Nevertheless, the question always remains whether the self-selection bias

has been adequately controlled in all such studies,

and lacking a gold standard by which such adjustments can be judged, one can never be completely confident that a study’s results are valid.

Thus, although there is a substantial body of

literature on the effectiveness of prenatal care, the

interpretation of this literature ultimately requires

judgments about its validity. Individuals who

would apply the strictest standards of validity

probably would not accept any of the evidence—

whether pro or con—as sufficient. Yet policy decisions regarding prenatal care need to be made

even in the face of imperfect information. Therefore, OTA has taken a somewhat more relaxed

position with regard to validity. The findings of

more than 55 studies of the effectiveness of prenatal care need not be ignored because they only

imperfectly control for self-selection biases.

Rather, each study can be assessed both for the

degree to which it has successfully controlled for

these biases and for the strength of its findings.

The results of such an assessment are summarized

below.

Studies of the Effectiveness of

Prenatal Care

Studies of prenatal care fall into two general

categories:

1. those based on birth and death records (i.e.,

vital records); and

2. those evaluating programs offering enriched

or augmented services.

Studies in the first category have the advantage

of large sample sizes, but these databases offer

limited information on prenatal care use and

mothers’ characteristics; typically, information on

prenatal care use is limited to number of visits or

trimester in which care began. Studies in the second category often use well-selected comparison

groups and sometimes have access to more extensive information on patterns of prenatal care use;

however, these evaluations typically compare care

that is generally available to women in the community with more comprehensive programs, and

it is difficult to generalize from these studies about

the value of more v. less prenatal care of the kind

generally available.

Studies Based on Vital Records

Numerous studies of births and deaths in hospitals, cities, counties, States, and the Nation as

a whole have found a positive relationship between the use of prenatal care and birth outcomes.

Of 21 multivariate studies of the effect of prenatal care on birthweight that controlled in some

way for maternal demographic or medical risks,

for example, 18 found evidence of a statistically

significant positive effect in at least some groups

of women. (See table G-1 in app. G for detailed

descriptions of these studies.) Similarly, of 15 controlled studies of the effects of prenatal care on

neonatal mortality, 11 found a statistically significant negative relationship between neonatal

mortality and the use of prenatal care. (See table

G-1 in app. G.)

Among studies finding that prenatal care had

a positive effect on birth outcomes, the size of the

effect varied widely because of differences in

measures of prenatal care and control variables

selected for the analysis. A 1981 study of births

in Baltimore, Maryland, that controlled for several demographic and medical risk factors found,

for example, that women who received adequate

prenatal cares were about 11⁄2 times more likely

to deliver normal weight babies than those who

did not (573). Another study of births in 1977 that

controlled only for mother’s race and education

found that mothers receiving no prenatal care

‘Adequate care was defined by an index of adequacy of care first

developed by Kessner (328) and modified by others.
78 • Healthy Children: Investing in the Future

were 21⁄2 times as likely to deliver a low birthweight baby (227a).

Five recent analyses of prenatal care using data

from vital records have applied an analytic technique known as instrumental variables to control for adverse selection bias. These studies uniformly find even stronger positive effects of

prenatal care on neonatal mortality and birthweight than are found with traditional multivariate techniques. (See table G-2 in app. G for a

summary of studies using instrumental variables. )

Because these studies generally do not adequately

control for favorable selection bias, however, they

can be expected to overestimate the effects of

prenatal care on birth outcomes.

Studies of the Effectiveness of Programs

Offering Augmented Prenatal Care

For the past 20 years, a number of Federal and

State-initiated programs have offered prenatal

care services that differ in scope and mix of services from those routinely available in the community. These programs typically offer a variety of

supplementary services to target groups of high

risk women, usually teenagers or poor women.

For example, Maternity and Infant Care projects,

the Improved Child Health Project, and Improved

Pregnancy Outcome projects were established by

the Children’s Bureau and through Title V of the

Social Security Act of 1935 to improve the delivery of care to the generally high-risk and underserved populations of poor women and adolescents (128,212,395), State initiatives with similar

goals, such as the Obstetrical Access Project in

California (615) and other local and hospitalspecific programs were also established. These

programs were developed to address unequal access to prenatal services or a perceived need for

more comprehensive care for high-risk women.

In addition to providing routine medical services

during pregnancy, these initiatives include a wide

variety of supplementary services such as out-

‘In general, the instrumental variables technique attempts to correct for adverse selection bias by replacing the observed value of

prenatal care with a predicted value derived from a regression of

prenatal care on explanatory variables that are uncorrelated with

the health status of the mother. Thus, the predicted prenatal care

variable is also assumed to be uncorrelated with health status. This

predicted prenatal care variable is then used in a second-stage regression to predict its effect on the outcome of pregnancy.

reach, 7 formal education and counseling, coordination of auxiliary support services, transportation to and from medical visits, and/or home

visitation.

OTA found 25 studies of the effectiveness of

programs offering augmented prenatal care services. (See table G-3 in app. G.) The target groups

for the majority of these programs are teenagers

or poor women. Most studies compare the outcomes of births to women enrolled in a particular enriched care program with the outcomes observed in a selected comparison group of women

receiving care elsewhere. Thus, these studies examine the incremental benefit of augmented care

over and above services received by the comparison group.

The studies of the effectiveness of augmented

prenatal care programs have found that publicly

funded comprehensive prenatal care programs,

such as Maternity and Infant Care projects, the

Improved Child Health Project, and Improved

Pregnancy Outcomes projects, increase the use of

prenatal care among certain groups of poor

women and adolescents. More pregnant women

get care early and often through these programs,

Studies of augmented prenatal care programs,

however, show a less consistent effect on birth

outcomes than was found in studies based on vital records data. Some significant findings were

observed for specific subgroups of the target populations, such as adolescents and women at high

risk for poor pregnancy outcomes. For example,

four of six studies of augmented services for pregnant adolescents found that such care reduced the

frequency of low birthweight and premature

births. For teenagers and women at high risk,

Maternity and Infant Care projects, the Improved

Child Health Project, and Improved Pregnancy

Outcomes projects may provide an appropriate

mix of routine and specialized care. Poor women

at average or low risk, however, may not receive

much incremental benefit from these comprehensive programs over and above the benefit of the

care they would routinely receive.

70utreach generally means two types of services that have different

goals: to increase access and/or to improve medical care compliance. For example, in some programs, outreach refers to efforts to

enroll pregnant women early in gestation. In other programs, outreach focuses on getting enrolled patients to keep their appointments

and to follow medical regimens or advice.
The relationship between early or more frequent prenatal care and birth outcomes appears

to be much more tenuous in this group of studies

than it was in the studies based on vital records,

Some of the studies of augmented care found improvements in the initiation of care among program participants but no effects of the program

on birth outcomes. OTA analyzed 17 studies of

programs for poor women or teenagers for which

information on either outreach services or time

of initiation of care was available for both an experimental and comparison group (see table 4-1).

Overall, only about one-half of these 17 studies

found that augmented prenatal care services had

significant impacts on birthweight or neonatal

mortality. In 7 of the 17 programs, the experimental group receiving augmented services initiated prenatal care earlier than the comparison

group; in 4 of the 7, augmented prenatal care was

found to have significant positive effects on birth

outcomes. Of the 17 programs offering augmented prenatal care services, 11 appeared to have

an outreach component designed to enroll women

into care early in their pregnancies. Information

on when care began was available for 9 of the 11

Chapter #—Prenatal Care ● 7 9

programs. Six of the nine were successful in bringing more women into care early, but only three

of the six with successful outreach and other supplementary services showed an impact on birth

outcomes.

One reason for the lack of consistent results

among the studies may be that the studies represent a diverse mix of prenatal interventions with

different levels of effectiveness. Even under the

rubric of Maternity and Infant Care projects, for

example, services delivered in one geographic area

may be quite different from those provided in

another.

In many studies, no information was provided

regarding the scope of services received by comparison groups. Investigators assumed that

women in the comparison group received less care

than women in the augmented programs. In fact,

because the comparison groups also tend to comprise poor women, some of them may have been

enrolled in comparable programs of specialized

care. Thus, in some studies the differences between the augmented care and comparison services may not have been great.

Table 4-1 .—Summary of 17 Selected Studies of the Effects of Programs Offering Augmented Prenatal Carea

’

b

Impact on initiation of care

NO differences between

comparison and Difference favors Total number

Program characteristics experimental group experimental group No information of studies

Outreach and extra services:

Number of studies . . . . . . . . . . . . . . . . . . . . . 1 4 0 5

Number with significant effect on birth

outcomes c 

. . . . . . . . . . . . . . . . . . . . . . . . . . 0 1 0 1

Extra services (may include outreach):

Number of studies . . . . . . . . . . . . . . . . . . . . . 2 2 2 6

Number with significant effect on birth

outcomes c 

. . . . . . . . . . . . . . . . . . . . . . 2 2 0 4

Extra services only:

Number of studies . . . . . . . . . . . . . . . . . . . . . 1 1 4 6

Number with significant effect on birth

outcomes c 

. . . . . . . . . . . . . . 1 1 2 4

Total number of studies . . . . . . . . . . . . . . 4 7 6 17

Total number of studies with significant

effects on birth outcomesc 

. . . . . . . . . . 3 4 2 9

aprograms Offering augmented prenatal care are programs that provide supplemental services In add it!on to Prenatal medical care These Pro9rams provide one or

more of the following types of special services outreach, transportation, nurse home visitation, nutr!t!on and social services, health education, followup of missed

aPPolntment5, case management/coord lnatton of services, and dental care

bThl~ table dlsplay~ results from 17 of the 25 stud,es of augmented prenatal care programs that appear In table G-3 In app G of this report Eight Of the twenty-five

in table G-3 were exc/uded from this table for the follow!ng reasons 1 ) the study dld not Include a comparison group that received an alternative form of care, 2)

the study examined employee-based health maintenance organ !zatlon programs of care, or 3) the study d!d not report tnformatlon on outreach and Initiation of care

cBlrth outcomes Include low bi rthwelght and neOnatal mOrfal itY

doutreachIn this context means efforts to bring patients Into care early In Pre9nancY

SOURCE Off Ice of Technology Assessment, 1988
80 . Healthy Children: Investing in the Future

The most important explanation for the mixed

results is the limited power of the experiments.

The power of a statistical test—i.e., the probability that a specified difference between the experimental and comparison groups will be detected

in the experiment—depends on the significance

level selected, the size of the effect that one wishes

to detect, and the sample size (113). Very large

sample sizes are needed for adequate power to detect a small but potentially important difference

between program participants and nonparticipants. Most studies do not have a large enough

sample size to detect a difference in birthweight

of the magnitude required for the costs of prenatal care to be outweighed by savings in the costs

of treating low birthweight babies. a

Six studies referred to in table 4-1 examined

augmented programs that included extra services

but no outreach aimed at getting women into care

early. Four of the six showed significant effects

on birth outcomes. These findings suggest that

provision of extra services to adolescents and

high-risk women may be effective in improving

birth outcomes. In some cases, the availability of

supplementary services appears to compensate for

failure to improve patterns of initiation of prenatal

care. For example, home visit services may be a

key component of augmented care. Although the

‘To illustrate, OTA conducted a power analysis on data presented

in Peoples, et al. (486). That study examined an augmented care

program that succeeded in bringing more black women into care

early; however, no significant difference in the low birthweight rate

was found between the experimental and comparison groups. Applying conventional levels of statistical significance and power (0.05

and 0.80 respectively), OTA found that, given the observed differences in the use of first-trimester care, the Peoples, et al., study would

need a minimum of 10,000 participants in each group to detect a

difference in low birthweight rates equal to that detected by Joyce

(i.e., every l-percent increase in the number of women receiving

first-trimester care decreases the low birthweight rate by 0.045 percentage points) (311). The actual sample sizes in the Peoples, et al.,

study ranged from 297 to 1,254.

evidence is limited, such services for adolescents

and high-risk women appear to improve birth outcomes, especially birthweight (169,433,469,725).

Conclusions About the Effectiveness

of Prenatal Care

The weight of the evidence on the effectiveness

of prenatal care, both from studies based on vital records and from studies of programs offering augmented prenatal care services, supports the

contention that birth outcomes can be improved

with earlier or more comprehensive prenatal care.

Indeed, given the design problems inherent in

many studies of programs offering augmented

services, it is noteworthy that so many of them

did detect effects on birthweight or neonatal mortality. The evidence appears to support the value

of both early and frequent prenatal care and the

provision of enhanced services to adolescents and

high-risk women.

Although the evidence clearly supports the effectiveness of prenatal care, it is less revealing

about the size of the effect that can be expected

from increasing the quantity or quality of prenatal care received by any segment of the population. The studies based on vital records data control for self-selection biases to varying degrees and

only very imperfectly at best; one cannot know

how strong the two opposing biases (adverse and

favorable selection) are or to what extent each has

been accounted for in any study. The next section presents OTA’s analysis of the effect size required if an expansion of Medicaid prenatal care

benefits to all pregnant women in poverty is to

pay for itself in net savings in U.S. health care

costs. That effect size is then compared to the findings of several reasonably well-designed effectiveness studies to ascertain how reasonable it is to

expect such an effect.

COST-EFFECTIVENESS OF EXPANDING MEDICAID

TO ALL PREGNANT WOMEN IN POVERTY

If prenatal care can improve birth outcomes, care costs of expanding Medicaid eligibility to all

the logical next question is whether a specific strat- pregnant women in poverty in 1986.9 The Omegy to increase access to effective services is worth ‘Other studies of the cost-effectiveness of prenatal care have exits costs. OTA examined the net effect on health amined the net costs of strategies involving augmented services or
Chapter 4—Prenatal Care . 81

Photo credit March of Dimes Birth Defects Foundation

Some of the costs of treating low birthweight babies

with neonatal intensive care can be prevented with

early prenatal care.

nibus Budget Reconciliation Act of 1986 (OBRA86) (Public Law 99-509) gave States the option of

expanding eligibility to pregnant women whose

family incomes are below the U.S. poverty level

but above the State’s Aid to Families With Dependent Children (AFDC) standards of need (420).

By January 1, 1988, 26 States had elected to exercise that option (271a).

OTA’s analysis presented here is concerned

with the net costs or savings of expanding eligibility that accrue to the U.S health care system

as a whole, not solely to the Medicaid program.

Although Medicaid program administrators must

be concerned with budgetary impacts of their policies, the most appropriate stance from a policy

perspective is to assess the net costs of a specific

strategy to society—not to a particular program.

In the case of a program extending Medicaid benefits to all pregnant women in poverty, Medicaid would pay for services that had previously

been paid for by patients, private insurers, philanthropic organizations, other government agencies,

and providers themselves. These transfers of

expanded benefits to pregnant women. Most such studies look at

net costs to a public program (e. g., Medicaid) and are based on estimates of effectiveness taken from a single study. See table C-4 in

app. G for a review of cost-effectiveness studies of prenatal care.

responsibility for payment are not trivial, 10 but

they cannot be the sole or even principal guide

for public policy.

Because low birthweight is such a costly condition to treat, both in the short run (with neonatal intensive care) and in the long run (with services to chronically ill and disabled children), the

costs of prenatal care must be considered against

the potential savings in these treatment costs from

reducing low birthweight. Thus, the potential for

saving net health care costs depends in a critical

way on the estimates of effectiveness of prenatal

care used in the analysis. Although available evidence generally supports the contention that early

or more prenatal care does improve birth outcomes, it does not provide unequivocal quantitative estimates of the effect of prenatal care on low

birthweight.

OTA’s approach in this analysis, therefore, was

to calculate the reduction in the rate of low birthweight that would be necessary to balance the extra prenatal care costs with equal savings in the

short- and long-run costs of treating low birthweight children. This figure was then compared

to the evidence on the effectiveness of prenatal

care to determine whether the level of effectiveness required for costs to be outweighed by savings is reasonable to expect from the Medicaid expansion strategy. If expansion of prenatal care to

all pregnant women in poverty is not cost-saving

to the U.S. health care system, its costs would

then need to be weighed against its effectiveness

in saving lives and preventing the chronic illness

and disability that is associated with low birthweight.

OTA’s analysis has three major components:

●

●

●

the impact of expanded Medicaid coverage

on the use of prenatal care by pregnant

women in poverty,

the extra costs of providing the additional

prenatal care, and

the savings associated with prevention of a

low birthweight birth, -

Each is discussed below.

‘OThe Medicaid program costs associated with this policy were

estimated by the Congressional Budget office (649).
82 ● Healthy Children: Investing in the Future

Impact of Expanded Medicaid

Coverage on the Use of

Prenatal Care

The Congressional Budget Office estimated that

194,000 pregnant women with incomes below the

poverty level would become eligible for Medicaid if all States adopted the option under OBRA86 (649). About 113,000 of these women would

carry private insurance, and the other 81,000

would be uninsured .11

There are numerous ways to measure changes

in the amount and quality of prenatal care consumed, but OTA’s analysis focuses on increases

in the frequency of care in the first trimester of

pregnancy. Information on the use of prenatal

care by poor women was drawn from the 1982

National Survey of Family Growth (708).

Figure 4-1 summarizes the assumptions made

in OTA’s analysis about expected changes in the

frequency of first-trimester care for the target population as a whole .12 The left-hand column shows

the approximate distribution of care by trimester in the target population without expanded

Medicaid coverage. Among women in the target

population, 42 percent do not get first-trimester

care. OTA assumed that 44 percent of these

women would shift to first-trimester care if they

were eligible for Medicaid. 13 Equal percentages of

those originally receiving second- and thirdtrimester care or no care were assumed to shift

Ilpnor t. gaini% Medicaid eligibility, pregnant women in the target population would either be covered by private insurance or uninsured. For women with private insurance, Medicaid would pay for

maternity services not covered by private plans and all coinsurance

and deductible amounts. For the uninsured, Medicaid would cover

all maternity care. The Congressional Budget Office assumed that

90 percent of the women without private health insurance and 60

percent of those with private insurance would enroll in Medicaid

(649).

IZThe 19g2 National Survey of Family Growth divided women

into five categories according to source of payment for delivery.

Three of these categories were relevant to OTA’S analysis: the privately insured, the uninsured, and Medicaid recipients. The OBRA86 target population comprises privately insured (58 percent) and

uninsured women (42 percent). On the basis of National Survey of

Family Growth data, OTA computed a weighted average of firsttrimester use by privately insured and uninsured women to estimate

first-trimester use in the target population as a whole.

ljAccordiW to other data from the 1982 National Survey of Family

Growth (708), 44 percent of Medicaid recipients get first-trimester

care.

Figure 4-1 .—Assumptions in OTA’s Base Case

Analysis About Changes in the Use of

First-Trimester Prenatal Care

Distribution of

prenatal care

without Medicaid

coverage

trimester

(58% )

Second

trimester

(35%)

Third

trimester

SOURCE Off Ice of Technology Assessment, 1988

Distribution of

prenatal care

with Medicaid

coverage

First

trimester

(760/o)

Second

trimester

(200/0)

to first-trimester care.14 Overall, 18.5 percent of

the target population (0.42 X 0.44) who would

otherwise not obtain first-trimester care would begin care in the first trimester if they became eligible for Medicaid.

OTA assumed that all changes in the pattern

of prenatal care use would be shifts to firsttrimester care. No adjustments were made for

shifting from third-trimester care to secondtrimester care, for example. These assumptions

ltThe National Survey of Family Growth data (708) did not separate initiation of care in the third trimester from no care. For cost

calculations, OTA made separate estimates of the number of pregnant women in each of these two groups. Based on Texas data for

a Medicaid population (399), OTA assumed that 25 percent of those

in the third-trimester/no-care group actually received no care.
Chapter 4—Prenatal Care ● 8 3

may have resulted in an overestimation of both

the total incremental costs and the effectiveness

of prenatal care. (See app. G for further information on expected changes in the use of prenatal care. )

Incremental Costs of

Early Prenatal Care

To estimate the incremental costs of providing

early prenatal care to the new users, OTA assumed that prenatal care commencing in the first

trimester of pregnancy would include 3 more visits

than prenatal care beginning in the second trimester; 6 more visits than prenatal care beginning in

the third trimester; and 12 more visits than prenatal care received by women who had previously

gone with no prenatal care (312).

OTA estimated the cost of these extra physician visits from a 1986 survey of physician fees

(334). The incremental per person cost of firsttrimester care over second-trimester care was estimated to be $90; the incremental per person cost

of first-trimester care over third-trimester care to

be $180; and the incremental cost of first-trimester

care over no care at all to be $380.15

Using these assumptions, OTA estimated that

net national prenatal care costs associated with

the additional prenatal care received by the target population in 1986 would be $4 million.

Savings From the Prevention

of Low Birthweight Births

Preventing low weight births saves costly care

in the initial hospitalization of low birthweight

babies, in subsequent rehospitalizations for which

low birthweight babies are disproportionately at

risk, in more frequent and intensive health care

due to a high incidence of chronic illness and disability in low birthweight babies, and in long-term

I sThe ~r “l~lt rates ($50 IOr an initial visit and $30 for each revisit)

were based on obstetrician office visit charges, which tend to be

higher than similar charges for physicians in other specialty areas

who also provide prenatal care (e. g., family practitioners and general practitioners; see ref. 334 J. Thus, the costs of prenatal care may

be somewhat overestimated given that prenatal care is not exclusively provided by obstetricians.

costs associated with institutional or foster care

and special education for more seriously disabled

children.

The costs of these kinds of health care cannot

be estimated with a great deal of precision. Consequently, OTA estimated a range within which

such costs are very likely to lie. The net additional

costs incurred in the treatment of low birthweight

babies over the costs incurred for normal birthweight babies was estimated for three major categories:

1. costs of initial hospitalization (including hospital costs and physician fees);

2. costs of rehospitalizations in the first year

of life (hospital costs only); and

3. long-term costs of institutional care, foster

care, early intervention, special education

and adult services provided from ages 1 to

35 for surviving disabled low birthweight

babies.

Cost of Initial Hospitalization

Data on hospital costs for newborn care by

birthweight category are available from the State

of Maryland (294).16 Including both routine newborn care and neonatal intensive care costs, the

average cost per hospital stay for a low birthweight infant in 1986 was $5,894 (in 1986 dollars).

For babies weighing more than 2,500 grams, the

average cost per discharge was $658. Thus, the

extra cost of hospital care for a low birthweight

baby was $5,236 in 1986.

The results of a recent study have suggested that

the costs of neonatal intensive care might be reduced by discharging babies sooner without negative impacts on infant health (72). In that study,

the net savings from the program were 25.6 percent of hospital and physician charges. Using these

results as a rough guide, the costs of treating low

birthweight newborns in the hospital might be reduced by about 25 percent. In that case, the extra costs of initial hospitalization associated with

low birthweight might be reduced to $3,763.

Ih]n 19g6, the average hospital cost per admission in Maryland

was within one-half percent of the national average cost per admission (4Q3 ).
84 ● Healthy Children: Investing in the Future

OTA’s analysis used this amount as the lower

bound of the range of net newborn hospitalization costs.

Not only are costs incurred for hospital care

in the newborn period, but costs are also incurred

for the visits physicians make to newborn babies

in the hospital. Data on physician visits to newborns are not available, but several studies and

reports from individual institutions indicate that

physician charges for care to infants in neonatal

intensive care units lie somewhere in the range of

10 to 20 percent of total hospital charges (330,494,

497,736). This range of rates was applied to the

Maryland hospital cost data. 17

Cost of Rehospitalizations

Low birthweight infants have higher rates of

respiratory, gastrointestinal, and infectious illness

than do infants born at normal weights (411,665).

McCormick and colleagues reported on rehospitalization rates by birthweight in the first year of

life in eight regions of the country in 1978-79

(411). Nineteen percent of low birthweight infants

who survived the first year, as compared to 8.4

percent of normal birthweight babies, were rehospitalized at least once during the first year of

life. Days spent in the hospital averaged 2.1 for

low birthweight infants compared to 0.7 for normal birthweight infants .18 Thus, each low birthweight birth accounted for an average 1.5 extra

days in the hospital after the initial hospitalization.

In 1986, the national average daily cost for a

hospital stay was $535 (26). Thus, the extra cost

of rehospitalization in the first year was roughly

$800 per low birthweight birth. This is a conservative estimate for three reasons. First, the daily

cost of an infant’s hospital stay is probably higher

than the average across all patients, Second, the

rates of rehospitalization were based on the experience of children who survived infancy. Those

who survived the initial hospitalization but did

not survive infancy were likely to have very high

lzMaV]and’s hospita] cost data were converted to charges by applying the statewide ratio of charges to cost. Physician charges were

then calculated from that amount.

IsThis ~timate is the average across a]l births, not just survivors.

Estimates were adjusted to account for survival rates in the low and

normal weight categories.

rates of hospitalization. Finally, this estimate does

not include the fees paid to physicians for visits

to rehospitalized infants.

Long-Term Health Care Costs

In addition to the extra burden of short-term

medical care associated with these children, longterm costs result from early intervention programs, 19 special education, and, sometimes, institutional or foster care.

OTA’s analysis makes certain assumptions regarding the types of care that children will receive

over their lifetimes and the costs of that care (as

specified below). In particular, it is assumed that:

●

●

●

●

all infants surviving at 1 year will survive to

age 35, regardless of their level of disability;

costs of care received are calculated only to

age 35;

the severity of developmental disability as

evaluated at age 1 is constant through age

35; and

the costs of services (i. e., early intervention,

special education, and institutional or foster

care), by level of disability, are the same as

the costs of these services provided to severely and moderately mentally retarded

people.

Many assumptions were necessary regarding

the kinds of care that disabled children would receive over their lifetimes, the costs of providing

different levels of care, and the discount rate that

should be applied to costs incurred in more distant years. Appendix G contains a detailed description of OTA’s analysis of long-term costs and

of all assumptions underlying the estimates of

long-term costs. In brief the expected net longterm (until age 35) cost of low birthweight is between approximately $9,000 and $23,000 per

birth. Or, restated, the net long-term savings in

l~Early intemention programs are broadly defined by the Education of the Handicapped Act Amendments of 1986 (Public Law 99-

4s7) as developmental services provided to handicapped infants or

toddlers. These services include: family training, counseling, and

home visits; special instruction; speech pathology and audiology;

occupational therapy; physical therapy; psychological serwices; case

management services; medical services only for diagnostic or evaluation purposes; early identification, screening, and assessment services; and health services necessary to enable the infant or toddler

to benefit from the other early intervention services.
Chapter 4—Prenatal Care ● 8 5

health care costs that would be gained by preventing each low birthweight birth (i. e., by moving

it to the normal weight category) lie somewhere

in the range of $9,000 to $23,000.

Net Health Care Savings Per

Averted Low Birthweight Birth

Table 4-2 summarizes the net incremental costs

associated with each low birthweight birth or, alternatively, the net savings associated with the

prevention of each such birth. Estimated net savings per averted low birthweight birth range from

about $14,000 to $30,000.

Table 4-2.—Net Incremental Health Care

Costs of a Low Birthweight Birth

Low-cost High-cost

estimate estimate

Initial hospitalization cost:

● Hospital costs . . . . . . . . $3,763 $ 5,236

● Physician costs . . . . . . . . 475 1,487

Total . . . . . . . . . . . . . . . . . $4,238 $6,723

Rehospitalization costs in

first year (hospital costs

only) ., . . . . . . . . . . . . . . . . $ 802 $ 802

Long-term costs of treating

low birthweight . . . . . . . . $9,000 $23,000

Total net incremental

costs . . . . . . . . . . . . . . . $14,040 $30,525

SOURCE Off Ice of Technology Assessment, 1988

Required Level of Effectiveness

of Prenatal Care

If Medicaid were extended to all pregnant

women in poverty, how effective would early

prenatal care have to be for the estimated $4 million costs to be outweighed by savings from the

prevention of low birthweight births? For health

care costs to break even, early prenatal care

among the 194,000 newly eligible women would

have to prevent between 133 and 286 low birthweight births. If the low birthweight rate (i. e., the

percentage of live births with birthweights of

2,500 grams or less) in the target population is

about 10.2 percent,20 the number of low birthweight births would have to decline by between

ZONational data on the low birthweight rate among poor women

are unavailable, but the low birthweight rate among women with

less than 12 years completed years of schooling is 10.2 percent (709).

0.7 and 1.4 percent; the low birthweight rate in

the target population would have to decline by

between 0.07 and 0.20 percentage points to a rate

of between 10 and 10.13 percent.

The reduction in the low birthweight rate would

be concentrated in the subset of the target population whose use of prenatal care changed as a

result of expanded benefits. Overall, 18.5 percent

of the newly eligible women, or 35,890 women,

are assumed to switch from later or no prenatal

care to first-trimester care as a result of the expansion of Medicaid eligibility. If these women

began with a low birthweight rate of 10.2 percent,

then the low birthweight rate among them would

have to decline by between 0.4 and 0.8 percentage

points to a rate of between 9.4 and 9.8 percent.

Given the available information on the effectiveness of prenatal care, is it reasonable to expect reductions of this magnitude in the low birthweight rate? The evidence on the impact of earlier

or more prenatal care on birthweight suggests that

it is. The quantitative results of four studies with

relatively good control over self-selection provide

some perspective on what can be expected from

programs that increase access to early prenatal

care for poor women (149,311,600,659).

In a national study of live births in the United

States in 1974, Eisner and colleagues found that

after controlling for maternal age, marital status,

maternal education, prior pregnancy interval,

birth order, and prior pregnancy losses, women

who received no prenatal care were between two

and five times more likely to deliver a low birthweight baby, depending on the mother’s race and

the number of prior pregnancies, than were

women who had received some prenatal care prior

to delivery (149). Taking the most conservative

estimate, these results imply that receipt of some

prenatal care reduces the probability of low birthweight by 50 percent. This difference is many

times greater than the required difference in

OTA’s analysis, but the comparison was between

some care and no care, not between first-trimester

care and later care. Getting some prenatal care

may be more important to birthweight than getting early care.

In a 1981-82 study of births to mothers who

were Medicaid recipients in Missouri, the ade-
86 ● Healthy Children: Investing in the Future

quacy of prenatal care (measured by an index

based on trimester in which care began and number of visits adjusted for gestational age at birth)

was found to be related to the low birthweight

rate (659). In 1981, women receiving adequate

prenatal care had a low birthweight rate of 10.6

percent as compared to 12.6 percent for women

whose prenatal care was judged to be inadequate.

(Similar differences were found in 1982. ) Thus,

moving from the inadequate to the adequate care

category implied a reduction of 16 percent in the

probability of a low birthweight birth. This percentage reduction is at least double the percentage reduction in the low birthweight rate among

new users of early prenatal care (4 to 8 percent)

that is required for net savings to accrue to the

health care system. Apart from the fact that all

births were to Medicaid recipients, however, this

study had no controls for self-selection biases.

Joyce analyzed the low birthweight rate in U.S.

counties from 1976 to 1978, controlling for the

rate of use of family planning by teenagers, the

abortion rate, the availability of neonatal intensive care units, resident’s smoking rates, the rate

of births to teenagers, the birth rate of older and

high-risk women, and the population density of

the county (311). For whites, every l-percent increase in the proportion of women receiving firsttrimester care decreased the low birthweight rate

by 0.029 percentage points. An increase of 18.5

percent in the percentage of women getting firsttrimester care (as predicted in OTA’s analysis)

would correspond to a decrease of 0.5 percentage points in the low birthweight rate. This is

more than twice the percentage point decrease required for health costs to break even in OTA’s

analysis (i. e., between 0.07 and 0.20 percentage

points). Although Joyce’s study is a county-level

analysis, which can mask relationships occurring

at the individual level, its findings strongly support the conclusion that the Medicaid expansion

of prenatal care would be cost-saving to the U.S.

health care system if adopted nationally.

In a study of low-income women who gave

birth in a Cleveland hospital, a group of women

who were eligible for a Maternity and Infant Care

project because of their county of residence was

compared with a group who resided in a county

with similar socioeconomic and demographic

characteristics but whose residents were not eligible for the program (600). Almost 48 percent of

the program participants registered for care in the

first trimester, as compared to 35 percent of

women in the comparison group. The low birthweight rate was 11.7 in the program participants

and 14. o in the comparison group. Thus, a difference of 13 percentage points in first-trimester use

was associated with a difference of more than 3

percentage points in the low birthweight rate. The

decline observed in this study is more than three

times the percentage point decline required among

new users in OTA’s analysis (i.e., between 0.4 and

0.8 percentage points). Of course, some part of

the differences may have been due to either more

intensive services offered to the program women

once they did register or systematic differences in

the patient populations (e.g., some pregnant

women residing in the county without the program may have been motivated to seek care at

a hospital offering good services). The magnitude

of the effect, however, seems to leave enough leeway to account for such potential biases.

In summary, the evidence from four studies that

relate early receipt of prenatal care to birthweight

strongly suggests that the effect size that might

be reasonably expected from increasing the use

of early prenatal care is at least as great as that

required to justify early care on the basis of net

savings to the health care system. That early

prenatal care will also prevent some infant deaths

(though the number cannot be predicted with any

certainty) further enhances its cost-effectiveness.

ACCESS TO PRENATAL CARE: THE ROLE OF THIRD-PARTY

PAYMENT AND ALTERNATIVE FUNDING SOURCES

The ability to pay for health care services is an Two major insurance options are available to pay

important determinant of who receives care (653). for maternity care. Medicaid is the major public
Chapter 4—Prenatal Care ● 8 7

financing program for pregnant women who are

poor. Private insurance also provides maternity

care coverage for women at all income levels. Two

major financing alternatives to public and private

insurance coverage for maternity care are the

Maternal and Child Health (MCH) services block

grant program and community health centers

(CHCs). Available information regarding eligibility, benefits, and reimbursement under each

source of funding is summarized below. A broader

discussion of these funding sources, particularly

as they pertain directly to children, is presented

in chapter 3,

Medicaid

Eligibility

Medicaid eligibility takes one of two major

forms. Historically, automatic categorical eligibility for poor women has been directly tied to

eligibility for cash assistance through the AFDC

program. In addition, States have the option to

cover a wide range of groups through medically

needy provisions. Medically needy programs include “. . . people who are not recipients of cash

assistance, but who fit into one of the categories

of people covered by the cash assistance programs

and whose income and assets fall within the medically needy standards or who spend-down, because of their medical bills, to the medically needy

standards” (674).

Requirements and options for Medicaid eligibility have gone through a number of important

changes during the 1980s. Under the Omnibus

Budget Reconciliation Act of 1981 (OBRA-81)

(Public Law 97-35), the changes resulted in the

loss of Medicaid coverage and eligibility for substantial numbers of poor people. Between 1975

and 1984, the percentage of the poor covered by

Medicaid dropped from 63 to 46 percent (544).

In 1984 and again in 1986 and 1987, however,

Congress enacted legislation that reversed some

of the Medicaid eligibility restrictions under

OBRA-81 (104,544). Medicaid coverage is currently mandated for all pregnant women with family incomes and resources below State AFDC

financial eligibility requirements. OBRA-87 (Public Law 100-203) allows States the option of

providing maternity care benefits to all pregnant

women whose family incomes are at or below 185

percent of the Federal poverty level.

Anecdotal data suggest that even when women

are eligible, the Medicaid enrollment process itself can be a formidable barrier to the receipt of

timel y care. States have 45 days to process an application for Medicaid, but additional delays can

be encountered when applications are incomplete

or when other impediments arise. A General

Accounting Office survey of poor women in 32

communities who gave birth found that about 6

percent of women who attempted to enroll for

Medicaid experienced long delays in receiving

notification of eligibility. The median time between application and a determination of eligibility for these women was 8 weeks (653). Furthermore, many health care providers have been

reluctant to offer care to women in anticipation

of their eligibility for Medicaid, because providers

have feared retroactive denial of eligibility and

nonpayment for the services rendered (185). Under OBRA-86, a “qualified provider” can provide

services to women presumed to be eligible and be

guaranteed of Medicaid reimbursement even if

eligibility is ultimately denied. “Qualified” providers include health departments, hospitals, and

clinics. The “presumptive eligibility” clause is not

applicable to private physicians’ practices. Thus,

the presumptive eligibility clause of OBRA-86 appears to channel pregnant women who are probably eligible for Medicaid into sources of prenatal care other than private practices,

Some local providers have tried to institute policies that help overcome barriers to the timely

receipt of prenatal care. One study found that

when hospitals provide resources to help uninsured patients enroll in Medicaid and verification

procedures are relaxed, poor women initiate care

earlier in pregnancy (309). Barriers in the

Medicaid enrollment process may encourage

women to seek care through non-Medicaid programs and may in part explain why poor women

who should be eligible for Medicaid sometimes

fail to enroll and remain uninsured.

Benefits

Under Medicaid, some services are mandated,

while others are optional. Also, States may place

limits on the extent of both required and optional

services which can be billed to Medicaid. Required

services include inpatient and outpatient hospi-
88 ● Healthy Children: Investing in the Future

tal care, physician care, laboratory tests, X-rays,

family planning, and nurse midwife services21

among others. Clinic services, prescription drugs,

diagnostic and screening services, and dental care

are optional services.

Some observers contend that these optional

services are important features of comprehensive

prenatal care and, in many States, are unavailable (209). In 1985, for example, five States did not

cover services provided by clinics, a major source

of health care for poor women. Ten States set

limits on the number of outpatient hospital visits22

and physician visits that could be reimbursed by

Medicaid; these limits were less than the 12 to 13

prenatal care visits recommended by the American College of Obstetricians and Gynecologists

or would have precluded frequent visits during

the third trimester (209). Pregnant adolescents

may be able to avoid some of these restrictions

on benefits by virtue of their eligibility for extended care through the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program

within Medicaid. It is unclear, however, how

many States utilize EPSDT to provide more comprehensive services to pregnant teens (209).

The Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA) (Public Law 99-272)

expanded service-related benefits for pregnant

women in three ways (104). First, it mandated an

additional 60 days postpartum coverage for all

women whose Medicaid eligibility was based

solely on their pregnancy status. Second, COBRA

permitted States to provide enriched services to

pregnant women without extending such benefits

to other Medicaid eligibles. Finally, it permitted

case-management services (e. g., outreach, referral, and service coordination) to be provided to

recipients.

Physician Participation in Medicaid

Physicians’ refusal to accept Medicaid reimbursement for maternity care in private practice

settings has been widely considered to be a maZIA State’s Medicaid P]an must provide coverage of nurse midwife services for the categorically needy to the extent that nurse midwives are authorized to practice under State law or regulation (42

CFR 440.210).

ZZIn a suwey of 30 States, Rosenbaum (542) found that 24 States

also placed some limit on covered inpatient hospital days.

jor barrier to poor women’s obtaining prenatal

care. Only one recent study directly assessed this

issue. In a 1983 national probability sample survey of private physicians likely to provide reproductive health services, the Alan Guttmacher Institute found that among physicians who actually

provide obstetric care, 56 percent reported that

they accepted Medicaid reimbursement (473).23

Reasons given for low Medicaid participation

rates among physicians include low reimbursement rates and onerous administrative procedures. Data on physician participation presented

in appendix E clearly indicate that fees for obstetrical care paid by Medicaid are losing ground to

private fees.

Furthermore, payment by Medicaid tends to be

delayed because of administrative procedures.

Most States reimburse for Medicaid-financed

maternity care through a global fee covering

prenatal, delivery, and postpartum care. Physicians generally cannot bill Medicaid for such care

until after the delivery, a requirement that in some

cases delays reimbursement for a year or more.

Additionally, in some States, doctors must receive

prior authorization for the delivery of certain

types of services, thereby increasing the paperwork involved in serving Medicaid recipients

(431).

Private Insurance

Private health insurance in the United States is

largely provided through employers. For women

who work, such insurance is often available

directly; for other women, it maybe available indirectly via family coverage purchased through

the workplace by a parent or spouse. In 1984,

about 67 percent of women aged 15 to 44 were

covered by a group health insurance plan (209).

Group coverage is strongly related to income

level. In 1984, over 80 percent of women with

family incomes at or above 250 percent of the Federal poverty level were covered by a group plan,

as compared to only 17 percent of women with

family incomes at or below the Federal poverty

level.

“Other data are also available, but they do not specifically address physician acceptance of Medicaid reimbursement for maternity care. See app. E for a review of the evidence on physician participation in Medicaid.
Chapter 4—Prenatal Care ● 8 9

In 1978, Congress passed the Pregnancy Discrimination Act (Public Law 95-555), changing requirements for maternity care benefits in group

health insurance plans. This law required employers who offered health insurance to provide

maternity care benefits in the same manner. Firms

with fewer than 15 employees and individual insurance policies were exempted from the law’s requirements (209).

Maternity care benefits vary from policy to policy, although detailed information on these benefits is sketchy (209,543). Most insurance plans

provide some coverage for laboratory tests and

drugs, but information regarding coverage for

special diagnostic procedures such as ultrasound

or amniocentesis is generally unavailable. Data

on the number of prenatal care visits that insurance plans will reimburse are also unavailable.

Hospital room and board charges usually make

up the bulk of maternity care expenses. In 1980,

almost all coverage for such charges was limited

by a deductible or coinsurance requirements or

had an individual benefit maximum (105).

Alternatives to Public and

Private Insurance

Some poor women are able to obtain prenatal

care without the benefit of Medicaid or private

insurance coverage. Typically, they must rely on

health care providers who offer reduced fee schedules or who provide a certain amount of uncompensated care. Services for many poor women are

provided by CHCs and are also often financed

through the MCH block grant program.

Maternal and Child Health Services

Block Grant Program

The MCH block grant program represents the

major Federal maternity care funding alternative

to public and private insurance. The MCH block

grant consolidated seven health programs for

women and children: maternal and child health,

services for disabled children receiving supplemental securit y income, prevention of lead poisoning,

genetic diseases, sudden infant death syndrome,

hemophilia treatment, and prevention of adolescent pregnancy (209). Federal MCH block grants

are awarded to the States, which in turn provide

grants directly to public and private providers of

maternal and child health care or crippled children’s services (209,541).

States have wide latitude in establishing who

is eligible for services and what those services can

be. Expenditures for specific services (e.g., prenatal care v. well-child care) under the MCH block

grant program are nearly impossible to identify,

largely because the Federal Government does not

require the collection or reporting of pertinent

data. This problem is exacerbated by the fact that

there are no requirements regarding minimum

services and eligibility, As a consequence, very

little is known about who receives what types of

services under the MCH block grant (209).

Community Health Centers

The CHC program is one of the largest categorical grant programs, providing maternal and

child health care, as well as other services, to residents of medically underserved areas (224). In fiscal year 1985, CHCs received $383 million in Federal funding (772) (see ch. 2). Rosenbaum (543)

reports that nearly half of all CHC users are completely without health insurance. In addition, over

one-quarter (28.6 percent) of CHC users are in

their childbearing years.

CHCs offer a wide range of services (224). Certain services, called “primary health services, ” are

provided by all CHCs. These include preventive

health services (e.g., perinatal care, family planning), diagnostic care, emergency care, and transportation. Other services, called “supplemental

health services, ” are provided at the grantee’s option. Such services include hospital care, health

education, and dental and vision care, among

others. Charges for care received at CHCs are usually assessed on a sliding fee scale, with families

living below the Federal poverty level eligible for

free care.

Strengths and Limitations of Alternative

Mechanisms for Financing Maternity Care

A critical question for the development of policy regarding prenatal care is which approach is

the most effective in increasing access to prenatal care services:
90 . Healthy Children: Investing in the Future

1.

2.

3.

an insurance program such as Medicaid?

Federal grants to States, which in turn distribute funds to local providers, such as the

MCH block grant? or

direct grants to health care providers such

as the current CHC program model?

CONCLUSIONS

Taken together, the weight of the evidence on

both routine prenatal care and augmented prenatal care suggests that birth outcomes can be improved when women receive earlier or more

comprehensive prenatal care. Although available

studies of the effectiveness of prenatal care generally support the contention that prenatal care does

improve birth outcomes, they do not provide

definitive quantitative estimates of these effects.

OTA examined how costs to the U.S. health

care system (not just to Medicaid) and birth outcomes would be affected by a policy of making

pregnant women in poverty universally eligible

for Medicaid. Such a policy could be implemented if every State were to expand eligibility to all

pregnant women with incomes up to the poverty

line, or if Congress were to require, rather than

permit, States to provide such coverage. OTA calculated what percentage reduction in the low

birthweight rate would be necessary to balance

the extra prenatal care costs with equal savings

in short- and long-term health care costs. This estimate was then compared to available evidence

on the effectiveness of prenatal care to determine

Which approach encourages the most effective

provision of maternity care? OTA was unable to

locate any studies that addressed these important

questions.

whether the estimate lies within reasonable

bounds.

Overall, OTA found, offering Medicaid eligibility to all pregnant women in poverty would

cause an additional 18.5 percent of women in this

category to initiate prenatal care in the first

trimester of pregnancy. Nationally, the extra

prenatal care would cost about $4 million per

year. Expected short- and long-term savings in

health care costs associated with the prevention

of each low birthweight birth are so great (between $14,000 and $30,000), however, that prenatal care would need to have only marginal effects

on birthweight to be justified on cost grounds

alone. The required level of effectiveness for the

breakeven point is well below the order of magnitude of the effects found in several reasonably

well-designed studies of prenatal care. In addition,

by reducing the incidence of low birthweight, better prenatal care for poor women would also save

some (though relatively few) infant lives, and

prenatal care may have effects on infant mortality independent of its effects on birthweight.
Chapter 5

Newborn Screening for

Congenital Disorders
CONTENTS

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 93

Factors Affecting the Effectiveness of Newborn Screening . . . . . . . . . . . . . . . . . . . . 97

Percentage of Affected Infants Detected.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 98

Organization and Management of Newborn Screening Services . . . . . . . . . . . . . 98

Timing and Number of Newborn Blood Specimens . .......................100

Laboratory Performance: Quality Assurance and Proficiency Testing

Programs . . . . . . . . . . . . . . . . . . . . . . . +........ . .........................102

Cost-Effectiveness of Seven Newborn Screening Strategies. . ..................103

Components of OTA’s Cost-Effectiveness Analysis . .......................105

Findings of the Base Case Analysis . . . . . . . . . . . ...........................106

Components and Findings of the Sensitivity Analysis . . . . . . . . . . ............108

Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .........................109

Costs of Laboratory Testing for Four Additional Disorders . . . . . . . . . ..........111

Biotinidase Deficiency . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ................111

Sickle Cell Anemia. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ................112

Cystic Fibrosis. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......................112

Congenital Adrenal Hyperplasia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ., ......112

Financing and Reimbursement for Newborn Screening and Treatment . ........112

Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. .. .. .. .. .. .. .. .. 4.. ... <...114

Box

Box No. Page

s-A. Process of Newborn Screening and Treatment. . . . . . . . . . . . . . . . . . . . . . . . . . 97

Figure

Figure No. Page

S-I. Newborn Screening Strategies Compared in OTA’s Cost-Effectiveness

Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...................,.,....104

Tables

Table No. Page

5-1. Nine Congenital Disorders Currently Detectable by Newborn Screening . . . 94

5-2. Effectiveness of Newborn Screening and Early Treatment for Nine

Congenital Disorders . . . . . + . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95

5-3. Percentage of Affected Infants Detected by Newborn Screening for Five

Congenital Disorders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 99

5-4. Effectiveness and Health Care Savings of Newborn Screening Strategy I

Compared to No Screening. ...... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...107

S-S. Incremental Effectiveness and Health Care Costs of Newborn

Screening Strategies Compared to Strategy I..... . ......................107

5-6. Sensitivity Analysis: Net Health Care Savings and Number of Cases

Detected by Strategy I Compared to No Screening. . . . . . . . . . . . . . . . . ... ..110

5-7. Sensitivity Analysis: Incremental Effectiveness and Health Care Costs of

Newborn Screening Strategies Compared to Strategy I . . . . . . . . . . . . . . . . ...110
Chapter 5

Newborn Screening for

Congenital Disorders

INTRODUCTION

The screening of large populations of newborns

for congenital disorders began as a public health

activity in 1961 with screening for phenylketonuria

(PKU). PKU, an inherited disorder of metabolism

of the amino acid phenylalanine, occurs in about

1 in 10,000 to 1 in 15,000 infants and is associated with severe mental retardation unless treated.

The goal of newborn screening for this disorder

is to detect the condition in the first week of life,

confirm the diagnosis, and initiate treatment before 2 to 4 weeks of age. If the treatment is begun

by this time and maintained at least throughout

the child’s development, the irreversible mental

retardation that is the natural consequence of untreated PKU can be avoided.

Newborn screening has generally been limited

to diseases such as PKU that are not clinically recognizable in time to treat before severe and irreversible consequences have occurred (57,442).

These are diseases that are present throughout the

life of an affected individual, do not get better

(and often worsen) with time, and can result in

severe mental retardation, physical disabilities,

and even sudden death if untreated in the first

days or weeks after birth. Although the number

of conditions that fall into this category is small,

and each of these conditions is relatively rare,

newborn screening followed by early and sustained treatment can make the crucial difference

in affected infants. Information about the incidence and natural course of PKU, congenital

hypothyroidism, galactosemia, maple syrup urine

disease (MSUD), and several other disorders that

can be detected through tests on a blood specimen taken in the neonatal period are summarized

in table s-1. I

] More detailed information about these and other disorders is presented in app. H.

Photo credit: March of Dimes Birth Defects Foundation

Screening newborns for certain congenital disorders can

serve a critical function —alerting physicians to the need

for treatment of infants who may not yet show signs or

symptoms of a disorder.

In most States, newborn screening is mandated

by law, except in the case of parental refusal on

religious or other grounds. In a few States (North

93
94 . Healthy Children: Investing in the Future

Table 5-1 .—Nine Congenital Disorders Detectable by Newborn Screening

Approximate Incidence

Disorder per 100,000 births Problem

Phenylketonuria (PKU) 7

Congenital hypothyroidism 29

(CH)

Galactosemia (GA) 2

Maple syrup urine disease 0.4

(MSUD)

Homocystinuria (HC) 0.5

Blotinidase deficiency (BD) 3

Sickle cell anemia (SCA) 32

Cystic fibrosis (CF) 40

Congenital adrenal 5

hyperplasia (CAH)

SOURCE Office of Technology Assessment, 1988

Carolina, Delaware, Vermont,

Impaired metabolism of the amino acid

phenylalanine

Deficiency of the hormone thyroxine

needed for brain development and

physical growth

Deficiency of the enzyme needed to

metabolize galactose, a type of sugar

in milk

Deficiency of the enzyme needed to

metabolize branched-chain amino acids

Deficiency of the enzyme needed to

metabolize the amino acid

homocystine

Deficiency of the enzyme needed to

metabolize the B vitamin biotin

Abnormality of the red blood cells that

causes them to be sickle-shaped

Disorder of the exocrine glands whose

cause is unknown

Inability to produce the hormones

needed to manage stress and to

control, salt content of tissues,

combined with the excessive buildup

of male hormones —.

and the District

of Columbia) newborn screening is voluntary

(32). Newborn screening for PKU and another

condition—congenital hypothyroidism—is now

conducted in all 50 States and the District of Columbia. Congenital hypothyroidism, resulting in

a deficiency of the hormone thyroxine, is much

more common than PKU, affecting about 1 in

3,000 to 1 in 4,000 infants. Like PKU, this disorder

can cause permanent brain damage if untreated

or treated too late. In addition to offering the tests

for PKU and congenital hypothyroidism, some

States offer tests for other disorders: 35 States test

for galactosemia, 24 States test for MSUD, and

22 States test for homocystinuria (640a).2 Galactosemia, MSUD, and homocystinuria are less

‘A few programs also offer screening tests for a number of other

rare metabo] ic disorders, such as t yrosinemia or histidinemia,

Natural course without

adequate treatment

Severe mental retardation, shortened

lifespan

Mental retardation, physical

abnormalities, premature death,

abnormal growth

Life-threatening septicemia and liver

damage in infancy; mental retardation

and cataracts in survivors; leads to

death if untreated

Life-threatening acidemia and necrologic

dysfunction in infancy, mental

retardation in few survivors; leads to

death if untreated

Developmental retardation, dislocation of

ocular lenses, life-threatening

thrombosis, skeletal manifestations

Life-threatening necrologic dysfunction,

developmental delay and hearing loss

in survivors (milder and asymptomatic

cases may occur)

Life-threatening infections especially in

infancy, chronic hemolytic anemia and

vaso-occlusive crises in childhood and

adulthood, risk of premature death,

shortened lifespan

Poor growth, digestive problems, lifethreatening chronic obstructive lung

disease with recurrent pneumonia; risk

of death in early adulthood

Life-threatening salt-wasting crises for

some in infancy, reproductive

dysfunction, and abnormal physical

development

common than PKU, but all of them have serious

adverse consequences if left untreated.

Recently, the scope of routine newborn screening has expanded to include tests for several additional diseases, some of which are more common in certain populations than PKU, but not all

of which are as treatable as PKU. An increasing

number of programs have begun pilot screening

projects for biotinidase deficiency and sickle cell

anemia, and a small number of programs are beginning to screen for cystic fibrosis and congenital adrenal hyperplasia. OTA found that as of

1986, approximately 18 States were screening for

biotinidase deficiency, 9 States were offering tests

for sickle cell anemia, 3 States were offering tests

for cystic fibrosis, and at least 2 States were

screening for congenital adrenal hyperplasia. Information about the effectiveness of newborn

screening and treatment for these and other congenital disorders is presented in table 5-2.
Chapter 5—Newborn Screening for Congenital Disorders ● 9 5

— .- —

Table 5-2.—Effectiveness of Newborn Screening and Early Treatment for Nine Congenital Disorders

Disorder

Phenylketonuria (PKU)

Congenital

hypothyroidism (CH)

Galactosemia (GA)

Maple syrup urine

disease (MSUD)

Homocystilnurla (HC)

Biotinidase deficiency

(BD)

Sickle cell anemia (SCA)

Cystic fibrosis (CF)

Congenital adrena l

hyperplasia (CAH )

Optimal screening

time after birth

3-5 days

3-5 days

Before 5 days (or in

cord blood taken

at birth)

1-5 days

3-4 weeks

Before 5 days

1st week

1st week

2-5 days

SOURCE Off Ice of Technology Assessment 1988

Treatment following screening

Phenylalanine-restricted dietary products

continued indefinitely

Thyroxine supplements Indefinitely

Elimination of galactose-containing food s

indefinitely

Dietary restriction of branched-chai n

amino acids indefinitely

Dietary restriction of methionine and

supplementation of cystine and vitamin

B 6 indefinitely

Oral biotin supplements

Prophylactic penicillin and pneumococca l

vaccine, ongoing supportive therapy

Prophylactic vitamin and salt

supplements, pancreatic enzyme

replacement therapy, antibiotics .

supportive respiratory therap y

Intravenous salt solution, hormone

therap y

Effectiveness of screenin g

and early treatmen t

Normal mental and physical development

Normal mental and physical developmen t

Life saved in neonatal period, norma l

mental and physical development in

majority of cases. coordination and

speech problems; gonadal failure i n

some female s

Life saved in neonatal period norma l

mental and physical development, risk

of sudden death at a later age in som e

cases

Normal mental development, som e

physical problems may remain

Life saved in neonatal period for som e

or avoidance of neurologic damage

Reduce risk of death in infancy and early

childhood from complications of

Infect Ion

May improve growth and development in

childhood, long-term effects under

investigation

Life saved in neonatal period for some ,

aid sex assignment in infant girls with

CAH. normal sexual developmen t

In some cases, infants with biotinidase deficiency and some forms of congenital adrenal

hyperplasia are at risk of sudden death if not immediately treated, often before physicians are able

to make clinical diagnoses of their conditions. In

these situations, newborn screening can serve a

critical function—alerting physicians to the need

for treatment in infants who may not yet show

specific signs of their conditions. In general, however, little is known about the natural history of

either biotinidase deficiency or congenital adrenal hyperplasia. For example, it is not known how

many infants with biotinidase deficiency are at

risk of sudden death and how many have a less

severe form of the disease that does not require

treatment. Congenital adrenal hyperplasia takes

at least two forms, one requiring immediate lifesustaining treatment and another form that does

not require such treatment and may be diagnosed

clinically. Although some infants with biotinidase

deficiency and congenital adrenal hyperplasia can

certainly be helped by early diagnosis through

newborn screening, there is still not enough information available to judge whether screening

of all infants for either of these conditions is

desirable, and how the benefits of such screening

compare to the benefits from newborn screening

for other treatable conditions.

For sickle cell anemia and cystic fibrosis, treatment that will entirely prevent the major longterm disabilities characteristic of these disorders

does not exist, In the case of sickle cell anemia,

however, newborn screening may have an important intermediate goal. A certain percentage of infants with sickle cell anemia are at risk of overwhelming infection and sudden death in the first

few years of life. If their sickle cell disease is identified before infection occurs, affected infants can

be given prophylactic antibiotics that significantly

reduce the risk of infection and lower the overall

mortality rate from the disease in early life (198).

For patients who have passed this critical period,

there is no hard evidence that screening and diag-
96 ● Healthy Children: Investing in the Future

-.

nosis in the first few weeks of life leads to improved long-term survival. Nevertheless, some

observers think that the effectiveness of prophylactic antibiotics to prevent infection in infants

with presymptomatic cases of sickle cell anemia

is probably a sufficient reason to include testing

for sickle cell anemia in routine newborn screening.

The issues of the long-term value and cost-effectiveness of early diagnosis and treatment of sickle

cell anemia, however, remain to be resolved.

A similar situation exists with respect to newborn screening for cystic fibrosis. In recent years,

earlier and more intensive treatment following

clinical diagnosis of patients with cystic fibrosis

has contributed to a generally longer survival

among these individuals, who now live to early

adulthood rather than dying in early childhood

as patients did several decades ago. A variety of

clinical observations suggest that early awareness

of cystic fibrosis allows improvement in certain

aspects of patients’ physical condition—notably,

in their early nutritional status (472). The major

factor in long-term survival of patients with cystic fibrosis, however, is chronic lung disease;

whether newborn screening and even earlier treatment will improve survival above the current

average survival of 20 to 25 years is not known,

although a controlled clinical trial being conducted in Wisconsin may help resolve the issue.3

The next section of this chapter describes the

factors that influence the effectiveness of newborn

screening. There are two distinct aspects of the

overall effectiveness of newborn screening in detecting and treating affected infants. One aspect

is the effectiveness of the screening test and the

‘The controlled clinical trial being conducted in the Wisconsin

Cystic Fibrosis Centers is seeking to evaluate the potential pulmonary benefits, as well as the potential psychological risks, of newborn screening for cystic fibrosis (166). One-half the newborn population of the State will be screened at random, and newborns

identified as having cystic fibrosis will be enrolled in a comprehensive evaluation and treatment protocol. At the end of 3.5 years,

infants identified as having cystic fibrosis by the newborn screening test will be compared with age-matched patients diagnosed

through conventional medical channels, and their health status will

be mon]tored ior at least another 3.5 years. Any differences in pulm{>nary status between the two groups at the end of this period may

then be assumed to have resulted from the age at which the children were first diagnosed. Where possible, a controlled clinical trial

such as this can be valuable in assessing the benefits and risks of

a particular screening test before it is adopted on a routine basis

in newborn screening programs.

overall screening process in detecting affected infants in need of treatment. This aspect includes

how well the screening program coordinates abnormal laboratory findings with confirmatory

diagnosis and initiation of adequate treatment.

Another aspect is the efficacy of available treatments. Without effective treatment available to

alter the natural course of the disease, early screening would be ineffective at best, and possibly even

harmful. The discussion below addresses mainly

the first aspect, but several issues pertaining to

the treatment of specific diseases are discussed in

appendix H and elsewhere in this chapter.

Using the best information available on the effectiveness and costs of screening for specific disorders, OTA performed a cost-effectiveness analysis of a basic strategy for newborn screening

compared to no screening and of six expanded

strategies compared to the basic strategy. The

basic strategy consists of a one-specimen testing

process to identify cases of PKU and congenital

hypothyroidism. The expanded strategies include

testing for additional selected congenital diseases

and more intensive testing for PKU and congenital hypothyroidism. All of the various screening

strategies involve combinations of tests for two

or more of the following five disorders: PKU, congenital hypothyroidism, homocystinuria, galactosemia, and MSUD.

Tests for biotinidase deficiency, sickle cell anemia, cystic fibrosis, and congenital adrenal hyperplasia are not included in the strategies considered

in the cost-effectiveness analysis. An increasing

number of newborn screening programs have begun pilot screening projects for biotinidase deficiency and sickle cell anemia, and a small number of such programs are beginning to screen for

congenital adrenal hyperplasia and cystic fibrosis. However, there is insufficient information on

the long-term costs and effects of screening for

these conditions to analyze the cost-effectiveness

of strategies involving tests for these disorders.

Nevertheless, this chapter does provide information on the costs of detecting these disorders in

ongoing screening programs.

The chapter also discusses the financing of newborn screening and treatment programs. It emphasizes, in particular, the recent changes in the

overall level of Federal support for such programs.
Chapter 5—Newborn

FACTORS AFFECTING THE EFFECTIVENESS

OF NEWBORN SCREENING

Screening for Congenital Disorders ● 9 7

.

As described in box 5-A, newborn screening

seeks to identify biochemical abnormalities that

suggest the presence of disease in affected but as

yet asymptomatic infants. Infants who test positive in the initial screening test can be evaluated

further to diagnose the specific disorder and to

determine the best mode of therapy. Since for

most of the disorders targeted by newborn screening, treatment must begin in the first 2 to 3 weeks

of life (as in PKU and congenital hypothyroidism)

or even the first few days of life (as in galactosemia, MSUD, and congenital adrenal hyperplasia),

there is a premium on identifying affected cases

early, rapidly, and unambiguously.

ity of the screening program to collect blood specimens from all infants and to perform the tests

properly and in time to initiate treatment. Potential errors in the overall screening process include

not collecting blood specimens as needed; losing

specimens in transit; collecting specimens too

early or too late; reporting errors; and lack of adequate followup testing. Thus, the organization

and management of newborn screening services,

the timing and number of newborn blood specimens, and laboratory performance have major

bearing on the effectiveness of newborn screening. Even without errors such as those just mentioned, however, there would still be upper limits

The effectiveness of newborn screening in iden- on the technical ability of a newborn screening

tifying affected infants depends in part on the abil- program to detect all affected infants, since none

Box 5-A.—Process of Newborn Screening and Treatment

The process of newborn screening involves collecting a few drops of blood from an infant’s heel onto

specially designed filter paper with accompanying information including the infant’s name, date of birth,

and other relevant data. The specimen is usually collected just prior to the infant’s discharge from the hospital nursery or, for nonhospital births, during the first week of life.

Once the blood spots have dried, the filter paper is sent to a screening laboratory where specimens

are analyzed using procedures and equipment designed to handle many samples simultaneously. (A mediumsized newborn screening program may screen 40,000 to 50,000 infants annually; larger programs, particularly those regional in scope, screen 100,000 to 150,000 specimens annually. ) The distinction between affected and normal infants is either qualitative (presence or absence of a protein, for example) or quantitative (greater or lesser concentration of a chemical in the blood), although the distinction is made within

certain bounds of sensitivity and specificity. 1 The test procedure used in newborn screening has to be sufficiently reliable and valid for use on a large-scale basis (280,281).

If the screening test result reveals an abnormality, the program staff notifies the family’s physician

or refers the family to a qualified specialist. The screening program may or may not be responsible for

coordinating diagnostic services or treatment for infants with abnormal screening results. Followup services typically involve long-term treatment and evaluation and are guided by various health professionals,

including pediatricians, geneticists, nutritionists, nurses, and social workers. The screening program may

develop specific protocols for the treatment of unusual or rare diseases (378). It is usually the responsibility

of the screening program to keep long-term records of the screening results and actions following identification of affected infants.

The initiation of timely treatment and provision of adequate followup requires close coordination among

the various components of the screening program: the hospital of birth, the screening laboratory, the infant’s family and physician, and specialists at an appropriate diagnostic and treatment center who oversee

long-term treatment and monitoring. Therapy for diseases detected through newborn screening usually continues throughout an individual’s lifetime.

‘Sen\lt, vlty i~ a measure Ot the accurac} (It a screen]ng or d]agnmtlc test In correctl> ldent]fylng thwe who have the disease In quest] on; spec]tlclt}

IS a measure of the accuracy of such a test In correctly ldent lfyng th(w m.ho do not hai.e the disea~e
98 . Healthy Children: Investing in the Future

of the tests have complete sensitivity (i.e., the ability to classify correctly all affected infants as affected). Therefore, this section focuses not only

on technical sensitivity of the tests used in newborn screening, but also on the organization and

delivery of screening services that affect the effectiveness of newborn screening in practice.

Percentage of Affected

Infants Detected

Data on the overall sensitivity and specificity

of the tests for PKU and congenital hypothyroidism

(two tests which have been in use for over 10

years) are not collected or evaluated on a national

basis. The accuracy of these newborn tests in identifying blood samples with abnormal levels of

phenylalanine or thyroxine, however, is generally considered to be very good. Estimates of the

sensitivity and specificity of the tests for PKU and

congenital hypothyroidism in practical use have

been reported by various individual newborn

screening programs, but the estimates vary, depending in part on the size of the program and

how the tests are conducted. Furthermore, biological variation among individuals with a given

condition makes it difficult to distinguish precisely

between normal and abnormal findings, and the

same result can be interpreted in different ways

in different laboratories. In the case of tests to detect PKU, for example, the sensitivity depends on

factors such as the cutoff point above which a

sample is considered to have an abnormal amount

of phenylalanine and also on the age of the infant when the blood sample was taken.

If there is limited information on the sensitivity of newborn screening tests for PKU and congenital hypothyroidism, there is even less information on the sensitivity of the newer tests for

other conditions such as biotinidase deficiency,

cystic fibrosis, and congenital adrenal hyperplasia.

Like missed cases of PKU and congenital hypothyroidism, missed cases of these other conditions do

not necessarily come to the attention of the appropriate State agency or to a central national office

such as the Centers for Disease Control (CDC).

Lacking accurate data on sensitivity in a technical context as well as a broader context, OTA

consulted with experts in newborn screening programs and in academic genetics and pediatrics departments to develop estimates and ranges for the

percentage of affected infants detected by five

newborn screening tests. Estimated incidence rates

for PKU, congenital hypothyroidism, galactosemia, MSUD, and homocystinuria, along with estimated percentages of affected infants found by

these tests on first and second specimens are

shown in table 5-3. The estimates in the table reflect these experts’ consensus regarding the technical sensitivity of the tests plus practical considerations in applying the tests to large populations.

In MSUD testing, for example, the sensitivity of

the test may generally be high, but MSUD is so

rapidly fatal that, in practice, the test may not

always be performed and reported in time to initiate effective treatment.

Organization and Management of

Newborn Screening Services

Canada and the United States are the only developed countries offering newborn screening that

do not have a national screening program.4 In the

absence of a national newborn screening program

or national set of minimum standards, each State

has taken a slightly different approach to providing screening services. A few States have joined

with neighboring States to form regional programs that together account for the screening of

about 20 percent of births each year (279). Currently, there are three regional programs in the

United States:

1.

2.

3.

the New England regional program (covering Massachusetts, Rhode Island, Connecticut, Maine, and New Hampshire);

the Rocky Mountain States regional program

(covering Colorado, Arizona, and Wyoming);

and

the Pacific Northwest regional program

(covering Oregon, Idaho, Nevada, and

Alaska).

Although each of these regional programs has a

central screening laboratory and coordinating center clinical followup services are provided at local medical centers.

‘Approximately 30 countries outside the United States also offer

newborn screening services for various diseases (640a).
Chapter 5—Newborn Screening for Congenital Disorders ● 9 9

Table 5-3.— Percentage of Affected Infants Detected by Newborn Screening for Five Congenital Disordersa

Percentage of affected cases found (sensitivity)

Incidence of the disorder On first screening test On second screening test

Disorder Median Range Median Range Median Range

Phenylketonuria (PKU) 1 in 12,000 1 in 10,000 to 960/0 94-97% 99 ”/0 98-1 OOO

/o

1 in 15,000

Congenital hypothyroidism 1 in 3,500 1 in 3,000 to 93 ”/0 90-95 ”/0 99 ”/0 95-1 00 ”/0

(CH) 1 in 4,000

Galactosemia (GA) 1 in 62,000 1 in 40,000 to 850/o 80-900/o — —

1 in 80,000

Maple syrup urine disease 1 in 227,000 1 in 200,000 to 850/o 80-900/o — —

(MSUD) 1 in 300,000

Homocystinuria (HC) 1 in 150,000 1 in 100,000 to — . 80 0/0 75-850/o

1 in 300,000

%lTA sollclted the estimates presented In this table for use in the cost-effectiveness analwis of seven newborn screenincl Stratecves, which IS presented In this chap

ter See text for discussion of sources

SOURCE Off Ice of Technology Assessment, 1988

The majority of infants—about 71 percent—

are covered by newborn screening programs in

individual States. Most State newborn screening

programs do have a centralized screening laboratory, but only some (e.g., California) have an

organized program of services linking the laboratory with followup, treatment, and monitoring.

A few States, together accounting for about 9 percent of all births, operate without a central laboratory or a centrally organized program. These

States (e.g., Nebraska, South Dakota, Oklahoma,

and Hawaii) rely on an informal network of individual families, physicians, and a combination

of public and private laboratories to provide

screening and followup.

Because of the particular requirements and difficulties inherent in newborn screening, it seems

reasonable that a coordinated system of services

would provide the optimal organization for ensuring that all infants are satisfactorily screened

and that affected infants are followed up and

treated. In a 1975 publication, the National Academy of Sciences recommended the development

in the United States of regional screening programs based on an area’s birth rate rather than

its State boundaries, particularly in areas where

low population densities and low budgets would

restrict access to high-quality screening services

(442). Other sources have also recommended centralizing laboratories and coordinating various

components of screening programs (e.g., 31,53).

There is no ongoing system in place, however,

to assist States in implementing these recommendations and in developing coordinated screening

programs.

In some areas, the lack of a coordinated network of services may be reducing the overall effectiveness of newborn screening by putting infants at risk for not being screened or for not

receiving appropriate treatment. There are no national data on the number of infants at risk, however, because there is no central system for collecting comprehensive data with which to monitor

and compare the outcomes of newborn screening

in the State and regional programs. If a system

were to be established, several specific indicators

of effectiveness could be used to evaluate the performance of screening programs—e.g., the percentage of infants screened in a given area, the

time that elapses between the completion of the

screening tests and the initiation of treatment, and

the frequency of “errors” in the process (from collecting unsatisfactory specimens to actually failing to identify an affected child).

A recent study of errors in the process and analysis of newborn screening specimens in Oregon’s

program suggests that collecting and monitoring

such data on a national basis may be important

(647). Using data from a computer-based surveillance system designed to track individual infants

through the screening process and to monitor

screening practices of individual hospitals, birth

centers, and home deliveries, Tuerck and colleagues found that over one-half (58 percent) of
100 • Healthy Children: Investing in the Future

the 23,717 specimens collected in Oregon over a

recent 4-month period were submitted with one

or more screening practice “errors” (647). Any one

of these errors, if uncorrected, could have allowed

an affected child to go undetected and untreated

or could have caused a serious delay in diagnosis

and treatment. The five categories of errors, in

order of frequency were:

1.

2.

3.

4.

5.

A

28.2 percent of the specimens had omissions

of demographic information on the screening card (e. g., no name or unreadable information);

27.7 percent of the specimens were taken at

suboptimal times (e. g., the first one taken

before 24 hours of age and the second taken

after 14 days of age);

22.9 percent were not retested as required by

the State of Oregon;

16.2 percent of the specimens took longer

than 5 days to go from the birthing facility

to the screening laboratory; and

0.6 percent were unsatisfactory for testing,

usually caused by poor techniques for blood

collection.

retrospective study that surveyed screening

laboratory directors in 49 States identified 76

missed cases of PKU and congenital hypothyroidism that occurred during the history of the programs (279). The primary causes identified were

the following: laboratory procedures (45 percent);

errors in followup (16 percent); specimen collection errors, mostly the lack of an initial specimen

(14 percent); false negative results’ due to biologic

variation in disease expression (11 percent); and

unidentified causes (14 percent). Although the investigators reported that 76 missed cases was

probably an underestimate of the actual number

of missed cases, these data do give a rough indication of the types of errors (mostly “human”

errors) that allow affected infants to escape detection and treatment.

Timing and Number of Newborn

Blood Specimens

Optimal Timing of Blood Specimen Collection

The optimal time for collecting a blood specimen for newborn screening during the newborn

hospitalization’ depends on the characteristics of

the disorders for which infants will be screened.

The optimal time for collection is the earliest point

at which the biochemical markers for the targeted

disorders are present in the blood in high enough

or low enough amounts (depending on the disorder) to identify the disorders accurately. As affected infants progress, these markers become

more and more unmistakable, but irreversible

symptoms may begin to occur. In PKU screening, for example, testing too early (e.g., in the first

day of life) could miss an infant with the disease

for biological reasons, and testing too late (e.g.,

in the second or third week of life) could lead to

starting treatment too late to avert the severe longterm consequences of the disease.

Another consideration is that when tests for

several disorders are performed on the same sample, the optimal times for the different assays may

not overlap sufficiently to permit equally reliable results for each test. While testing at 3 to 5

days of life is usually considered optimal for PKU

screening, testing for homocystinuria, for example, using the same blood sample would detect

only about one-half of infants with homocystinuria; testing at 3 to 4 weeks, rather than in the

first week, is considered optimal for detecting

homocystinuria.

Number of Specimens

A single blood specimen collected from infants

before discharge from the hospital has generally

been considered sufficient in screening for PKU

‘The vast majority of U.S. infants are born in hospitals (712),

and the collection of blood specimens for newborn screening is a

routine procedure before infants are discharged. Births that occur

outside of hospitals are difficult to monitor, and although birth at5A false negative is an affected person lease incorrectly identified tendants are instructed to collect a specimen, enforcement is diffiby a test as not having the condition. cult, even if testing is mandatory.
Chapter 5—Newborn Screening for Congenital Disorders . 101

and congenital hypothyroidism. 7 Two recent developments have cast doubt, however, on the adequacy of a single specimen to test for PKU and

congenital hypothyroidism. These developments,

discussed below, have led some people to advocate the collection of a second blood specimen

during the second or third weeks of an infant’s

life. A second specimen can be collected from an

infant either during a well-child visit to a physician or nurse practitioner or during an outpatient

visit to a hospital. In Oregon, the collection of

a second blood specimen is mandatory at the time

of the first well-child visit between 2 and 6 weeks

of age (325) and is achieved in about 85 to 90 percent of infants (81).

PKU Testing.—One development that casts

doubt on the adequacy of a single specimen for

newborn screening for PKU testing is the trend

toward discharging an increasing percentage of

newborns from the hospital before the optimal

time for testing for PKU at about 3 to 5 days of

age. In 1985, an estimated 41.4 percent of infants

born in U.S. hospitals were discharged from the

hospital nursery before the third day of life—an

increase from 30.9 percent of infants in 1980 (707).

The increasing percentage of blood specimens being taken in the first 1 or 2 days of life may increase the probability that tests on infants with

PKU will be falsely negative, possibly causing

some infants with PKU to escape detection and

treatment. ’ Since serum phenylalanine levels in

PKU cases rise steadily over the first few days of

‘In some instances, second specimens have to be collected because

of problems with the first specimen, but such instances are fairly

uncommon. Reasons to collect a second specimen include failure of a lab to receive a first specimen, not enough blood present

in the first specimen to complete the tests, incomplete demographic

information on the specimen card (missing age of the infant when

the sample was taken, illegible name, etc.), or a filter paper that

contains anything other than the infant’s blood.

‘OTA is unaware of any cases of PKU that have been documented

as being missed for this reason, but the theoretical probability that

cases of PKU could be missed because of early hospital discharge

of newborns is an important issue for newborn screening programs.

Screening programs may be legally responsible for detecting all affected infants in the region covered–a fact that provides additional

incentive to do as much as possible to identify all affected cases,

Although routinely collecting a second specimen on all infants may

be one of the most comprehensive approaches to guard against

missed cases, this approach is certain to increase costs associated

with newborn screening. It would have the advantage, however,

of detecting diseases such as homocystinuria, which are not normally detectable in the first screening test.

life and the difference between phenylalanine

levels in normal and PKU infants increases with

each day of life, some analysts suggested that up

to 16 percent of infants with PKU could be missed

for biologic reasons if tests were performed on

blood specimens taken before the infant was 24

hours old (282,283,409).

So far, empirical data have not borne out these

analysts’ predictions (377,423,576). Although the

available data are from clinics and institutions that

care for children with mental disabilities and may

underestimate the number of missed cases of PKU

(because once a child is mentally retarded, the

underlying cause may not be determined and reported as PKU), in practice, phenylalanine levels

in PKU infants are usually higher than in normal

infants even on the first day of life, and various

technical adjustments can be made to raise the sensitivity of the assays used to identify PKU in first

day samples (409,574). Thus, it does not appear

likely that the collection of blood samples around

24 hours of age would result in missed cases of

classic PKU as a result of low phenylalanine levels

in the blood on the first day. Even so, however,

an infant with PKU might be missed by the screening system for other reasons (e.g., because the infant was not being screened at all, or because the

infant’s first blood specimen was lost in transit).

One way of gaining assurance that infants with

PKU are not being missed on the first test is to

obtain a second blood specimen for retesting all

infants. Experience in the Texas and Oregon screening programs, which perform a second screen on

a majority of infants, suggests that the probability of missing PKU infants on the first test is low,

because no additional cases of PKU have been found

via tests on second blood specimens (81,640).

Congenital Hypothyroidism Testing.—A development that casts doubt on the adequacy of a single specimen in newborn screening for hypothyroidism is preliminary evidence that an additional

5 to 10 percent of infants with congenital hypothyroidism can be detected by second testing at

3 to 4 weeks of age—these are affected infants

with no biochemical signs of congenital hypothyroidism on the first specimen taken during the first

week of life (359,376); the severity of the hypothy-
102 • Healthy Children: Investing in the Future

roidism in the additional infants compared to the

infants identified in the first test is still unknown.

Several screening programs (e.g., Texas) routinely

use a second specimen for hypothyroidism testing.

Laboratory Performance: Quality

Assurance and Proficiency

Testing Programs

The consequences of failing to identify an abnormal blood specimen, leading to a failure to diagnose and treat, can be catastrophic for infants

with diseases such as PKU, congenital hypothyroidism, galactosemia, MSUD, biotinidase deficiency, and congenital adrenal hyperplasia. Furthermore, missed cases of PKU and congenital

hypothyroidism have led to lawsuits against the

State in which the infant was screened, the attending physician, the hospital of birth, or the Federal Government (in the case of a military birth)

(279). 9 The reasons for missed cases are diverse

and involve errors in many stages of the process,

from specimen collection, to laboratory analysis,

to followup and treatment (279).

One step newborn screening laboratories can

take to improve the reliability of their laboratory

results and to maintain high-quality technical performance is to participate in proficiency testing

or broader external quality assurance programs.

Proficiency testing provides an opportunity for

a laboratory to have an external check on its ability to identify abnormal specimens and recognize

normal specimens. Such a check is especially important in low-volume laboratories in testing their

laboratory ability to identify particularly rare conditions. By participating in proficiency testing on

a regular basis, a laboratory can judge and compare its methods and test kits against others for

precision and accuracy. In a broader sense, quality

assurance programs, which include proficiency

testing, facilitate the identification of laboratories

‘Thus far, 20 to 25 lawsuits involving missed cases of PKU or

congenital hypothyroidism have been brought to trial in the United

States. Some of these cases have resulted in financial settlements

as high as $4 million (601). Each of these cases involved brain damage that could have been avoided by treatment if the children had

been identified accurately in newborn screening. Settlements in such

cases typically cover the cost of caring for a mentally retarded child,

the economic value of the child’s lost potential earnings throughout his lifetime, and may also include financial compensation for

conscious pain and suffering (601),

that are encountering technical problems and,

through the combined experience of many participating laboratories, help to improve laboratory performance.

The major effort in external quality assurance

for newborn screening programs in the United

States has been that undertaken by CDC. To assist States in developing and maintaining high

levels of accuracy and precision in their newborn

screening programs, CDC operates two services:

1. a quality assurance program designed for

newborn screening programs (called the

“Standardization Program to Improve Laboratory Screening for Hypothyroidism,

Phenylketonuria, and Other Inborn Metabolic Disorders”), and as part of that,

2. a proficiency testing program for newborn

screening laboratories.10

The quality assurance program, which is jointly

funded by CDC and the Health Resources and

Services Administration, seeks to promote standards of good laboratory practice. Its objectives

are to ensure that newborn screening laboratories

accurately identify all cases of metabolic disorders

in time to initiate treatment. Laboratory participation in CDC’s quality assurance program for

newborn screening is voluntary.

One of the central features of the quality assurance program operated by CDC is the production and distribution of quality control materials

to laboratories for their internal use in maintaining the accuracy and precision of their screening

tests for PKU and congenital hypothyroidism.

This service is provided free of charge to State

laboratories. Quality control materials are also

provided to manufacturers to assist them in standardizing their equipment or testing kits (324).

CDC’s proficiency testing service for newborn

screening laboratories is one feature of an extensive proficiency testing program operated by CDC

pursuant to the Clinical Laboratory Improvement

Act of 1967 (Public Law 90-174,42 U.S.C.). Newborn screening laboratories that qualify under the

act’s provisions as “interstate laboratories” (e.g.,

10CDC discontinued its proficiency testing service for clinical laboratories in general in 1986, but it decided to retain these services

for newborn screening for PKU and congenital hypothyroidism testing (592).
Chapter 5—Newborn Screening for Congenital Disorders ● 1 0 3

the Pacific Northwest and the New England regional programs) are required to participate in the

program. Newborn screening laboratories that do

not accept specimens across State boundaries may

voluntarily participate in the CDC proficiency

testing service for newborn screening, but they

are not required to do so. Currently, almost all

State newborn screening programs use CDC’s

proficiency testing service.

Although many observers believe that CDC’s

quality assurance program is an essential component of the process of newborn screening (324),

no empirical studies have been done to measure

the impact of the program on the effectiveness of

newborn screening in detecting and treating affected infants. According to interim data from a

CDC analysis, however, the overall precision of

newborn screening as measured by proficiency

test results has improved in the past 5 years (64).

Thirty-three percent of all PKU proficiency testing results in the first quarter of 1981 were more

than 25 percent away from the consensus target

value; by the end of 1985, the figure had dropped

to 7.6 percent. This decrease in the range of values

obtained from the participating laboratories indicates a general improvement in reliability among

laboratories using different procedures (592).

COST= EFFECTIVENESS OF SEVEN

NEWBORN SCREENING STRATEGIES

Available studies of the cost-effectiveness of

various strategies for newborn screening have

compared the cost of laboratory detection of PKU

(47,85,471,621,729), congenital hypothyroidism

(46,368), or several metabolic disorders together

(123,650,727) with the averted costs to society

associated with caring for a mentally retarded

child. Most of the studies have omitted the costs

of specimen collection and long term followup,

and few of them applied a discount rate to future

costs of treatment or institutional care. None of

the studies has considered the costs and effectiveness of collecting a second specimen for additional

screening. All of these studies have suggested that

newborn screening for PKU, congenital hypothyroidism, and the rarer disorders result in a large

cost savings to society in general.

OTA performed a cost-effectiveness analysis of

the basic strategy for newborn screening—a onespecimen screening protocol for PKU and congenital hypothyroidism—compared to no screening

and of six alternative newborn screening strategies compared to the basic strategy for screening.

For the basic strategy, OTA ascertained the net

costs or savings to the U.S. health care system

and net effectiveness in identifying cases of PKU

and congenital hypothyroidism requiring treatment.

For the expanded strategies, OTA ascertained the

incremental costs associated with detecting additional cases of selected congenital diseases beyond

those detected in the basic strategy.

The seven newborn screening strategies considered in OTA’s cost-effectiveness analysis are

depicted in figure 5-1. These strategies vary with

respect to two key features—the number of specimens tested and the types of congenital disorders

tested for—but all of them involve various combinations of tests for two or more of the following five disorders: PKU, congenital hypothyroidism, homocystinuria, galactosemia, and MSUD.

The costs and effectiveness of tests for biotinidase

deficiency, sickle cell anemia, cystic fibrosis, and

congenital adrenal hyperplasia are not included

in the cost-effectiveness analysis, although OTA

obtained preliminary information on the costs of

adding tests for these four conditions to an ongoing screening program.

The basic screening strategy, Strategy I, involves the collection of a single blood specimen

to test for PKU and congenital hypothyroidism

and is compared in OTA’s analysis to no screening at all. Since all 50 States and the District of

Columbia offer newborn screening for PKU and

congenital hypothyroidism, Strategy I (screening

for PKU and congenital hypothyroidism using one

specimen) reflects the minimum situation common

to all U.S. newborn screening programs, and the
104 ● Healthy Children: Investing in the Future

Figure 5-1 .—Newborn Screening Strategies

Tests done on first specimen

Compared in OTA’s Cost-Effectiveness Analysis

Tests done on second specimen

Strategy I

Strategy II

Strategy Ill

I PKU+CH I

1

I PKU+CH t

. . . . . . . . . . . . . . . . . . . . . . . . . . . . > PKU+CH on all infants I

I

PKU+CH . . . . . . . . . . . . . . . . . . . . . . . . . . . . > PKU+CH on early discharge infants I

Strategy IV PKU+CH . . . . . . . . . . . . . . . . . . . . . . . . . . . . > CH only on all infants I

Strategy V PKU+CH I

. . . . . . . . . . . . . . . . . . . . . . . . . . . .> PKU+CH+HC on all infants

Strategy VI PKU+CH+GA+MSUD I

Strategy Vll I PKU+CH+GA+MSUD 1

---------------------------- > PKU+CH+HC on all infants

Abbrewatlons PKU - phenylketonur!a, CH - congenital hypothyroidism, GA

SOURCE Office of Technology Assessment. 1988

other strategies reflect additional screening options

some programs have taken. Accordingly, choices

by screening programs are likely to be made not

between some expanded screening strategy and

no screening at all, but between a one-specimen

strategy for PKU and congenital hypothyroidism

(Strategy I) and expanded one- or two-test strategies (e. g., Strategies 11 through VII). Therefore,

each of the other six screening strategies is compared to Strategy I rather than to no screening.

Strategies II, III, IV, and V follow an initial

blood specimen to test for PKU and congenital

hypothyroidism with a second specimen (the disorders tested for in the second specimen vary).

Strategy VI uses a single specimen to test for four

disorders (PKU, congenital hypothyroidism, galactosemia, and MSUD). Strategy VII, which is

the most comprehensive screening strategy of all,

uses a first specimen to test for four disorders

(PKU, congenital hypothyroidism, galactosemia,

and MSUD), then a second specimen to test for

three disorders (PKU, congenital hypothyroidism,

and homocystinuria).

For the basic strategy, OTA calculated net

health care costs or savings to society per 100,000

galactosemia: MSUD – maple syrup urine disease; HC = homocystinuria

infants screened. For comparisons of expanded

screening strategies with Strategy I, OTA calculated the net incremental cost per extra case detected. All costs in OTA’s analysis were expressed

in 1986 dollars. In calculating net health care

costs, OTA considered the costs of blood specimen collection, and laboratory detection, and

medical treatment as well as costs of foster care,

institutional care, and special education that

would be averted by early treatment of affected

infants. The value of avoiding premature death

from the targeted conditions was not quantified

in dollar terms. As a measure of effectiveness,

OTA used the number of cases of targeted disorders detected and treated per 100,000 infants

screened, and for the expanded strategies, the

number of extra cases detected by these approaches.

In all the analyses, this measure of effectiveness

is used as a reasonable, though imperfect, proxy

for the number of children whose lives would have

been greatly diminished in quality or whose

deaths would have occurred in childhood if their

disorders had not been detected by newborn

screening.

OTA’s cost-effectiveness analysis included both

a base case analysis and a sensitivity analysis. The
Chapter 5—Newborn Screening for Congenital Disorders ● 105

base case used what OTA deemed to be most

likely values for major variables. The sensitivity

analysis tested the sensitivity of the results to

changes in assumptions about these variables.

OTA estimated ranges for the major variables and

then grouped together “worst case” and “best case”

assumptions in the two parts of the sensitivity

analysis.

Components of OTA’s

Cost= Effectiveness Analysis

Basic information on the data used in OTA’s

analysis of seven newborn screening strategies is

presented below. For more detailed information

on the data and methods used in the analysis, see

appendix I.

Effectiveness Estimates

Estimates of the effectiveness of newborn screening for the five disorders were presented in the

previous section. In the base case, OTA used the

median incidence estimate and the median of the

estimated percentage of affected infants detected

shown in table 5-3. As noted earlier, these estimates represent a consensus of experts in the field

and are the best estimates available.

Cost Estimates

OTA’s estimate of the average costs of collecting a blood specimen from a newborn in the hospital was based on data from a time study at three

Wisconsin hospitals (47). OTA estimated the average cost of collecting a first specimen in the hospital to be $6.07. Unlike first specimens, the

majority of second specimens are likely to be collected outside a hospital, possibly during a wellchild visit at the physician’s office or clinic. In the

absence of data on the costs of specimen collection performed in a physician’s office, OTA assumed in the base case that the cost of collecting

a second blood specimen would be equal to the

cost of collecting the first.

The resource costs of detecting the five disorders

(PKU, congenital hypothyroidism, galactosemia,

MSUD, and homocystinuria) through newborn

screening were estimated for OTA’s analysis on

the basis of data provided by three State newborn

screening programs: Washington (609), Wisconsin (259), and Iowa (256). Since single-specimen

tests for PKU and congenital hypothyroidism are

available in all States, OTA combined costs for

PKU and congenital hypothyroidism tests into a

single estimate. In the base case analysis, OTA

used the mean of the range of the combined cost

of detecting these two disorders. The range was

from $3.88 to $8.16 per specimen, giving a mean

cost of $5.65. The mean of the range of the cost

of detecting galactosemia and MSUD was also

used in the base case. With a range from $1.25

to $1.60 per specimen, the mean detection cost

for galactosemia was $1.43; the range for MSUD

was $0.98 to $1.84, giving a mean detection cost

for MSUD of $1.41. Only one estimate for homocystinuria testing was available from the data provided by the three State programs, and that figure, $0.93 per specimen, was used in the base case.

OTA’s estimate of the costs of treatment for

PKU and congenital hypothyroidism was derived

from a study of PKU by Barden and colleagues

(47) and from a study of congenital hypothyroidism by Barden and Kessel (46) and inflated

to 1986 values: $107,712 undiscounted total treatment costs for PKU and $14,837 undiscounted total treatment costs for congenital hypothyroidism.

Barden and colleagues discounted PKU and congenital hypothyroidism treatment costs to present

value using a 7- and a 10-percent discount rate:

for PKU treatment, $53,855 at a 7-percent discount rate and $42,670 at a 10-percent rate; and

for congenital hypothyroidism treatment, $4,260

at a 7-percent discount rate and $3,588 at a 10-

percent rate. The discount rate applied to future

costs in OTA’s base case was 7 percent. The sensitivity analysis used both a 7- and a lo-percent

discount rate,

Data on treatment costs for galactosemia, MSUD,

and homocystinuria comparable to data on treatment costs for PKU and congenital hypothyroidism

are not available in the literature. Children with

galactosemia need no special supplemental diet—

just avoidance of foods containing galactose. In

OTA’s analysis, the costs of treatment for galactosemia were assumed to be close to the costs of

treatment for congenital hypothyroidism mentioned above (46), because both these disorders

include minor costs for medication and long-term

costs of clinical care and monitoring. Treatment
106 ● Healthy Children: Investing in the Future

—

costs for MSUD and homocystinuria in OTA’s

analysis were assumed to be approximated by the

costs of long-term PKU treatment (47), which includes costs for a special diet and also long-term

clinical care and monitoring.

In estimating the health care costs averted by

newborn screening and treatment for PKU, OTA’s

analysis focused on the averted costs of custodial

care and institutionalization and the averted costs

of special education. OTA’s estimate of the average net costs of residential care and special education for PKU was derived from Barden and colleagues (47) and inflated to 1986 values (see app.

I for more details).

In estimating the health care costs averted by

screening and treatment of congenital hypothyroidism, OTA focused similarly on averted costs

of custodial care and institutionalization associated with mental retardation in individuals with

untreated congenital hypothyroidism, with data

derived from Barden and colleagues (46). In OTA’s

analysis, the averted costs of custodial care and

institutionalization for individuals with untreated

congenital hypothyroidism were combined with

the averted costs of special education for untreated

individuals and discounted to present value.

The health care costs averted by screening and

treatment of galactosemia, MSUD, or homocystinuria are more difficult to quantify than those

averted by screening and treatment of PKU and

congenital hypothyroidism. No data are currently

available to estimate the cost of the progressive

deterioriation and almost certain death that occur in the majority of cases of galactosemia or

MSUD, or the long-term disabilities and risk of

premature death that occur in cases of homocystinuria. Consequently, although OTA’s analysis

does quantify the costs of screening and treatment

for these three conditions, it does not quantify the

costs averted by screening and treatment for these

conditions.

Findings of the Base Case Analysis

OTA’s base case analysis indicates that, in comparison to no screening, Strategy I results in a net

savings to the U.S. health care system of over $3.2

million per 100,000 infants screened. This strategy results in the detection of 34.6 cases of PKU

and congenital hypothyroidism per 100,000 infants screened. For each of the cases identified and

treated, net health care savings to society are approximately $93,000 (see table 5-4). The net health

care savings associated with Strategy I in comparison to no screening result from the detection

and treatment of infants with PKU or congenital

hypothyroidism who would have required custodial care or special education had their disorders

not been treated.

OTA’s base case analysis shows that each of

the expanded strategies for screening are both

more effective in detecting affected infants and

more costly than Strategy I.11 The number of additional cases of congenital disorders detected and

the incremental costs incurred (i. e., the reductions

in societal health care savings achieved by Strategy I ) by six expanded newborn screening strategies in comparison to Strategy I are shown in table 5-5.

Strategy II (a first specimen to test for PKU and

congenital hypothyroidism and then a second

specimen to test for PKU and congenital hypothyroidism on all infants) detects 36.6 affected cases

per 100,000 infants screened—or 2 cases more

than Strategy I. The net incremental health care

cost (i. e., loss of savings) per extra case detected

and treated via this approach compared to Strategy I is very high—about $466,000.

Strategy 111 (a first specimen to test for PKU

and congenital hypothyroidism and then a second specimen to test for these disorders only in

infants discharged early from the hospital whose

blood specimens were collected before 3 days of

age—41 percent of infants in 1985) results in the

detection of 1.3 more affected cases per 100,000

infants screened than Strategy I. The net incremental cost per extra case detected and treated

via this approach compared to Strategy I is approximately $253,000.

Strategy IV (a two-specimen strategy that involves a first specimen to test for PKU and congenital hypothyroidism and a second specimen to

1 L I t Shou]d be noted, however, that each of the expanded screening strategies would result in a net savings to the health care system

if they were compared to no screening at all, but in each case the

net savings would be lower than that obtained for the basic strategy.
Chapter 5—Newborn Screening for Congenital Disorders . 107

Table 5-4.—Effectiveness and Health Care Savings of Newborn Screening Strategy I

Compared to No Screening (1986 dollars)

Number of cases Net health care savings Net health care savings

detected per 100,000 per 100,000 per case detected

infants screened infants screened and treated

Strategy (1st test for PKU and CH

—

only) v. No screening . 34.6 $3,218,000 $93.000

Abbreviations: PKU = phenylketonuria: CH = congenital hypothyroidism

SOURCE Office of Technology Assessment 1988

Table 5-5.—lncrementai Effectiveness and Health Care Costs of Newborn

Screening Strategies Compared to Strategy I (1986 dollars)

Number of extra cases- Net incremental costs per

detected per 100,000

Strategies compared — infants screened

.

Strategy II (1st test for PKU and CH followed by 2nd test for PKU

and CH on all infants) v. Strategy I . . . . . . . . . . . . . . . . . . 2,0

Strategy III (1st test for PKU and CH followed by 2nd test for PKU

and CH on early discharge infants only) v. Strategy I . . . 1.3

Strategy IV (1st test for PKU and CH followed by 2nd test for CH

only on all infants) v. Strategy I . . . . . . . . . . . . . . . . . . . . . . 1,7

Strategy V (1st test for PKU and CH followed by 2nd test for PKU,

CH, and HC on all infants) v. Strategy I . . . . . . . . . . . . . 2,5

Strategy VI (1st test for PKU, CH, GA, and MSUD) v. Strategy I . . . . 18

Strategy Vll (1st test for PKU, CH, GA, and MSUD followed by 2nd

test for PKU, CH, and HC) v. Strategy I . . . . ... . . . . . . 4,3 —

Abbreviations: PKU phenylketonuria: CH = congenital hypothyroidism. HC

SOURCE Off Ice of Technology Assessment, 1988

test for congenital hypothyroidism only) results

in the detection of 36.3 affected cases, or 1.7 extra cases over Strategy I. The incremental cost of

each case detected and treated via this approach

compared to Strategy I is quite high—about

$432,000.

Strategy V, another two-specimen strategy, follows a first specimen for PKU and congenital

hypothyroidism with a second specimen for these

two disorders plus homocystinuria. Homocystinuria is the one condition of the five disorders

considered in this analysis that is not optimally

detected during the first week of life, so if a second specimen is being collected for PKU and congenital hypothyroidism, it might be advantageous

to test for homocystinuria on the second round.

Strategy V detects 2.5 cases more per 100,000 infants screened than Strategy I.

The net incremental cost of detecting and treating an extra case via Strategy V relative to Strategy I is fairly high—approximately $421,000. It

is important to note, however, that in calculathomocystinuria: GA -- galactosemia: MSUD

ing the incremental costs

extra case detected

and treated

$466,000

$253,000

$432,000

$421,000

$173,000

$317,000

maple syrup urine disease.

associated with Strategy V, OTA did not include the costs averted by

detecting and treating infants afflicted with homocystinuria (due to lack of available data); the inclusion of data on these averted costs, were such

data available, would probably reduce the incremental costs associated with this strategy.

Strategy VI (a single-specimen strategy that

adds tests for galactosemia and MSUD to the first

specimen used to test for PKU and congenital

hypothyroidism) detects 1.8 more cases per 100,000

infants screened than Strategy 1. The net incremental health care cost per extra case found and

treated by Strategy VI compared to Strategy I is

low compared to the other strategies—about

$173,000. The net incremental cost associated with

detecting additional cases via Strategy VI, in fact,

is lower than the incremental costs associated with

detecting additional cases via Strategies II, III, IV,

or V—an observation that suggests that detecting extra cases by adding tests to an initial specimen for PKU and congenital hypothyroidism is

less costly than detecting extra cases via a second
108 . Healthy Children: Investing in the Future

specimen. The cost of collecting additional specimens adds significantly to the incremental costs

of the two-specimen strategies OTA considered.

Strategy VII involves all of the newborn screening tests considered in this analysis: a first specimen to test for PKU, congenital hypothyroidism,

galactosemia, and MSUD, and a second specimen

to test all infants for PKU, congenital hypothyroidism, and homocystinuria. Strategy VII detects

almost 39 affected infants per 100,000 screened,

or 4.3 more cases than Strategy I. The net incremental cost of detecting and treating an extra case

via Strategy VII is rather high—approximately

$317,000.

Components and Findings of

the Sensitivity Analysis

To test the sensitivity of the results of OTA’s

base case analysis of newborn screening strategies to changes in estimates of major variables—

i.e., specimen collection costs, laboratory testing

costs, percentage of affected cases detected, and

discount rates—OTA examined the application

of possible ranges of estimates for these variables

in a sensitivity analysis. The estimates that were

most favorable to the overall cost-effectiveness

of newborn screening were combined in a “best”

case analysis, and the least favorable estimates

were combined into a “worst” case analysis. OTA

performed best case and worst case analyses only

for the four screening strategies with the most

differences among them: Strategies I, II, VI, and

VII.

Components of the Sensitivity Analysis

To vary the effectiveness of newborn screening, OTA varied the estimated percentage of affected infants detected by newborn screening

(which reflects ranges in reported incidence as well

as practical limitations on detection). The lowest

of the range of estimated percentage rates for particular disorders were used in the worst case; the

highest of the range of estimated percentage rates

were used in the best case (see table 5-3).

To vary the costs of specimen collection in the

sensitivity analysis, OTA used one approach to

vary costs for the two one-specimen screening

strategies (Strategies I and VI) and a different approach to vary them for the two two-specimen

strategies (Strategies II and VII). For the onespecimen strategies (I and VI), the cost of specimen collection used in the base case was varied

by 50 percent: 50-percent higher (worst case) and

50-percent lower (best case). For the two-specimen

strategies (II and VII), the cost of the first specimen collection was retained from the base case

analysis, but the cost of the second specimen collection was varied: in the worst case, the cost of

second specimen collection was assumed to be the

same as collecting the first specimen; in the best

case, it was assumed to be 25-percent lower.

To vary screening and treatment costs and discount rates, OTA used the same approach for all

four strategies being compared:

Newborn screening and treatment costs: The

lowest estimate derived from data provided

by one of the three State newborn screening

programs was used in the best case; the highest estimate of the three was used in the worst

case (see app. I).

Discount rate applied to future costs: A 7-

percent discount rate was applied to future

costs in the best case; a 10-percent discount

rate was used in the worst case. 12

Together, all these changes in assumptions alter

the expected number of cases detected per 100,000

infants screened and the costs of detection, treatment, and untreated disease. For an example of

the calculation OTA used to arrive at an estimate

of the overall costs or savings achieved by screening, see appendix I.

Findings of the Sensitivity Analysis

In the base case analysis, the net savings to the

health care system associated with Strategy I (a

single specimen for PKU and congenital hypothyroidism) compared to no screening was about $3.2

million per 100,000 infants screened. As shown

in table 5-6, net savings from Strategy I compared

to no screening remain positive over the entire

“In general, costs that occur in the future are reduced more when

a higher discount rate is used. Since averted costs of untreated disease are much greater than costs of preventive treatment, the use

of a higher discount rate is appropriate for the worst case analysis

since it lowers the averted costs.
Chapter 5—Newborn Screening for Congenital Disorders ● 1 0 9

range of assumptions tested, though they are as

high as $4.5 million per 100,000 infants screened

in the best case and as low as $626,000 per 100,000

infants screened in the worst case. Whereas 34.6

cases were detected per 100,000 infants screened

by Strategy I in the base case, 41.3 cases are detected in the best case and only 28.8 are detected

in the worst case.

Table 5-7 shows the incremental cost per extra

case detected by Strategies II, VI, and VII, each

compared to Strategy I. For Strategy VI (a single

test strategy for PKU, congenital hypothyroidism,

galactosemia, and MSUD), the sensitivity analysis shows that the incremental cost per each extra case detected by Strategy VI varies from

$277,000 in the worst case and $85,000 in the best

case, compared to $173,000 in the base case

analysis.

Strategies II and VII are both two-specimen testing strategies. For Strategy II (a first test for PKU

and congenital hypothyroidism followed by a second test for PKU and congenital hypothyroidism

on all infants), the incremental costs per extra case

detected compared to Strategy I are about $620,000

in the worst case and $453,000 in the best case

(see table 5-7), compared to $466,000 in the base

case analysis.

In Strategy VII (a first test for PKU, congenital hypothyroidism, galactosemia, and MSUD,

followed by a second test for PKU, congenital

hypothyroidism, and homocystinuria), the sensitivity analysis shows incremental costs per extra case found by Strategy VII compared to Strategy I are about $474,000 in the worst case and

$218,000 in the best case, whereas the base case

analysis estimated incremental costs of $317,000

per extra case detected and treated.

The results of the sensitivity analysis represent

extremes in the range of possible results, and it

is unlikely that all the worst factors (or best factors) would occur together in a single situation.

The sensitivity analysis shows, however, that the

incremental costs of detecting additional infants

with congenital disease are still somewhat high

even under the most favorable situations, and can

become substantially higher under the worst situations. It is worth noting, however, that under

the best case assumptions, the cost of Strategy VI,

the cost of detecting an extra case in an expanded

one-specimen strategy to test for two additional

disorders, is low relative to the costs of many therapies currently considered standard medical procedure. The $85,000 needed to detect an extra case

of galactosemia or MSUD in Strategy VI (and

with the best case assumptions) would buy an entire lifetime for a child with one of these disorders,

compared to, for example, expenditures (in 1986

dollars) of about $28,000 (162) to $40,000 (98) per

life-year gained from heart transplantation for

congestive heart failure, or $36,500 (530) per lifeyear gained from hemodialysis for end-stage renal disease.

Conclusions

In OTA’s calculations, the costs of specimen

collection and screening are important components of cost. By reducing the numbers of laboratories and avoiding duplication of fixed costs and

highly trained personnel, costs of laboratory testing would probably be reduced. It follows that

centralization of laboratories could make a substantial difference in the overall cost-effectiveness

of newborn screening. Of the three State programs

that provided data, the highest unit screening cost

used in OTA’s analysis was derived from the State

program that had the lowest specimen volume,

despite total overall costs similar to those of the

other programs that provided data.

OTA’s base case analysis compared the costs

of screening by various expanded strategies with

the consequences of doing less screening. This

analysis showed that collecting additional specimens from a large portion of infants, whether to

detect some percentage of extra cases of PKU, congenital hypothyroidism, or homocystinuria, or as

a precautionary measure to guard against missed

cases, is undoubtedly a costly strategy.

Only about one-half of all States screen for

homocystinuria and MSUD, and about one-third

screen for galactosemia, even though screening

tests and treatment for these conditions have been

available for many years. The rarity of these conditions is probably the main reason for their comparative unpopularity among screening programs.

That rarity translates into high net costs of detecting each additional case, as reflected in OTA’s
Table 5-6.—Sensitivity Analysis: Net Health Care Savings

Base case

and Number of Cases Detected by Strategy I Compared to No Screening (1986 dollars)

Sensitivity analysts

Worst case Best case

Net health care Number of cases Net health care Number of cases Net health care Number of cases

savings per 100,000 detected per 100,000 savings per 100,000 detected per 100,000 savings per 100,000 detected per 100,000

Strategy Infants screened Infants screened infants screened Infants screened infants screened infants screened

Strategy I (1st test for PKU and CH ofiy)

v No screening $3,218,000 3 4 6 $626000 2 8 8 $4,562,000 41 3

Abbreviations PKU = phenylketonuria CH = congenital hypothyroldrsm

SOURCE Off Ice of Technology Assessment 1988

Table 5-7.—Sensitivity Analysis: Incremental Effectiveness and Health Care

Costs of Newborn Screening Strategies Compared to Strategy 1 (1986 dollars)

Sensitivity analysis

Base case Worst case Best case

Number of extra Net Incremental Number of extra

cases detected cost per extra cases detected

per 100,000 case detected per 100,000

Strategies compared Infants screened & treated infants screened

Strategy II (1st test for PKU and CH followed by

2d test for PKU and CH on all Infants)

v Strategy I 20 $466,000 1 6

Strategy VI (1st test for PKU, CH, GA, and

MSUD) v Strategy I 1 8 $173,000 13

Strategy VII (1st test for PKU, CH, GA, and

MSUD followed by 2d test for PKU, CH and

HC) v Strategy I 4.3 $317,000 31

Abbreviations PKU = phenylketonuria CH = congenital hypothyroidism HC = homocystlnuna GA = galactosemla MSUD = maple syrup urtne disease

SOURCE Off Ice of Technology Assessment 1988

Net Incremental Number of extra Net Incremental

cost per extra cases detected cost per extra

case detected per 100,000 case detected

& treated infants screened & treated

$620,000 20 $453.000

$277,000 29 $85.000

$474! 000 57 $218,000

I

I
Chapter 5—Newborn Screening for Congenital Disorders . 111

analysis. Whether it is worth $100,000 or more screening programs. Estimated net costs might be

to detect an additional case of one of the treata- quite different, however, if new tests for addible congenital disorders is, of course, a question tional disorders were considered. Combinations

that can only be answered in the context of larger of tests other than the ones considered in OTA’s

societal decisions. analysis could change both the net costs and savings resulting from newborn screening and the inOTA’s analysis incorporates the strategies that cremental costs of detecting extra cases of conhave been in use for many years in newborn genital disease.

COSTS OF LABORATORY TESTING FOR

FOUR ADDITIONAL DISORDERS

Four additional disorders not examined in OTA’s

cost-effectiveness analysis—biotinidase deficiency,

sickle cell anemia, cystic fibrosis, and congenital

adrenal hyperplasia—are being considered for

inclusion in an increasing number of newborn

screening programs. Screening for sickle cell anemia, in particular, is gaining widespread support

as a result of recent evidence linking early detection and treatment of the disease with reduced

mortality among infants with the disease in the

first few years of life.

Few evaluations of the sensitivity and specificity of the screening tests and of the long-term

value of early detection and treatment of biotinidase deficiency, congenital adrenal hyperplasia,

sickle cell anemia, and cystic fibrosis have been

conducted, so data on the long-term effectiveness

of screening for these four disorders are unavailable. In the absence of more data on effectiveness,

estimates of the cost of screening and treatment,

not to mention costs averted by screening, would

be incomplete at best. For that reason, OTA did

not evaluate tests for these disorders in its costeffectiveness analysis of newborn screening strategies. Since many newborn screening programs

are incorporating these tests, however, preliminary cost estimates of detection are presented in

this chapter. Cost estimates presented below are

limited by the lack of sources of data; since only

a few programs are screening for the disorders,

and fewer have available cost information, the

data below may not reflect representative additional costs of detecting these disorders.

OTA asked four State screening programs

(Maryland, Iowa, Washington, and Colorado) to

identify and value the resources needed to test for

the four additional disorders using the same blood

specimens collected for PKU and congenital hypothyroidism (216,252,255,609). On the assumption

that the tests for the four disorders would be

added to the specimens for PKU and congenital

hypothyroidism, the costs reported show no costs

of additional specimen collection. Despite efforts

to standardize the estimates, there may be somewhat more variability among programs in the

methods used to derive costs of testing for the four

disorders discussed below than to derive costs of

testing for PKU, congenital hypothyroidism,

galactosemia, homocystinuria, and MSUD.

Biotinidase Deficiency

Data from Maryland’s newborn screening program suggest that testing for biotinidase deficiency

adds about $0.11 to the unit costs of laboratory

testing for PKU and congenital hypothyroidism

(216), With an approximate incidence rate for this

deficiency of 1 in 45,000 live births, screening for

biotinidase deficiency would yield approximately

2 to 3 infants with the disease per 100,000 screened.

Infants with biotinidase deficiency cannot recycle the B vitamin biotin, and treatment involves

the oral administration of biotin. Experience to

date suggests that such treatment saves severely

affected infants from sudden death and prevents

various kinds of necrologic damage in infants

with milder cases. How many infants with milder

cases could have been treated as effectively on the

basis of a later clinical diagnosis without screening is not known.
112 . Healthy Children: Investing in the Future

Sickle Cell Anemia

Data from Iowa’s newborn screening program

suggest that screening for sickle cell anemia would

add about $3.51 per infant screened to the cost

of PKU and congenital hypothyroidism screening (255). *3 In the general population, approximately 32 cases of sickle cell anemia would be expected in 100,000 infants screened (the incidence

among black newborns is about 1 in 500; 1984

census data indicate that approximately 16 percent of the total number of live births in the United

States are black) (712). ’4

Many of the infants with sickle cell anemia are

at risk for overwhelming infection and sudden

death in the first year or two of life. Newborn

screening, followed by the use of prophylactic antibiotics, may allow for a significant reduction of

this risk (198). Implications for later treatment of

infants diagnosed by newborn screening are

unknown.

Cystic Fibrosis

Screening for cystic fibrosis would yield approximately 40 affected infants per 100,000 infants

13Thi~ ~~timate may be high because of the size of and cost allocation methods employed by the Iowa program.

“AS noted earlier, the incidence of sickle cell anemia is higher

among blacks and in people of Mediterranean and Middle Eastern

descent. Screening for the disease in high-risk populations with a

higher incidence of the disease will obviously yield different costs

and effectiveness results than those yielded by screening in the genscreened at an estimated additional cost of $1.32

per specimen screened, according to data from the

Rocky Mountain States Regional Program (252).

The most immediate potential benefit to presymptomatic diagnosis of cystic fibrosis may be the

treatment of nutritional deficiencies which place

some affected infants at high risk for neonatal

death and impair the growth and development of

other infants with cystic fibrosis.

Screening for cystic fibrosis is currently being

performed on a pilot basis in a few States. It is

unknown whether early diagnosis and treatment

for cystic fibrosis improves long-term outcomes.

Congenital Adrenal Hyperplasia

It would cost an additional $1.50 per infant

screened to include testing for congenital adrenal

hyperplasia in an ongoing screening program,

according to data derived from the Washington

State program (609). Screening for congenital

adrenal hyperplasia would detect approximately

4 infants with the disease in 100,000 infants

screened. Approximately half of the afflicted infants would have been at high risk for sudden

death due to salt-wasting crises. Screening and

early treatment can prevent such neonatal deaths.

Infants with congenital adrenal hyperplasia who

are not at risk for salt-wasting can benefit from

accurate early diagnosis and treatment by receiving hormone therapy, possibly averting abnormal gender orientation and reproductive problems

eral population.

FINANCING

SCREENING

later in

AND REIMBURSEMENT FOR

AND TREATMENT

life.

NEWBORN

State newborn screening and treatment pro- State funds spent on maternal and child health

grams are funded by a combination of Fed&al,

State, and private sources. Since the passage of

the Omnibus Budget Reconciliation Act of 1981

(OBRA-81), (Public Law 97-35) establishing the

Maternal and Child Health (MCH) block grant

under Title V of the Social Security Act, Federal

funds for newborn screening have been included

in the MCH block grants.15 For every $0.75 of

ISFor more information on the MCH block grant program, see

chs. 3 and 6,

services, $1.00 of Federal funds is contributed. The

total authorization for the MCH block grants was

set at $373 million under OBRA-81. MCH block

grant funds were appropriated in two parts: 85

percent to be transferred directly to the States,

and 15 percent to be set aside for special projects

(in a Federal program entitled “Special Projects

of Regional and National Significance”). Funding

for certain genetic services was specified under the

special projects portion of the budget, but the
Chapter 5—Newborn Screening for Congenital Disorders ● 113

States could also use the general block grant funds

to support their newborn screening programs

(182),

The Deficit Reduction Act of 1984 (Public Law

98-369) raised the authorization for MCH block

grants to $478 million. For fiscal year 1987, the

Omnibus Reconciliation Act of 1986 (OBRA-86),

(Public Law 99-509) increased the authorization

for the MCH block grant to $553 million. That

act designated a percentage of the additional funds

authorized for the MCH block grants ($75 million in fiscal year 1987) to be used for newborn

screening for “sickle cell anemia and other genetic

disorders. ” The percentage was set at 7 percent

in fiscal year 1987 (or $5.25 million), 8 percent

in fiscal year 1988, and 9 percent in fiscal year

1989. If these funds for screening are appropriated as outlined, newborn screening, particularly

for sickle cell anemia, could be expanded in many

State screening programs under the Division of

Maternal and Child Health’s general oversight

provisions.

An increasing number of State newborn screening programs are charging user fees for the tests

they perform. Currently, 12 States specify in their

enabling legislation that a charge may be levied,

and others specify the exact amount that may be

charged (32). Reported charges, which are not

necessarily related to actual costs, range from

about $3 to $2416 per infant screened in State and

private laboratories (32,562,592).

The costs to a family of newborn screening

services are usually reimbursable under private

insurance plans as well as various public programs, depending on the individual plan operating in the State. Under Medicaid, reimbursement

for newborn screening is generally included in

reimbursement for overall perinatal care. Newborn screening programs or hospitals may have

to absorb the cost of screening if the family is unable to pay or if funds cannot be collected from

the third party.

I ~The State ~~ith the $24 charge also includes the cost of followup

and initiation of treatment in this charge (345).

In contrast to the relatively small, one-time fee

for the screening test (if one is charged at all), the

costs of treatment are incurred over a long period

of time in each case. Treatment for PKU, for example, consists of an essential dietary product that

is initiated in the first weeks of the child’s life and

continues to be used through adolescence and, in

some cases, indefinitely. Total cost of the special

PKU formula over the first 20 years of a patient’s

life has been estimated at $58,270 (47), or about

$3,000 per year. Similar dietary regimens are used

to treat individuals with homocystinuria and

MSUD.

Such dietary treatment is not normally reimbursed as medication or medical treatment, so

standard health insurance may not cover the

costs. Various sources of third-party payment

aside from standard health insurance are available in general, but the availability of these sources

varies widely among States and even within

States. Some families may have access to programs that provide the diet for all patients regardless of ability to pay. In the long run, most families probably rely on a combination of different

sources and may bear the entire cost of the diet

during periods in which no reimbursement is

available. Some families may discontinue the diet.

In young children, however, going off the diet is

highly likely to cause mental retardation. In older

children, even brief gaps in maintenance of the

diet therapy may diminish performance and alter

the child’s demeanor (12). For women with PKU,

there is an additional problem. If women with

PKU have gone off the diet before or during their

childbearing years, it may be more difficult to ensure that they resume it before conception, especially if they are not aware of the significant risks

to their fetus if they are not on the diet.

A survey of sources of reimbursement for the

PKU diet showed that the State health agency was

the sole or major source of third-party funds for

PKU treatment in 54 out of 98 newborn screening programs surveyed, but that a variety of other

sources were also used, each contributing a minor

portion of the reimbursement: the Crippled Children’s Program; Medicaid; the Women, Infants,

and Children (WIC) program; military sources;

private health insurance; the patient’s family; the

treatment clinic; and the formula manufacturer
114 • Healthy Children: Investing in the Future

Photo credit: Association for Retarded Citizens of the United States

Kammy and Sheila McGrath, poster children for 1961-62,

are sisters who were born with PKU. Sheila is severely

retarded. Mental retardation was avoided in Kammy, her

younger sister, because newborn screening detected her

disorder and allowed the prompt initiation

of a special preventive diet.

CONCLUSIONS

Since newborn screening is organized at the

State level, there are in practice about as many

different strategies for screening as there are programs. OTA’s analysis examined the net health

care costs and effectiveness of the basic strategy

common to all newborn screening programs and

then calculated the incremental costs and effectiveness of six expanded strategies for screening

compared to that basic strategy. The basic strategy—screening all infants using one specimen for

PKU and congenital hypothyroidism—resulted in

net health care savings of about $3.2 million per

(570). In some cases, the WIC program covers the

cost of the diet for PKU women during their pregnancy, but not before or after pregnancy. PKU

formula is covered under Medicaid in some States

(e.g., California, Colorado, and Washington),

and is variably classified as a medical supply, a

special medical item, a drug, or as a component

of enteral or parenteral nutrition programs. In

Wisconsin (where Medicaid does not cover the

PKU formula), a $3 “surcharge” is added to newborn screening charges for all infants to cover the

cost of the formula and diet for those who need

them, which places the cost on users of the program (i.e., the childbearing population) rather

than general taxpayers (Wise. Assembly Bill 550,

Act 157, 1983).

In some of the smaller States, or in some States

without coordinated screening programs, the individual physician caring for the PKU child sometimes can become a key figure in obtaining reimbursement for the PKU diet. Moreover, differences

in medical opinion about the number of years that

a patient should remain on the diet can lead to

different levels of advocacy on the part of physicians in securing long-term and consistent funding for the diet. In some cases, then, access to these

sources of funding may be determined largely by

the degree to which the individual physician or

screening director becomes involved in the

process.

100,000 infants screened and in the identification

and treatment of about 34 infants with PKU and

congenital hypothyroidism per 100,000 infants

screened. These figures represent a net savings of

about $93,000 per case detected and treated. Under the best case and worst assumptions used in

OTA’s sensitivity analysis, the net savings per case

detected and treated would amount to at best,

$110,000, and at worst, $22,000.

While most State screening programs probably

started with PKU testing and later added congen-
Chapter 5—Newborn Screening for Congenital Disorders ● 115

ital hypothyroidism testing, many programs have

gradually expanded their activities over the last

10 years to include collection of second specimens

or testing for galactosemia, homocystinuria, and/

or MSUD. Each of the strategies involving a

single-specimen with additional tests or involving two specimens detects more cases of congenital disorders than does the single specimen with

tests for PKU and congenital hypothyroidism

alone, In choosing among the various expanded

strategies for detecting extra cases of congenital

disorders, however, newborn screening programs

have to take into account the incremental costs

that are incurred through these approaches. OTA’s

analysis found that the incremental costs of any

of the two-specimen strategies compared to the

basic one-specimen strategy were quite high, ranging from $253,000 to $466,000 per extra case

found and treated. The least costly strategy for

detecting extra cases beyond those found in a single specimen to test for PKU and congenital hypothyroidism involved the addition of extra tests

(i.e., for galactosemia and MSUD) onto the first

specimen.

Overall, the data presented in OTA’s analysis

suggest that the basic newborn screening strategy-i.e., screening for PKU and congenital hypothyroidism in a single specimen—is less costly

than no screening at all and that the six expanded

screening strategies OTA considered in its analysis incur substantial additional costs. Since all

State screening programs have at least adopted

the basic strategy for newborn screening, the potential net savings nationwide have been large:

testing for PKU and congenital hypothyroidism

using a single specimen from each infant results

in net savings to the U.S. health care sector of

about $120 million per year assuming that 3.7 million infants are screened in a given year. Many

States have expanded screening beyond this basic

strategy, however, and since these expanded strategies are costly, the actual savings to the health

care sector are somewhat diminished.

Regardless of the strategy chosen for a particular newborn screening program, aspects of the

organization and delivery of the services can have

a major impact on the costs and effectiveness of

screening. Foremost among them is laboratory

costs, which are directly influenced by the efficiency of the testing procedures. It is plausible that

centralization of laboratory facilities for all States

or multi-State regions could reduce the duplication of fixed costs, such as capital equipment, and

could make better use of highly trained personnel. In addition, decentralized laboratories are less

likely to encounter abnormal test results—a significant disadvantage in developing the expertise

necessary to correctly identify cases of very rare

diseases. At present, some States do not have centralized laboratories, although the trend in recent

years has been toward the consolidation of facilities for newborn screening into one laboratory

per State. For some States with small populations,

however, even one centralized laboratory may not

be the best use of resources and expertise; such

States should be encouraged to form regional laboratories with neighboring States, while maintaining their own followup and treatment facilities on

a local level.

Critical to the effectiveness of newborn screening are such tasks as ensuring the completeness

of screening and the followup of positive screening tests. The accomplishment of both tasks is

probably more difficult and less reliable in a

screening program that lacks a tightly coordinated

system of screening, followup, and treatment

services. Data on the frequency and types of errors that can occur are emerging in a few programs. It would be particularly useful, however,

to collect and compare data on the completeness

and accuracy of screening across all the States’

programs on an ongoing basis.

Newborn screening is currently expanding in

scope to include tests for diseases such as sickle

cell anemia, congenital adrenal hyperplasia, cystic fibrosis, and biotinidase deficiency, and tests

for these conditions are rapidly being incorporated

into routine screening practices. These diseases

have little in common, except that in some cases,

they can be life-threatening before appropriate

medical care can be obtained. In these cases, newborn screening can provide essential early warning and treatment. In other cases, the benefit of

earlier diagnosis and access to specialized treatment may be a demonstrable improvement in

prognosis and course of the disease. At present,

such tests appear promising, but reliable information to determine the overall value of newborn
116 Ž Healthy Children: Investing in the Future

screening for these four conditions compared to

the effectiveness of their diagnosis and treatment

through standard medical channels is still lacking. As data do become available, it would be useful to compare the incremental effectiveness and

costs of incorporating these tests into various newborn screening strategies, such as the ones considered in this chapter.

For the established screening tests, the OTA

analysis has shown that more screening, while

leading to additional cases detected, can be quite

costly, although some of this cost can be reduced

by modifying the screening protocols (e.g., performing the additional tests on the first specimen,

without obtaining a second specimen from each

infant). State screening programs should proceed

cautiously with screening for biotinidase deficiency, sickle cell anemia, cystic fibrosis, and congenital adrenal hyperplasia. Concurrently, the

Federal Government might put as a priority the

collection and evaluation of data that would allow careful analysis in future of costs as well as

effectiveness of widespread screening for these disorders.
Chapter 6

Well-Child Care
CONTENTS

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...............................119

Recommendations Regarding the Frequency and Content of Well-Child Care . ......120

Frequency and Timing of Periodic Well-Child Care Visits . .....................120

Immunization. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..........................122

Screening Tests.. . . . . . . . . . . . . . . . . . . . . . . . . . ........ . .......................124

Anticipatory Guidance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..................124

Effectiveness of Well-Child Care. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ................126

Effectiveness of Well-Child Care as a Whole. . . ...............................126

Effectiveness of Five Specific Components of Well-Child Care. . .................130

Cost-Effectiveness of Childhood Immunization . . . + . . . . . . . . . . . . . . ................133

Literature Review. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ........................133

Impact of Vaccine Costs on Estimates of Net Cost Savings . ....................134

Conclusions About the Cost-Effectiveness of Childhood Immunization ... ... ... ..135

Financing and Availability of Well-Child Care Services . .........................136

Private insurance Coverage of Well-Child Care Services . . . . . . . . . . ..............136

Medicaid Coverage of Well-Child Care for Eligible Poor Children . ..............136

Public Direct Subsidies for Well-Child Care . . . . . . . . . . . . . . . . . . ................137

Access to Well-Child Care: Children’s Immunization Status . . . . . . . . . . . . .........140

Conclusions . . . . . . . . . . . . . . . . . . . . . . . ........ . ...............................144

Tables

Table No. Page

6-1.

6-2*

6-3.

6-4.

6-5.

6-6.

6-7.

6-8.

6-9.

Recommendations Regarding the Number of Well-Child Care Visits . ..........121

Recommendations Regarding Schedules for Active Immunization

of Normal Infants and Children . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......123

Recommendations Regarding Physical and Developmental Evaluations

for Well-Child Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..................125

Recommendations Regarding the Performance of Specified Screening Tests

in Well-Child Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. ...126

Impact of Vaccine Prices on the Cost-Effectiveness of Pertussis Vaccine ... ... ..135

Percentage of School-Entry-Aged U.S. Children Immunized,

1980/81 to 1985/86. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..................142

Percentage of 2-Year-Old U.S. Children Immunized, 1979 and 1985 . ..........142

Percentage of 1-to 4-Year-0lds and 5- to 6-Year-Olds Immunized

by Race, 1985. . . . . . . . . . . . . . . . . . . . . . . . . . . . ...............................143

Percentage of 1-to 4-Year-Olds and 5- to 6-Year-Olds Immunized by Place of

Residence, 1985 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....................143
Chapter 6

Well-Child Care1

INTRODUCTION

“Well-child care” encompasses a variety of preventive health services offered by physicians or

other health professionals at defined points in a

child’s life (227). Beginning as early as the second

or third week after birth and extending into adulthood, well-child care services include physical examinations and other tests that screen for illness

or developmental problems, immunizations against

polio and other diseases, health education, and

parental guidance.

The most obvious objective of well-child care

is to prevent morbidity2 or premature death by

immunizing a child or identifying an illness early

enough to intervene with effective therapy, Other

goals that have been proposed for well-child care

include support and reassurance for families of

young children and the provision of a “medical

home” in the event that illness develops (103).

The extent to which these intermediate objectives ultimately affect children’s health status is

difficult to trace. Nevertheless, it is widely believed that a continuous relationship between the

patient and a single source of medical care has

beneficial effects (103,179), including greater patient satisfaction, improved adherence to medical regimens, and more effective and less costly

acute care when it is needed (103,179 ).3

The provision of well-child care and other medical services (e. g., acute and ill child care) at the

same site potentially enhances a child’s continuity of care. Conversely, access to a continuous

—. —

i Parts 0[ this chapter are based on a paper prepared under contract to OTA by Charles Homer, entitled “Evaluation of the Evidence on the Effectiveness of Well-Child Care for Children” (284).

‘In recent years, morbidity has increasingly come to include not

only physical illness but also any deviation from a child’s full physical, cognitive, emotional, and social health potential (247).

‘Evidence to support this contention is equivocal. Patient satisfaction and adherence to prescribed medical regimens appear to increase with greater continuity of care, whereas a significant effect

ot cent in uit y on health outcomes and costs has not been demonstrated. For a comprehensive review of the literature on continuity

of care, see S.S. Flint, “The Impact of Continuity of Care on the

Utilization and Cost of Pediatric Care in a Medicaid Population”

( 17Q 1.

source of medical care may increase the likelihood

that a child will get the full complement of wellchild care (10,67,68). Thus, it is difficult to untangle the effects of well-child care from the effects of improved continuity of care.

Well-child care services can be, and often are,

delivered in settings that are completely separate

from physician practices. School-based screening

programs and immunization clinics are examples

of such settings. The effectiveness of specific procedures may vary with the setting and system of

care in which they are provided. For example,

screening in schools may be less effective than

screening in physicians’ practices if the schools’

linkages with necessary followup medical care are

weak. On the other hand, not all physicians may

use the most effective screening techniques. The

evidence on the effectiveness of well-child care

should be interpreted in light of these potential

differences by setting. In any case, delivery of

well-child care in settings that are unconnected

with the delivery of other primary care services

does not promote continuity of care and whatever health benefits or satisfaction it confers.

This chapter summarizes a variety of professional recommendations on the content of wellchild care from birth through 11 years of age. It

also reviews the evidence on the effectiveness of

well-child care as a whole and of five specific components of well-child care. The five components

were selected to illustrate the kinds of evidence

available on the effectiveness of commonly recommended procedures and are not a comprehensive list of well-child care components. The chapter also examines evidence on the cost-effectiveness

of childhood immunizations, Most other aspects

of well-child care have not been scrutinized for

cost-effectiveness because of the difficulty of establishing their effectiveness. Finally, the chapter addresses issues in the financing and delivery

of these services to young children and their implications for children’s access to effective wellchild care.

119
120 • Healthy Children: Investing in the Future

Photo credit: Scottish Rite Children's Hospital

A well-child care visit includes a review of the child’s medical history, a physical assessment, a developmental and behavioral

assessment, immunization when necessary, and anticipatory guidance.

RECOMMENDATIONS REGARDING THE FREQUENCY

AND CONTENT OF WELL-CHILD CARE

A typical well-child care visit to a health care

provider takes approximately 10 to 12 minutes

(521). The American Academy of Pediatrics (AAP)

recommends that a well-child care visit include

the following components:

1. an initial or interval medical history,

2. a physical assessment,

3. a developmental and behavioral assessment,

and

4. anticipatory guidance (17).

At some well-child care visits, immunizations are

administered. Following the visit with the health

care provider, a number of specific screening

measures may be undertaken. These include such

things as vision screening and tuberculosis testing.

Several professional bodies in the United States

and selected other Western nations have made recommendations regarding the frequency and content of well-child care and immunizations. Their

recommendations are reviewed below.

Frequency and Timing of Periodic

Well= Child Care Visits

Recommendations concerning the frequency

and timing of well-child visits vary substantially

among Western nations, among States within the

United States, and even over time within any particular recommending organization. The specific

recommendations of a variety of groups—AAP,

the Canadian Task Force on the Periodic Health

Examination, the Canadian Pediatric Society,

and three British groups concerned with well-child

care—are outlined in table 6-1.4

In general, the various guidelines demonstrate

the following characteristics:

‘The British Pediatric Association Working Group is in the process of formulating its recommendations. Those presented here are

based on the judgment of the chairman and vice-chairman of that

group, These are their personal views and not those ot the British

Pediatric Association Wrorking Group.
Chapter 6—Well-Child Care • 121

Table 6-1.— Recommendations Regarding the Number of Well-Child Care Visits (for children 1 month to 11 years of age)

Number of well-child visits recommended by age of child

1-6 months 7-12 months 1-4 years 5-11 years

United States:

AA?, 1977a 

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 1 4 3

AAP, 1981b . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 2 5 4

AAP, 1985C ., . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 2 5 4

Canada:

Task Force on the Periodic Health Examination, 1979d. . . . . . 4 2 3 2

Canadian Pediatric Society, 1983e . . . . . . . . . . . . . . . . . . . . . . . 4 2 4 4

Great Britain:

Court Committee, 1976f . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 1 3 Not included

Royal College of General Practitioners/British Medical

Association, 1984g 

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 1 2 Not included

Chair and Vice Chair of Working Party on Developmental

Surveillance in Childhood, 1987h 

. . . . . . . . . . . . . . . . . . . . . . . 1 1 2 †

i Not included

acommlttee on Standards of Chfld Health Care, American Academy of Pediatrics, Sfarrdards of Child Healfh Care, 3rd ed. (Evanston, IL 1977)

bcommlttee on practice and Ambulatory Medicine, American Academy of Pediatrics, “Guidelines for Health Superv!slon of Ch!ldren and Youth, ” Information sheet,

Elk Grove V!llage, IL, 1981

cAmerlcan Academy of pedtatrlcs, Gu/de//nes for Hea/th Supervision (Elk Grove Village, IL: 1985).

dTas.k Force on the perlodlc Health Examtnatlon, Health Services and Health promotion Branch, Canadian Department of National Health and Welfare, The Perfod(c

Hea/th Exarn/nat/on, 1979 (Ottawa, ON Canadian Department of National Health and Welfare, 1979)

ecanadlan Paediatrlc S,oclety, ChI/d Hea/th Care Gu/de/irres (Ottawa, ON March 1983).

fBrltlsh Committee on Child Health SewIces (s D M Coufl, Chair), Fit for the ~ufure (London, England Her Majesty’s Stationery Of flCe, 1976)

gRoyal College of General Practitioners and the General Medical Services Committee of the British Medical Association, Handbook of Preventive Care for F’re+xhoo/

Chddrerr (London, England. Royal College of General Practitioners, 1984)

hD Hall, Chair, and A Macfarlane, Vice Chatr, British paedlatric Association Working party on Developmental Surveillance In Childhood, personal COmmunlCatlon,

London/Oxford, England, February 1987 (These are the personal opln!ons of Drs. Hall and Macfarlane and do not reflect the final pos!tlon of the working party )

1 FIJI I physical eval uatlon recommended at age 31/2, home assessment by nurse of walking and language use at 2 also recommended; screen I ng tests for hearing and

vlslon recoin mended before school entrance, with physical exami nat!on on Iy if not performed at earl!er t!me

SOURCE Office of Technology Assessment, 1988

more visits recommended in the United States

than in Great Britain (although most likely

fewer visits in the United States than are commonly provided in other Western European

nations);

recommendations for a more focused physical examination than in the past;

increased concern with identifying behavioral

and developmental problems, coupled recently, especially in Great Britain, with increased recognition of the difficulties in reliably and validly identifying such problems;

and

a lack of consensus, especially apparent among

the States, concerning the appropriate populations for screening procedures, the optimal

age for the administration of such procedures, and the frequency of their use.

Several caveats should be kept in mind when

making comparisons between recommended American and British schedules. Infants and children

in the United Kingdom do not routinely receive

immunizations from their physician; the British

schedules, therefore, do not include immunization visits. In England, from the time of the creation of the National Health Service until the mid1970s, preventive child care services were provided separately from other medical services.

Since the mid-1970s, however, there has been

more emphasis on the provision of well-child care

and other medical care in a common setting (e.g.,

a general practitioner’s office).

In comparing recommendations within the North

American continent, one must consider the dramatically differing perspectives of the recommending bodies. In the United States, for example, the

expenses of Medicaid’s Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program

are partly borne by the States. Thus, EPSDT recommendations for frequency of visits and mandated screening reflect not simply medical judgment but political and economic judgments of

what each State is willing to spend for child health

services for the poor. 5 In recent years, the number of EPSDT screening visits recommended for

children from 1 month to 11 years of age has

5See p, 136 for a description of Medicaid’s EPSDT program.
122 . Healthy Children: Investing in the Future

ranged from 7 visits in Alaska to as many as 18

visits in Indiana and West Virginia (284).

Whereas State EPSDT administrators may have

a tendency to restrict services, AAP is likely to

be expansive. Though primarily seeking to advance the health of children, AAP also represents

the professional needs of its pediatrician members.

AAP has relied on expert judgment to formulate

its recommendations. It admits that its recommended schedule is rather arbitrary in nature but

contends that the recommendations constitute a

minimum desirable standard for normal children.

Nevertheless, AAP’s recommendations have stirred

controversy even within the pediatric community

(275).

The Canadian Task Force on the Periodic Health

Examination represents an entirely different perspective on the provision of preventive care. This

body, which included representatives from a variety of disciplines, was charged with making recommendations for periodic health examination by

the Deputy Ministers of Health of Canada. The

only recommended child health interventions for

children beyond the neonatal period that the task

force considered to have good evidence to support inclusion in well-child care visits were immunizations and dental examinations. Other recommended interventions, including anticipatory

guidance and developmental evaluation, were

considered to be backed by poor evidence in support of their inclusion in a periodic health examination, although they might be recommended on

other grounds (89).

The recommendations of the Canadian Pediatric Society were strongly influenced by the AAP

recommendations (402); they were also influenced

by the recommendations of the Canadian Task

Force on the Periodic Health Examination.

The existence of wide variations in recommended

well-child services, although understandable in

light of the differing health care systems and varied organizational perspectives, nonetheless reflects the lack of good evidence supporting any

one program of care over another.

Immunization

Immunization is perhaps the most fundamental component of well-child care. AAP and other

groups recommend that children in the United States

be routinely vaccinated against eight diseases:

●

●

●

●

●

●

●

●

polio,

diphtheria,

tetanus,

pertussis (whooping cough),

measles,

mumps,

rubella (German measles), and

Haemophilus influenzae b (Hib).

Polio vaccinations are administered by an oral

vaccine that is commonly referred to as “OPV”

(oral polio vaccine). Diphtheria, tetanus, and pertussis vaccinations are usually administered in one

shot known as “DTP,” and measles, mumps, and

rubella vaccinations are similarly administered in

a shot known as “MMR.” The new Hib vaccine

is a polysaccharide vaccine for the prevention of

Hib infection, the leading cause of bacterial meningitis. It has been licensed since April 1985 (109).

A varicella (chickenpox) vaccine maybe licensed

for use within the next year (287).

Table 6-2 charts the schedules for active immunization of normal infants and children recommended by various U. S., Canadian, and British

sources. Immunization schedules are recommended in the United States by the three groups:

● the Immunization Practices Advisory Committee (ACIP) of the U.S. Public Health Service (690);

● the Committee on Infectious Diseases of AAP

(17); and

● the Commission on Public Health and Scientific Affairs of the American Academy of

Family Physicians (14). ’

Until September 1986, when ACIP announced

a slight change in its schedule (discussed below),

all three U.S. groups recommended identical

childhood immunization schedules. The schedule

recommended by the Canadian National Advisory Committee on Immunization was identical

to that of the United States prior to 1986, but the

‘A fourth U.S. body, the U.S. Preventive Services Task Force recently published its recommendations for immunization, but did not

recommend specific schedules. It found that “there is good evidence

to support recommendation” of childhood immunizations for

poliomyelitis, DTP, MMR, and Hib (358).
Chapter 6—Well-Child Care ● 123

Table 6-2.— Recommendations Regarding Schedules for Active Immunization of Normal Infants and Children

Recommended schedule by type of vaccine

United States:

ACIP, 1986a

AAP, 1985b

AAFP, 1987’

Canada:

Task Force on the Periodic

Health Examination,

1979d

National Advisory Committee

on Immunization, 1984e

Great Britain:

Joint Committee on

Vaccination and

Immunisation, 1984h

MMR OPV DTP Hib 

15 months 4 doses— 5 doses— 24 months

2, 4, and 15 months, 2, 4, 6, and 15 months,

and 4-6 years and 4-6 years

15 months 4 doses— 5 doses— 24 months

2, 4, and 18 months, 2, 4, 6, and 18 months,

and 4-6 years and 4-6 years

15 months 4 doses— 5 doses— 24 months

2, 4, and 15 or 18 2, 4, 6, and 15 or 18

months, and 4-6 months, and 4-6 years

years

12-15 months 5 doses— 5 doses—

2, 4, 6, and 18 2, 4, 6, and 18 months,

months, and 5-6 and 5-6 years

years

12 months 5 doses—

2, 4, 6f

, and 18 5 doses— 24 monthsg

months, and 4-6 2, 4, 6, and 18 months,

years and 4-6 years

Measles—at 1-2 years 4 doses— 4 doses— —

Rubella—all girls at 3, 41⁄2 to 5, 81⁄2 to 3, 41⁄2 to 5, 81⁄2 to 11

10-14 years 11 months, and at months, and at

school entry school entry

Abbreviations ACIP = Immuntzatlon Practices Advisory Committee; MMR = measles, mumps, and rubella live virus vaccine, OPV = oral poliovirus live vaccine, DTP

= dlphtherla, tetanus, and pert ussls vaccine, H!b = F/aerrrophi/us Ir?fluenzae b polysaccharide vaccine; AAP = American Academy of Pediatrics, AAFP = American

Academy of Family Physlclans

%enters for Disease Control, Public Health Service, U S. Department of Health and Human Services, “New Recommended Schedule for Active Immunization of Normal

Infants and Children, ” Morb/dity and Morta/ity Week/y Reporf 35(37)577-579, Sept 19, 1986.

b Amerlcan Academy of Pedlatncs, Guide//nes for Hea/th Supervision (Elk Gove, IL: 1985)

cAmerlcan Academy of Family physicians, Recommended Immunization Schedu/e for Children brochure, revised January 1%7

dTask Force on the Periodic Health Exarnlnation, Health Services and Promotion Branch, Canadian Department Of National Health and Welfare, The Per(CJdlc Health

Exam/natfon, 1979 (Ottawa, ON Canadian Department of Health and Welfare, 1979)

eNatjonal Advi~o~ Commlss.lon on Immunization, A Guide to /immunization for Canadians (Ottawa, ON” M!nistry of SuPPIY and Services, 1984)

fThls dose may be omitted if Iwe (oral) pOliO vaccine is being used.

gAdded tO recornrnendafions on Mar 1, 1988, Canad/an Diseases Weekly Report, “Nat!onal Advisory Committee on Immunization {NACI) Statement on Haemophtfus

b Polysaccharide Vaccine,” Carradian Dseases Weekly Ffepoti 12(9) ”33.35, 1988

hJoint Committee on Vaccination and Immunisation for the Secretav of State for Social Sewices, the Secretary of State for Scotland and the Secretary Of State for

Wales, Welsh Office, Scottish Home and Health Department, Br!tlsh Department of Health and Social Sewices, /mmurr/sat/on Against Infectious D/s’ease (London,

England” Crown Copyright, 1984),

SOURCE Of ftce of Technology Assessment, 1988

British schedule differed (e.g., the British did not 3. an increase in the percentage of children who

recommend vaccination against mumps). are fully or partially immunized by 24 months

In September of 1986, ACIP announced a new of age (690).

recommended schedule calling for the simultane- After ACIP revised its schedule, the American

ous administration of MMR, DTP, and OPV to Academy of Family Physicians revised its recomall children at 15 months of age, rather than the mended schedule to allow the administration of

administration of MMR at 15 months and DTP DTP and OPV at 15 or 18 months of age (289).

and OPV at 18 months (690). ACIP cited three AAP did not change its recommended schedule,

potential benefits from the revised childhood im- but it will be noting that MMR, DTP, and OPV

munization schedule: can be administered simultaneously at 15 months

1. a decrease in the number of health-care pro- (19).

vider visits required for immunization dur- The Hib polysaccharide vaccine was added to

ing the second year of life, the list of childhood vaccines recommended by

2. an accompanying decrease in costs, and ACIP and AAP in 1985 (111). ACIP and AAP
124 ● Healthy Children: Investing in the Future

groups recommend Hib immunization of all children at 24 months of age and immunization of

older children up to 5 years of age who have not

already received the Hib vaccine at 24 months.

On the basis of clinical trials, ACIP has recommended Hib immunization of children in known

high-risk groups (e.g., immunocompromised children, children who attend day care) at 18 months

of age (684). AAP has not formally recommended

use of the vaccine in high-risk groups of 18 to 23

months of age (109).

As of February 1987, over 8 million doses of

the Hib polysaccharide vaccine had been distributed in the United States (108). The availability

and use of this vaccine is an important initial step

toward eliminating Hib infections. Each year Hib

accounts for an estimated 12,000 cases of bacterial

meningitis, primarily in children under 5 years of

age, and also accounts for 6,000 other invasive

Hib infections, such as pneumonia and epiglottitis (99). A 5-percent Hib mortality rate results in

approximately 900 deaths each year to children

under 5 years of age (684).

Because three-fourths of all Hib cases occur in

children under 24 months of age, the current Hib

polysaccharide vaccine is only an interim measure until a new Hib vaccine that is fully effective

for children under 24 months of age can be developed and licensed (684). A Hib polysaccharideprotein-conjugate vaccine, currently under development, may meet this need. Clinical studies in

infants have demonstrated that the conjugate vaccine appears to be safe and more effective than

the current Hib vaccine (109,161).

Screening Tests

Specific screening tests are often performed at

well-child visits.7 Table 6-3 summarizes the physical and developmental evaluations recommended

7

For a discussion of newborn screening, see ch. s and app. H.

by AAP and other professional groups for children 1 month to 11 years of age. A physical examination involves a series of diagnostic tests intended to detect a variety of medical conditions.

Some specific physical diagnostic procedures are

the Ortalani maneuver for identification of congenital dysplasia of the hip, forward bending for

detection of scoliosis, patch testing for discovery

of strabismus, and abdominal palpation for detection of tumors. The developmental screening

tool most widely used and recommended for use

by child health personnel is the Denver Developmental Screening Test (DDST) or one of its adaptations—the DDST-S or the Parents’ Developmental Questionnaire (96,184).

Table 6-4 lists the schedules recommended by

U. S., Canadian, and British groups for specific

hearing, vision, blood count, tuberculosis, and

urinalysis screening tests recommended in wellchild care.

Anticipatory Guidance

In the context of well-child care, anticipatory

guidance is the provision of education, information, or counseling in order to influence a parent’s or child’s behavior and thus favorably influence the child’s health. It includes everything

from traditional medical guidance (e.g., admonitions to avoid contact with children with certain communicable diseases) and nutritional advice to suggestions for appropriate management

of the child at specific developmental ages and information about behaviors (e.g., smoking and alcohol use) that adversely affect health.

Medical practitioners traditionally do not spend

much time in providing anticipatory guidance.

One study found that pediatricians spent 8.4 percent of the time of a well-child visit (only 50 to

60 seconds) providing anticipatory guidance; furthermore, the percentage diminished with increasing patient age (521).
.

Chapter 6—Well-Child Care ● 125

Table 6-3.—Recommendations Regarding Physical and Developmental Evaluations for Well-Child Care

(for children 1 month to 11 years of age)

Physical evaluation Developmental evaluation

United States:

AAP, 1981a

“At each visit, a complete physical

examination is essential”

AAP, 1985b Specific evaluations recommended at

each age. No mention of exam at

9, 12, and 15 month visits other

than growth measurements

Canada:

Task Force on the Periodic Health Specific physical exam measures

Examination, 1979C

recommended for most visits.

Complete exams not recommended

Canadian Pediatric Society, 1983d

Great Britain:

Court Committee, 1976e

Royal College of General

Practitioners/British Medical

Association, 1984f

Chair and Vice Chair of Working

Party on Developmental

Surveillance in Childhood, 1987g

Complete physical exam

recommended at each visit.

Specific items emphasized at

particular times

Full examination at 6 weeks and preschool; focused exams at other

times

Complete physical exam at first visit;

brief exam thereafter.

Specific points at each visit

Complete exam at 6 weeks, 8

months, and 31⁄2 years. Focused

measures at other times

“By history and appropriate physical

examination. If suspicious, by

specific objective developmental

testing . . .“

Detailed developmental and

behavioral guidelines provided at

each age, with note of specific

items for concern.

PDQ or DDST recommended most

visits before age 21⁄2; review

history of behavior problems ages

21⁄2, 4, 5, 10; assess parent-child

interaction 18 months to 21/2 years

Behavioral history each exam.

Language screening 7 times.

School performance evaluation

yearly beginning age 5.

Review development at age 7

months, 18 months, 21⁄2 and 41⁄2

years

Milestone-oriented developmental

exam included in each visit

Brief developmental assessment at 8

months. Home visit at 2 years with

brief gross motor and verbal

developmental evaluation. “Grave

doubts about the value of the

neurodevelopmental exam . . .“

Abbrevlatlons” AAP = American Academy of Pedlatrtcs; PDQ = Parents’ Developmental Questionnaire; DDST = Denver Developmental Screening Test

%ommlttee on Practice and Ambulatory Medictne, American Academy of Pediatrics, “Guidelines for Health Supervision of Children and Youth, ” information sheet,

Elk Grove Village, IL, 1981

bAmerlcan AcademY of pediatrics, Gu/de/lnes for Ffea/th Superv/smn (Elk Grove Villa9e, IL 1985)

C Ta sk Force on the periodic Health Examination, Health Sewices and promotion Branch, Canadian Depatiment of National Health and welfare, ~fre ~ef(odlc~eaith

Exarnlrratlorr, 1979 (Ottawa, ON: Canadian Deptarfment of National Health and Welfare, 1979).

dcanad,an pediatric Society C)IIM f+edth Care Guide//nes (Ottawa, ON: March 19@

eBrltlsh Committee on Child ‘Health Sewices (S. D M. COUrl, chair),Fit for the Future (London, England: Her Majesty’s Stationery office 1976)

fRoyal college of General practitioners and the General Medical se~lces Committee of the British Medical Assoclatlon, Handbook of ~reVenfl Ve Care for Pre.SChOO/

Ch(/dren (London, England: Royal College of General Practitioners, 1984)

gD Hall, Chair, A Macfar[ane, I/ice Chair, British pagdiatric Association Working Party on Development Surveillance In Childhood, personal commun!catlon, London/Oxford,

England, February 1987. (These are the personal opinions of Drs Hall and Macfarlane and do not reflect the final position of the worktng party )

SOURCE Off Ice of Technology Assessment, 1988
126 Ž Healthy Children: Investing in the Future

Table 6-4.— Recommendations Regarding the Performance of Specified Screening Tests in Well-Child Care

(for children 1 month to 11 years of age)

United States:

AAP, 1981a

AA F’, 1985d

Canada:

Task Force on the Periodic

Health Examination, 1979e

Canadian Pediatric Society, 1983g

Great Britain:

Court Committee, 1976i

Royal College of General

Practitioners/British Medical

Association, 1984j

Chair and Vice Chair of Working

Party on Developmental

Surveillance in Childhood, k

1987

Hearing

screening

4, 5 years b

5 yearsb

21⁄2 , 5, 10

years f

4, 5 months h

3, 5 years

7 months

41⁄2 years

7 months

21⁄2 years

41⁄2 years

8 months

41⁄2 years

Vision

screening

3-6, 8 yearsc

3, 6, 8 yearsc

2-5 years

6 months

3-6 years

7 months

21⁄2, 41⁄2 years

7 months

21⁄2 years

41⁄2 years

41⁄2 years

Blood count Tuberculosis

(Hgb/Hct) testing

Once each infancy, 12 months, then

preschool, school 1-2 years

Optional 9 months High risk 9, 15

months, 3-5 years

Low SES 9 months High risk 5 years

BCG age 5

High risk 9 months High risk 9 months

5 years

Not mentioned Not mentioned

Not mentioned “BCG when

appropriate”

Not mentioned Not mentioned

Urinalysis

Once each infancy,

preschool, school

5, 7, 9 years

Not recommended

Not recommended

Not mentioned

Not mentioned

Not mentioned

Abbreviations: AAP = American Academy of Pediatrics; SES = socioeconomic status, BCG = Bacillus Calmette-Guerin vaccine for tuberculosis. HablHct =

hemoglobirdhematocrit.

,=

aAmerican Academy of pediatrics, Committee on Practice and Ambulatory Medicine, “Guidelines for Health Supervision of Children and ‘fouth, ” information sheet,

Elk Grove Village, IL, 1981.

bsubject~ve hearing assessment at all visits and hearing evaluation suggested with speech deiay.

csubjectlve assessment at all visits.

dAmerican Academy of pediatrics, Glj/de/jne~ for Health Supervision (Elk Grove Village, IL: 1985),

e Ta sk Force on the periodic Health Examination, Health Services and promotion Branch, Canadian Depatiment of National Health and Weifare, The Periodic Hea/th

Exam/nation, 1979 (Ottawa, ON: Canadian Department of National Health and Welfare, 1979).

f“clinical exam for hearing’ ’—not clearly specified.

gcanadian pediatric Society, Child ffeaith Care Guidelines (Ottawa, ON: March, 1983),

h Me th o d not SpeCified.

iGrea t Britain, Committee on Child Health Sewices (S, D,M Coufi, chair), Fit for the Future (London, England: Her Majesty’s Stationery Office, 1976).

IRoyal College of General practitioners and the General Medical services Committee of the British Medical Association, Handbook of Preventive Care for Pre-schoo/

Children (London, England: Royal College of General Practitioners, 1984).

kD, Hail, Chair, and A, Macfarlane, Vice Chair, British pediatric Association Working pafly on Development Surveillance In Childhood, London/Oxford, England, per.

sonal communication, February 1987. (_These are the personal opinions of Drs, Hall and Macfarlane and do not reflect the final position of the working party )

SOURCE: Office of Technology Assessment, 1988.

EFFECTIVENESS OF WELL= CHILD CARE

The effectiveness of well-child care can be con- ranging from profound doubts about the effectivesidered in two ways. One way is to consider the ness of well-child care to ringing endorsements.

effectiveness of well-child care as a whole. The This difference in conclusions probably reflects

other is to consider the effectiveness of specific the political context of each review more than the

components of well-child care. considered body of knowledge.

Effectiveness of Well= Child

Care as a Whole

The literature on the effectiveness of well-child

care has been reviewed repeatedly over the past

30 years (95,103,353,379,549,578,770). Although

the body of literature on which the reviews have

been based has changed little, available reviews

have drawn dramatically different conclusions,

Although the appropriate goal for well-child

care is improvement in a child’s health status,

positing such a goal presents a substantial risk of

failure in judging the effectiveness of such care.

The health status of children in particular (and

the population in general) is far more strongly determined by social and economic factors than by

the nature of medical care (60,66,549); hence, the

contribution that well-child care can make to
Chapter 6—Well-Child Care ● 127

health outcomes is likely to be modest, and studies

to detect these modest contributions must be

based on very large samples. Few available studies

of the effectiveness of well-child care have had

very large samples.

Studies that provide insight into the effectiveness of well-child care as a whole fall into five categories:

1.

2.

3.

4.

5.

studies of the effect of varying schedules for

the frequency of well-child care visits,

studies of the effect of comprehensive care

programs that offered well-child care and

other health services to poor children in the

1960s and early 1970s,

evaluations of Medicaid’s well-child care

program—the EPSDT program,

comparisons of children’s health outcomes

in different types of health service delivery

or insurance programs, and

evaluations of services specifically aimed at

improving behavioral/developmental outcomes among children.

Studies in each of these categories are discussed

in more detail below. None of them directly address the question of the overall effectiveness of

well-child care.

The literature evaluating the effectiveness of

well-child care as a whole is summarized in the

first five tables in appendix J. Overall, a review

of available studies suggests three general conclusions. First, there is no evidence to support the

contention that well-child care as now performed

has an overall effect on childhood mortality or

morbidity. On the other hand, one would not expect much evidence because the sample sizes used

in these studies have all been inadequate to identify even a 50-percent change in the frequency of

mortality. Moreover, the measures of morbidity

in most, if not all studies, have been poorly suited

to the pediatric population.

Second, some evidence supports the contention

that participation in comprehensive child health

care, which includes, but is not limited to, wellchild care services, can reduce the frequency of

hospitalization for acute medical illnesses (336).

The inferences that can be drawn from this observation, however, are limited. From a cost perspective, the decreased frequency of acute hospitalization may be balanced by an increase in surgical

admissions for “corrective” procedures.

Third, few studies have adequately considered

the effect of well-child care on developmental/social functioning outcomes, but the evidence that

exists suggests that well-child care as performed

exerts little influence on these outcomes (97,102,

121,232). Some studies with substantial limitations in generalizability or internal validity8 imply that modifications in the practice of well-child

care may have a positive effect on some measures of social functioning.

Studies of the Effect of Varying the

Frequency of Well-Child Care Visits

The impact of reducing the frequency of recommended well-child care visits for low-risk children has been specifically considered in two studies

(204,274). Neither study found any ill health effects associated with a decrease in the frequency

of scheduled well-child visits.

There is a major difficulty in interpreting both

of these studies, however—namely, additional unscheduled well-child visits by the children randomized to the lower number of scheduled visits.

In one study, infants scheduled for fewer visits

were seen three additional times by the office

nurses for immunizations and the parents were

given informal advice and consultation (274). In

the other study, families randomized to the lower

frequency group made an average of 1.25 unscheduled well-child visits in the first 2 years of

life; at the same time, families randomized to the

higher frequency group averaged almost three

fewer visits than scheduled. Thus, the average

number of well-child visits in the first 2 years of

life was 6.19 for the lower frequency group and

7.89 for the higher frequency group—a smaller

difference than anticipated in the study design (204).

Studies of the Effect of Comprehensive Care

Programs in the 1960s and 1970s

A dramatic expansion in health services for the

poor found concrete expression during the 1960s

*Internal validity is a measure of the extent to which study results reflect the true relationship of a risk factor (e. g., treatment or

technology) to the outcome of interest in study subjects (660).
128 ● Healthy Children: Investing in the Future

in the creation of a variety of “comprehensive

care” programs for low-income children. The precise character of comprehensive care programs

varied, but in most instances, they consisted of

personal health services provided by a pediatrician in concert with a social worker and nurse and

often included availability of after-hours consultation and continuity of provider over time. Some

programs included augmented outreach activities,

such as home visiting and case management.

Evaluating comprehensive care programs, which

provide diagnosis and treatment of acute and

chronic illness, is not the same as evaluating wellchild care. Several evaluations of comprehensive

care programs did find, however, that children’s

use of well-child care services increased with participation in comprehensive care programs; therefore, evaluations of the effectiveness of comprehensive care programs have some bearing on the

overall issue of the effectiveness of well-child care.

The net result of the studies of comprehensive

care programs is ambiguous. Some studies found

improvement in school attendance (315), hospitalization rates (336), incidence of rheumatic fever (214), and greater parental satisfaction with

care (10). Other studies, however, found conflicting results, showing that comprehensive care programs had no effect on school attendance (432),

utilization of health services (540), or immunization, or health status (10,69,215).

Evaluations of Medicaid’s EPSDT Program

Medicaid’s EPSDT is a federally funded, Stateadministered program that mandates screening of

Medicaid-eligible infants and children for any illnesses, abnormalities, or treatable conditions and

referral for definitive treatment (544). Because

most State EPSDT programs follow guidelines

similar to the AAP’s 1981 Guidelines for Health

Supervision (though with fewer scheduled visits)

(20), one would expect that evaluations of the effectiveness of EPSDT in improving the health of

poor children would reflect on the effectiveness

of well-child care generally.

Unfortunately, the outcome measure used in the

two available evaluations of EPSDT—the number

of “abnormalities” detected in a screening or the

number of “referrals” made (i. e., the number of

abnormalities which are deemed to merit a referral for treatment)—is difficult to interpret. Both

evaluations reported a decline in the detection of

abnormalities with a child’s time in the EPSDT

program (298,321), although in one study (298),

the decline became apparent only after adjusting

for a general trend toward increased case finding.

Because no specific information is provided about

the precise nature or remediability of these “abnormalities, ” the importance of a reduction in abnormalities/referrals is difficult to interpret. g Thus,

the evidence regarding the effectiveness of wellchild care that these two studies of the EPSDT

program can contribute is limited at best.

Comparisons of Child Health Outcomes in

Different Health Service Delivery Systems

and Insurance Programs

Different systems of care—e.g., solo or group

practices, fee-for-service systems, or prepaid

health maintenance organization (HMO) type

programs—offer different levels of well-child care.

If health outcomes are improved in systems that

provide more well-child care, one could infer, at

least within limits, that well-child care is effective. Two major studies have sought to evaluate

the effectiveness of well-child care by examining

health outcomes of children in different health delivery systems (329,726).

The first study was undertaken by Kessner and

colleagues in the early 1970s in Washington, DC

(329). The health outcome measures used in this

study—intended to reflect short-term outcomes

that both had intrinsic health significance and

were amenable to medical intervention—were

iron-deficiency anemia, visual disorders, middleear infection (acute and chronic), and hearing loss.

The investigators found that, after adjustments

were made for social class differences in who used

different types of providers, there were no differences in any measure of “health status.”10

9Additional caveats in interpreting the effectiveness of EPSDT are

brought to light by Reis’s review of unpublished Division of Maternal

and Child Health evaluation projects (520). These projects demonstrate great variability in the proportion of the eligible population

that is actually screened and in the proportion of those screened

who are identified as having a problem.

IOAreanaly5i50[theKessmy data found that users of both prepaid

programs and outpatient department clinics had slightly better health

status measures than users of solo practitioners (144). The differences were small, however, and may have been due more to the

characteristics of the practitioners themselves than to the effectiveness of well-child care.
Chapter 6—Well-Child Care ● 129

Investigators in the second major study, a Rand

study, randomly assigned children to one of several health insurance plans that offered varying

percentages of cost-sharing or free care (726). ”

Health outcome measures used in the Rand study

included measures of physiologic health (anemia,

hay fever, middle-ear fluid, hearing loss, and

visual acuity); limitations in daily activities; mental health perceptions; and general health perceptions. Among children in the different insurance

plans, the investigators found no statistically significant differences for any health outcome. The

only potentially clinically significant difference

they noted between children in the free care and

children in the cost-sharing group was the prevalence of anemia among poor children who were

anemic at the start of the study.

The relevance of the Rand report’s findings to

the evaluation of well-child care depends, as does

that of Kessner’s findings, on whether the different groups of children received different amounts

of well-child care. The partial results of the utilization data for children that have been presented

(370) suggest that children in cost-sharing plans

did use fewer well-child services than children in

free care.

The Rand study has been extensively critiqued

(244,611) because of the substantial attrition (40

percent) of the initial study group and the small

sample size. Critics argue that the health outcome

measures used in the Rand study (with the exception of anemia) may not be responsive to medical therapy and that the study did not consider

social functioning outcomes. Furthermore, although differences in health outcomes between the

poor children in free care versus poor children in

cost-sharing plans were not statistically significant, the poor children in cost-sharing plans “were

in worse health at the end of the experiment than

those in the free plan on six of the eight health

measures” (611).

Considering both the original reports and the

critiques together, one can reasonably conclude

that cost-sharing reduces utilization of both preventive and illness-related services and that this

reduction is unlikely to affect adversely the physical/physiologic health of low-risk populations.

1 ]The Rand Study is described further in ch. 2.

The data are consistent with the hypothesis that

cost-sharing adversely affects some measures of

health status among the poor, although this is far

from definitive. The specific effect of reducing the

use of health services on developmental/social

functioning remains unexamined.

Studies of the Effect of Well-Child Care on

Child Behavioral/Developmental Outcomes

The studies that have examined the global effectiveness of well-child care have not considered

behavioral and developmental outcomes to any

significant extent. However, one study did specifically examine how different styles of well-child

care as practiced in clinical settings influence behavioral and developmental outcomes; also, a variety of studies have examined how special types

of well-child care might affect such outcomes.

One study compared the influence of pediatricians using different degrees of teaching effort in

their well-child care on a variety of maternal and

child behavioral and developmental outcomes

(102). This study found a strong correlation between teaching effort and maternal knowledge

and a small but significant correlation between

teaching effort and the mother’s self-reported level

of positive interaction with her child. On the other

hand, the study found that increased teaching was

correlated with increased reported behavior problems among children; it found no correlation between teaching effort and formally measured developmental test results, This study is limited by

a small sample primarily drawn from middle-class

children, but on the whole, its methodological

limitations probably minimized the reported effects of the teaching efforts.

The other studies examining the effect of wellchild care on developmental and behavioral outcomes are more appropriately considered efficacy

studies. In the most methodologically sophisticated of these studies, the intervention consisted

of targeted counseling during well-child visits (97).

This study found that after 6 months, the group

that received counseling ranked higher on scales

of maternal-infant interaction than the group that

did not receive counseling. No differences in Bayley developmental test scores were noted.
130 . Healthy Children: Investing in the Future

Two other studies of augmented behavior counseling also found small effects (121,232). One

found fewer fears in the intervention group than

in the control group, little difference in developmental test results, and significant worsening in

the intervention group in their responses to the

“early school personality questionnaire” (121).

The other found differences in early IQ tests that

increased up to age 3 and decreased thereafter (although sample attrition may have biased these

findings) (232). A variety of measures of self-

-confidence also showed improved results in the

experimental group. However, the extensive nature of the intervention in the latter study—far

broader than current ideas of the content of wellchild care—makes it incorrect to generalize to the

effectiveness of well-child care.

Conclusions About the Effectiveness of

Well-Child Care as a Whole

The literature evaluating the effectiveness of

well-child care is perhaps more remarkable for its

limitations than for its findings. No evidence supports the contention that well-child care (other

than immunization) significantly influences mortality or morbidity among children or that it enhances the development of a child’s social competence. On the other hand, sample sizes have

been uniformly too small and followup too brief

to identify mortality changes; the available measures of childhood morbidity have been inadequate

and most investigators have not even looked at

developmental outcomes. The particular importance of the outcome measures examined to date

and their duration of impact have not been evaluated. For these reasons, expert opinion and good

intentions rather than scientific data must be used

to guide the provision of well-child care. Participation in well-child care does seem to provide substantial satisfaction to both parents and providers,

and the value of their satisfaction should not be

overlooked.

Effectiveness of Five Specific

Components of Well= Child Care

Given that the evidence on the effectiveness of

well-child care as a whole is very sparse, it is

worth looking at the components of well-child

care to ascertain whether evidence on these procedures allows for judgments about their effectiveness. OTA selected five specific components

of the well-child visit for a review of the available evidence:

1. the general physical examination,

2. the Denver Developmental Screening Test

(DDST),

3. screening to detect iron deficiency (anemia),

4. screening to detect hearing deficits, and

5. anticipatory guidance on child safety restraint use.

The evidence on three of these components—

the physical examination, the DDST, and anticipatory guidance on child safety restraints—is summarized in appendix J. Other components of wellchild care—including vision screening and dental

examinations—are not reviewed in the discussion

that follows. The purpose of the discussion of the

effectiveness of specific components of well-child

care below is not to be comprehensive, but to illustrate the kinds of evidence available on the effectiveness of commonly recommended procedures.

The effectiveness of one component of wellchild care—childhood immunization—is well established. Childhood immunizations for poliomyelitis, DTP, MMR, and Hib clearly prevent illness

or premature death due to certain diseases (358).

General Physical Examination

The general physical examination is a series of

diagnostic tests intended to detect a variety of

medical conditions. The literature evaluating the

physical examination in well-child care is summarized in table J-6 in appendix J. In general, the literature does not endorse the usefulness of the exam.

The exam detected previously unknown abnormalities in 1 to 3 percent of routine exams of preschool and 5 percent of school-aged children (30,

464,770). Followup exams resulted in fewer newly

diagnosed conditions than initial exams, with 1

out of every 251 exams yielding new information

(771). Studies comparing exams by physicians

with exams or screening of school-age children by

other health professionals (e. g., nurses or technicians) found that many more abnormalities were

detected in school-based screening programs than

by physicians (129,221,347,746). Many of the abnormalities detected in these studies were vision
or hearing abnormalities on which the physicians

may have placed little emphasis, knowing that

they would be performed at school.

All but one of the studies examining the effectiveness of the general physical examination (with

or without screening measures for hearing or vision defects) concluded the exam has little merit.

The most glaring weaknesses of available studies

are that none of the studies test the validity of either positive or negative findings obtained on examination and that none examine the clinical usefulness of finding physical abnormalities. (In one

study of the physical examination in infants, over

one-half of the abnormalities found were already

known to the parent. ) Therefore, it is not possible to gauge the effectiveness of the exam. ’z

The Denver Developmental Screening Test

(DDST)

The most widely used and recommended developmental screening tool for use by child health

personnel is the DDST or one of its adaptations—

the DDST-S or the Parents’ Developmental Questionnaire (15,96,187). The primary purpose of administering the DDST is to identify children likely

to have later problems so that interventions can

be used early enough to prevent the problems, although other reasons include reassuring parents

that their child is normal.

The cumulative evidence suggests that the DDST,

when administered immediately prior to school

entry, has fair ability to predict developmental

abnormalities accurately (87,88,524,629) (see table J-7 in app. J). The very limited evidence presented to date, however, does not support the assumption that detection of a problem will result

in improvement in school performance; indeed,

the parents of children with problems seem to

worry more with no improvement in outcome (87).

OTA found no specific studies on whether identification of developmental delay through the use

of the DDST for children of preschool age is a

IZOTA did not review Studies examining the effectiveness of specific physical diagnostic procedures, such as the Ortalani maneuver for identification of congenital dysplasia of the hip, forward

bending for detection of scoliosis, patch testing for discovery of

strabismus, or abdominal palpation for detection of tumors. Given

the focused nature of these examinations, their effectiveness should

be easier to clarify than that of the general examination.

Chapter 6—Well-Child Care ● 131

useful effort. The recent results of programs offering early intervention are encouraging (568,587,

749), but eligibility for participation in these programs is usually determined by the socioeconomic

and demographic characteristics of the child’s family rather than by the child’s developmental scores.

If the use of the DDST, or comparable tests, is

to be recommended in the context of well-child

care, this recommendation must be based on intuitive or philosophic rather than scientific grounds.

Screening To Detect Iron Deficiency (Anemia)

Anemia is a condition that exists when the level

of hemoglobin in a person’s blood drops below

11 grams per deciliter of whole blood (186), signifying a reduction in the oxygen-carrying capacity of the blood. In unselected populations of children, the overwhelmingly predominant cause of

anemia is iron deficiency (186). Indeed, screening for anemia in infancy and childhood is recommended, in large measure, as a screen for iron

deficiency.

The prevalence of anemia in a population has

long been used as a measure of that population’s

health status, socioeconomic status, and quality

of medical care (186,327). From 10 to 40 percent

of infants 12 to 24 months old (depending on race

and socioeconomic status) are somewhat anemic

(292), although severe anemia is far less prevalent (728).

Studies differ on whether being anemic per se

is harmful (388,500). Available studies do suggest

—but not definitively—that iron deficiency results

in lowered developmental/ intelligence quotients

(131,132,386,387,388,474,475,599,737,741). Most

studies suggest that iron therapy results in shortterm improvement on developmental tests for

clearly iron-deficient and anemic children, but

some studies have not supported this conclusion,

and longer term effects are even more uncertain.

Iron therapy rapidly corrects anemia and the

biochemical markers associated with iron deficiency, although for many children, the improvements would occur (though more slowly) without therapy (132). Various studies have shown

that iron therapy sometimes, though not always,

reduces deficiencies in mental performance in irondeficient children (132,386,388).
132 • Healthy Children: Investing in the Future

Even assuming the seriousness of iron deficiency

and the effectiveness of treatment, there are problems in establishing a screening criterion for iron

deficiency. The accepted standard for diagnosis

of iron deficiency is response of at least 1 gram

of hemoglobin per deciliter of blood to a therapeutic regimen of iron (517,599). Other tests for

identifying iron deficiency also exist, but have not

been tested in an unselected American population

against the diagnostic standard. A study of anemic children in military families found that no single commonly used cutoff level for hemoglobin

identified many more than half of the children

who responded to iron therapy (141,517). Another

study found that pretreatment hemoglobin level

per se was the best indicator (highest sensitivity

and specificity) of subsequent response to iron

therapy; the FEP (free erythrocyte protoporphyrin) also performed well, especially as a screening test for more severe iron deficiency (331).

Given the potential seriousness of the defects

induced by iron deficiency and the ease of addressing the hematologic manifestations, continued

early identification of high-risk infants (e.g., those

of low socioeconomic status) with either a capillary hemoglobin/hematocrit or FEP appears reasonable, with a liberal threshold (e. g., hemoglobin of less than 11.5 grams or FEP greater than

35 micrograms per deciliter of whole blood) for

institution of a trial of iron therapy.

Screening for Hearing Deficits in Preschoolers

AAP and other bodies concerned with hearingimpaired children recommend a threefold approach

to the early detection of children with hearing

problems (15):

1.

2.

identification of high-risk newborns through

application of risk criteria,13

identification of infants and toddlers through

monitoring of speech and language develop-

‘3AAP and the Joint Committee on Infant Hearing Screening currently recommend a set of criteria for identifying high-risk infants

in need of screening for hearing deficits (284). Infants who meet one

or more of the criteria are referred for extensive diagnostic audiologic evaluation. The precise sensitivity and specificity of these

screening tests and their optimal combination for early identification of hearing deficits are controversial (6,492).

ment (possibly including use of formal speech

and language screening instruments), and

3. identification of preschoolers through the use

of some form of formal hearing screening

test.

Although the greatest burden of severe hearing

loss occurs in the perinatal period, screening newborns is difficult; screening in preschoolers is relatively easy, and the focus here is on the effectiveness of screening for hearing deficits in preschoolers.

Approximately 5 to 10 percent of preschool and

early school-age children have at least temporary

hearing impairment as a result of the presence of

middle-ear fluid (168,174,348,463). Most cases of

middle-ear effusion resolve spontaneously or with

the help of antibiotics over a period of weeks to

months (93,400,478). Surgical drainage is also effective, although it involves risk and expense and

the duration of hearing improvement may be brief

(73). Whether children who experience middleear effusion suffer long-term problems in speech

and language skills or are at increased risk for subsequent learning and behavioral disorders remains

an open question. Severe bilateral conductive

hearing losses, particularly at earlier stages of language development, probably do cause short-term

speech and language delays (478,730).

Preschoolers are in most cases screened through

the use of pure-tone audiometry, which involves

having the children listen to sounds across a range

of frequencies and indicating when they hear the

sound. A Canadian group that tried to assess the

utility of community preschool screening found

that such screening was not associated with a significant decrease in the prevalence of hearing deficits (168). The failure of the screening program

was ascribed to the limited effectiveness of interventions for the treatment of middle-ear effusion.

Issues surrounding the early identification of

hearing deficits through screening in early childhood are surprisingly complex. Pure-tone audiometry, when properly performed, is a sensitive

and specific means for detecting hearing deficits.

Given the uncertain impact of most of these deficits, and the vagaries of treatment efficacy, however, whether preschool children are better off for

having been tested also remains unknown.
Chapter 6—Well-Child Care ● 1 3 3

Anticipatory Guidance on Child

Safety Restraint Usel4

The provision by a health care provider of anticipator-y guidance on injury prevention—specifically, guidance on the use of child safety restraints in motor vehicles—offers an excellent

opportunity to evaluate the effectiveness of this

aspect of well-child care. First, the outcome

measure—proper use of child safety restraints— is

objective. Second, the scientific underpinnings of

the recommendation are clear—proper use of an

approved child safety restraint will almost certainly reduce the child’s likelihood of death or injury due to motor vehicle accident (538). The same

degree of certainty does not exist regarding the

value of advice about the precise timing and order of introduction of solid foods for infants or

about means for preventing or modifying behavioral problems.

Studies of the use of child safety restraints in

motor vehicles are summarized in table J-8 in appendix J and discussed in chapter 7. The more

methodologically sophisticated studies of the impact of anticipatory guidance on the use of child

safety restraints in automobiles failed to demonstrate a substantial effect, although the findings

indicate that pediatricians can accelerate use of

infant restraints in those likely to use such restraints eventually (523). Whether the limited efficacy of physician counseling in increasing proper

use of infant restraints can be generalized to all

of anticipatory guidance as usually performed is

doubtful.

COST-EFFECTIVENESS OF CHILDHOOD IMMUNIZATION

The effectiveness and safety of a vaccine is extensive] y tested before it is approved for marketing. Consequently, in contrast to the five components of well-child care discussed previously,

the effectiveness of the currently available childhood vaccines is well understood. The remaining

question is whether childhood immunization is

cost-effective—i.e., whether the costs of immunization are worth the benefits they confer. The

literature is richly laden with research on the costeffectiveness of specific immunization protocols.

That literature is discussed below.

Literature Review

Many studies have analyzed the costs and effectiveness of the vaccines that are recommended

for routine use in this country. Some of the more

recent economic evaluations of childhood vaccination programs are summarized in table J-9 in

appendix J. These studies show that childhood immunization not only yields considerable diseasereduction benefits but also offers substantial economic benefits—i. e., savings in costs that would

have been incurred had the disease and its complications not been prevented (13,37,62,110,150,

164,260,272,350,351,404,505,567,748,758) .
134 . Healthy Children: Investing in the Future

confers substantial net economic benefits. A recent study found that over a 6-year period for a

hypothetical cohort of 1 million children, a pertussis vaccination program prevented over 92,000

cases; in addition, such a program saved a total

of $44 million in direct lifetime medical costs for

the cohort of 1 million children (272).

Combining single vaccines into one vaccine for

multiple diseases improves the economic benefits

of vaccination by decreasing the cost of vaccine

administration. In 1983, the use of a combined

MMR vaccine rather than individual vaccines for

measles, mumps, and rubella saved $60 million

in direct medical costs and increased productivity

(748).

A study of Hib vaccination found net savings

in societal medical care costs (110). That study

also assessed the cost and effectiveness of administering Hib vaccine to young children at different ages. The most cost-effective Hib vaccination

strategy proved to be immunization at 18 months

of age, with net medical care savings of $30.7 million. Hib vaccination at 24 months of age was also

cost saving, but with a net savings of only $1.1

million. The considerable difference in cost savings was due to the study’s assumption that the

18-month Hib vaccination would be administered

at the same physician visit as the already routine

DTP vaccine, thus avoiding the administrative

cost of an additional doctor visit that would be

required at 24 months (110). The adoption of

ACIP’s recent recommendation to move the 18-

month DTP and OPV immunizations to the 15-

month visit would mean that the cost of an 18-

month Hib vaccination would have to include the

cost of an additional doctor visit. Assuming a $10

office visit cost, including the cost of a doctor visit

would increase the 18-month Hib vaccination cost

by about $30 million, which would nearly erase

the reported net savings to an 18-month strategy.

If the researchers had estimated the office visit fee

at $15, Hib vaccination would no longer provide

net savings in health care costs at either 18 or 24

months, but would still confer substantial medical benefits in reduced morbidity and mortality.

Critics of the Hib vaccination study have also

observed that it is based on the assumption that

the Hib polysaccharide vaccine is effective in the

18- to 23-month-old population (220). A randomized controlled trial of clinical efficacy conducted in Finland found that the Hib vaccine was

90 percent efficacious in children 24 months or

older (483). However, the data for that study were

insufficient to determine efficacy for the subgroup

of children immunized at 18 to 23 months (220).

The Hib polysaccharide vaccine is clearly not efficacious in children under 18 months of age (482).

A more recent study of Hib vaccination found

that universal vaccination at 24 months resulted

in net savings of $4 million (260), compared to

$1.1 million in the earlier study (110). In broadening the analysis to include indirect costs and benefits (i.e., lost lifetime earnings due to Hib), the

investigators found that the 24-month strategy

would result in a net savings of $64.8 million.

A newly developed varicella (chickenpox) vaccine may soon be licensed for use in high-risk

groups in the United States (505). One study

found that over a 30-year period, a childhood

varicella vaccination program would result in a

net savings of $252 million in direct medical costs

(505). However, this study did not consider the

possible increased risk of disease in adults, in

whom the disease is more serious. 17 If vaccinating all children against varicella does not place

adults at increased risk of disease, then there

would be substantial direct medical cost savings

by implementing such an addition to the childhood immunization program (505).

Impact of Vaccine Costs on Estimates

of Net Cost Savings

Over the past few years, as a result of the vaccine liability crisis, vaccine prices have risen dramatically (654). The burden of liability litigation

ITConcern has been raised about the long-term efficacy of the

varicella vaccine (743). Varicella (chickenpox) is much more severe

when contracted during adulthood than during childhood. Critics

assert that vaccinating all children against varicella could leave those

children at increased risk of susceptibility in later years (7s).
imposed on vaccine

eral manufacturers

Chapter 6—Well-Child Care ● 135

manufacturers has caused sevto pull out of the market and

others to dramatically raise vaccine prices. The

primary problem is the uncertain legal environment that manufacturers face regarding lawsuits

over adverse reactions to vaccines (three-fifths of

which are over the DTP vaccine (654)).

OTA analyzed the sensitivity of the results of

the most recent pertussis cost-effectiveness study

(272) to assumptions about increased current

pertussis-component prices. The 1984 cost-effectiveness study assumed that the cost of pertussis

vaccine was $0.03 per dose, and found the ratio

of savings in direct medical costs to the costs of

a pertussis vaccination program to be 11.1 to 1

(272). Subsequently, as a result of the vaccine liability crisis, the cost of the pertussis vaccine rose

sharply. In 1987, the Federal Government paid

$7.69 per dose for the pertussis component of the

DTP vaccine, and the private sector price was

$8.92 (739), most of which was added to cover

the costs of legal liability (287). If the study’s calculations are adjusted to reflect these current

prices, the ratio of savings in direct medical costs

to the costs of a pertussis vaccination program

drops from 11.1:1 to 1.29:1 at the government

price and to 1.13:1 at the private sector price (see

table 6-5). A ratio of 1.0:1.0 means that a vaccine pays for itself in reductions in direct medical care costs alone. At the government price and

even at the private sector price, therefore, DTP

still pays for itself in reductions in direct medical

care costs alone.

Conclusions About the CostEffectiveness of Childhood

Immunization

The cost-effectiveness of childhood vaccines is

well established in the literature—indeed, such

vaccines not only confer medical benefits but are

cost-saving. Two recent cost-effectiveness studies

demonstrate that the new Hib vaccine is costsaving as well. Despite a rapid rise in price, the

most controversial vaccine—DTP vaccine—continues to be cost-saving. As vaccine prices

increase, however, costs saved with childhood immunization programs diminish. Thus, developments with regard to the current vaccine liability

crisis will have an impact on whether childhood

immunizations continue to be cost-saving.

New technologies on the horizon also will have

an impact on the cost-effectiveness of childhood

immunizations. Two new DTP vaccines developed by the U.S. National Institutes of Health and

Japanese researchers could substantially reduce

the number and seriousness of adverse reactions

to the pertussis component of the vaccine. A reduction in adverse reactions could decrease the

amount of corresponding litigation and ultimately

reduce vaccine prices.

Table 6-5.—impact of Vaccine Prices on the Cost-Effectiveness of Pertussis Vaccine

Cost reduction in net

Savings-to-cost medical costs attributable

Pertussis vaccine price per dosea

ratiob

to pertussis vaccine

Price estimated by Hinman and

Koplan, 1984C

. . . . . . . . . . . . . . . . $0.03 11.1:1 820/o

Federal Government price

in 1987 . . . . . . . . . . . . . . . . . . . . . $7.69 1.29:1 20 ”/0

Private sector price in 1987 . . . . . . $8.92 1.13:1 180/0

aprice of DTp vaccine minus price of diphtheria and tetanus components of the vaccine

bRatio of savings in direct medical costs to the costs Of pertuSSiS vaccine

CAR Hinman and J,P, Koplan, “Pertussis and Pertussis Vaccine Reanalysis of Benefits, Risks, and Costs, ” J A M A 251(23)

3109-3113, 1984

SOURCE P Home, Dwls!on of Immunization, Centers for Disease Control, Public Health Service, U.S. Department of Health

and Human Services, personal communication, Atlanta, GA, January 1987, Washington Report on Medicine and Health,

“Lederle, Con naught Drop DPT Prices, ” Washington Report on Medic/rre and Hea/fh 41(20) 2, May 18, 1987; and OTA

calculations.
136 ● Healthy Children: Investing in the Future

FINANCING AND AVAILABILITY OF WELL-CHILD CARE SERVICES

Children with private health insurance in the

United States, with the exception of children in

HMOs, are seldom covered for well-child care

services. As discussed below, however, the Federal Government supports well-child care services through a variety of programs, ranging from

Medicaid to childhood immunization programs.

The discussion of the availability of well-child

services below focuses on the most clearly effective and cost-effective component: childhood immunization. Children in the United States are routinely immunized against polio and several other

diseases. In part because States have laws requiring proof of immunization prior to school entry,

the percentage of children entering schools who

have had their basic immunizations in the United

States is very high. In contrast, immunization

levels of children at 2 years of age are well below

the objectives for 1990 set by the U.S. Public

Health Service.

Private Insurance Coverage of

Well= Child Care Services

Preventive health services such as well-child

care visits or childhood immunizations are infrequently a benefit under private health insurance

plans. Only recently have some insurers offered

preventive health plans for privately insured children (405). Even when coverage of preventive

services is included in a benefit package, however,

effective coverage is limited by the nearly universal existence of first-dollar deductible requirements. 18

In contrast, virtually all HMOs provide preventive health services in their insurance plans. Indeed, the provision of well-child care is required

of HMOs for them to be federally qualified. (Onehalf of all HMOs are federally qualified (297).)

As of January 1, 1987, 28 million people in the

United States were enrolled in HMOs, accounting for 11.7 percent of the U.S. population (264).

Furthermore, the number of HMO enrollees is

growing rapidly (a rate of 25 percent per year at

the end of 1986) (264).

IsAbout w ~rcent of all employer-based private health plans have

deductibles of $100 or more (768).

Medicaid Coverage of Well-Child Care

for Eligible Poor Children

As the major third-party payer for health care

of very poor children, Medicaid’s policies toward

the provision of well-child care have a great deal

to do with how much and what kinds of services

these children receive. Although under one-half

of all children in poverty are eligible for Medicaid (see ch. 3), the children who are eligible are

covered for a range of well-child care services that

greatly exceeds those services covered by private

insurance plans.

Well-child care is provided to Medicaid children through two avenues. In some States, the

State covers well-child care visits under its basic

Medicaid plan. As of 1985, 32 States explicitly

allowed private practitioners to bill for routine

pediatric examinations (544), and others may allow this practice by lax utilization controls. ” In

all States, well-child care services are covered

through the EPSDT program. The EPSDT program is a federally mandated program of preventive and comprehensive services that States must

make available to all categorically eligible Medicaid children. It is intended to be a comprehensive system that combines screening for health

problems with outreach, followup care, and case

management to ensure that health problems identified in screening visits are actually addressed.

The EPSDT program was established by Congress in 1967 but was implemented exceedingly

slowly by both the Federal Government and the

States (10,544). Final regulations governing the

implementation of the program did not take effect until January 1985. During this long period,

States proceeded at varying speeds to set up

EPSDT programs. State EPSDT programs vary

in their design and organization, and in most

States, EPSDT services have been used by only

a minority of Medicaid-eligible children (508).

19 Not much is known about the amount, kinds, or quality of WX’-

ices rendered in this way, but in one State (Michigan) about 7 percent of physician and ambulatory care visits reimbursed by Medicaid for children in families receiving Aid to Families With Dependent

Children in 1983 were for routine checkups (469).
- 

Chapter 6—Well-Child Care . 137

Photo credit. March of Dimes Birth Defects Foundation

Medicaid’s Early and Periodic Screening, Diagnosis, and

Treatment program is the major third-party payer for

well-child care of very poor children.

The legislative mandate and Federal regulations

for EPSDT do not require a particular organization, but they do specify requirements such as the

following for the structure of the delivery of care

and, to a lesser extent, the content of that care:

. informing eligible clients of the availability

of EPSDT services;

• providing transportation and appointment

scheduling assistance;

● providing screening services to children that

include regularly scheduled examinations and

evaluations of physical and mental health;

● providing diagnostic and treatment services

for any problems uncovered in a child’s

screening visit, if the services are covered in

the State’s Medicaid plan; 20 and

. setting standards and a system for achieving

timeliness of provision of EPSDT services.

ZoVlslon, dental, and hearing treatment must be supplied to

screened children regardless of whether they are covered in the State’s

plan (49 FR 43654),

In all 50 States, the families of children eligible

for EPSDT are informed at the point at which application is made for Medicaid benefits, but 30

States make additional outreach efforts such as

scheduling a visit at the time of initial application or recruiting through Head Start programs,

day-care centers, and hospitals (508). Such outreach efforts were originally encouraged by EPSDT

legislation, which paid at a higher Federal matching rate for administrative costs associated with

EPSDT than the Federal matching rate for the

regular Medicaid program. In 1981, however, that

extra match was eliminated.

Despite many innovative attempts by States to

enhance children’s participation in the EPSDT

program, it remains unclear what approaches

work for specific kinds of populations. An evaluation of 15 demonstration programs in both 1972

and 1978 was unable to identify strategies that

were particularly successful in increasing the low

rates at which children were screened (519). In fiscal year 1985, only 18 percent of the eligible population was screened, the same percentage as had

been screened in fiscal year 1981 (508).

Once a child is entered into the EPSDT program, the first encounter is the screening visit. Depending on the State, the screening visit may be

to a private physician’s office (in Wisconsin, 70

percent of all screens are performed by private

physicians), a health department screening clinic

(in Michigan, over 90 percent of all screens take

place in public clinics), or some other provider

(508). If a health problem is identified in a screening visit, the child is referred for further diagnosis and treatment. Referrals requiring a followup

visit, either to the screening clinic or to another

provider, tend to reduce the rate of resolution of

problems identified on the screen (519).2

’

The 1985 Federal EPSDT regulations gave States

incentives to develop arrangements with “continuing-care providers, ” who would be required

to provide the full range of EPSDT screening,

diagnosis, treatment, and referral for followup

services as well as all physician services under

zlFederal regulations require that immunizations be Provided at

the time of screening if medically necessary and appropriate.
138 ● Healthy Children: Investing in the Future

Medicaid. 22 The goal of the regulations was to improve the continuity of care provided to Medicaid children. States appear to be entering into

these continuing-care agreements as part of a more

general effort to enroll Medicaid recipients in primary care case-management plans authorized by

the Omnibus Budget Reconciliation Act of 1981

(Public Law 97-35) (544). Most of these continuing-care arrangements are with private physician

practices or HMOs, although some States are

recruiting publicly funded clinics (544). About 8

percent of EPSDT eligible children were enrolled

in continuing-care arrangements in 1986 (273).

Several important issues regarding Medicaid’s

policy with respect to EPSDT have been raised

by critics of the program. Several of them are discussed in turn below.

Adequacy of State EPSDT Protocols.—Most

States (42 of 46 surveyed in 1985) have established

schedules for well-child care visits under EPSDT

that involve fewer visits than the number currently recommended by AAP (544). Little is

known about the impact of fewer well-child visits

on health outcomes. Indeed, most nonpoor children do not receive the full complement of wellchild visits recommended by AAP. However, it

is impossible to say whether a schedule with less

frequent visits is acceptable for poor children, who

are more likely than nonpoor children to have

health problems.

Discontinuity of Care Due to Volatility of Eligibility for Medicaid.—A large proportion of the

children eligible for Medicaid are eligible for only

a part of a year (86). If a lapse in Medicaid eligibility prevents a child from continuing in the care

of a health care provider that the child has been

using while under Medicaid, this situation may

disrupt continuity of care. Some observers argue

that States should make greater efforts to enlist

publicly funded clinics that serve Medicaidineligible populations—e.g., community health

centers or public outpatient clinics—as EPSDT

continuing-care providers (544). If such clinics

were EPSDT continuing-care providers, then

Zlprovision of dental services under these arrangements is optional t

but if the continuing care provider chooses not to provide such services, then the provider must refer recipients to the Medicaid EPSDT

agency to obtain these services (49 FR 43654; 42 CFR 441 .60(a) (4)).

when children lost their Medicaid eligibility, their

continuity of care could be maintained with the

same clinic. Of course, this approach would mean

channeling Medicaid children to a health care delivery system separate from that used by other,

more affluent children.

Need To Recruit Private Providers Into the

EPSDT Program. —The low screening ratios for

Medicaid children under EPSDT appear to result

in part from low participation by private physicians in the EPSDT program. Two States found

that enhanced efforts to recruit private providers

into the EPSDT program increased the screening

ratio (401,732). It is not clear, though, whether

such changes reflect a real increase in the amount

of well-child care provided or merely a switch

from the provision of such services under the regular Medicaid program to the EPSDT program. Private physicians’ provision of EPSDT screens may

reduce physical barriers to these services, enhance

the doctor-patient relationship, and improve access to episodic acute care. On the other hand,

some private physicians may be less able to provide a comprehensive array of services than a publicly funded clinic.

EPSDT v. Regular Medicaid Coverage of WellChild Care Services.—The poor rates of participation in EPSDT by eligible children clearly understate the use of and access to well-child care

services among these children. Many of these children receive well-child care services through the

regular Medicaid program, presumably from a

private physician or publicly funded clinic. For

children who are not served under EPSDT

continuing-care agreements, the use of the regular Medicaid program may enhance the continuity of care and their access to acute care. On the

other hand, EPSDT services include augmented

vision, hearing, dental, and sometimes other services not available through the regular Medicaid

program. Indeed, under EPSDT (unlike the rest

of Medicaid), a State may provide virtually any

services it wishes on an as-needed basis to children, provided the need for the services was identified through an EPSDT screening examination

(49 FR 43654, 42 CFR 441.57).23

“One State uses the EPSDT program to provide home services

to technology-dependent children (664),
Cnapter 6 —Well-child Care • 139

To some extent, the development of EPSDT

continuing-care arrangements by States should

mitigate the problems related to the separation of

regular Medicaid services from EPSDT services

and bring together the two sets of services. In

many areas, however, the growth of continuingcare arrangements is likely to be slow, and the

choice is between providing well-child care for

low-income children through channels that are

convenient to private practitioners (i. e., regular

Medicaid) or through channels that are subject to

more monitoring and control over the quality of

services (EPSDT programs).

Public Direct Subsidies for

Well= Child Care

A number of public programs provide or support childhood immunization services and other

well-child care. A childhood immunization program that is a coordinated Federal, State, and local effort provides vaccines for approximately

one-half of the children in the United States. There

exists no similar coordinated effort for other wellchild care; rather, well-child care for some children is obtained (or financed) through many different Federal programs.

Federal Support for Childhood Immunization

Approximately one-half of all childhood vaccines are delivered by the public sector; the other

half are delivered by the private sector (654). Vaccine manufacturers have three primary markets

for their vaccines:

1. bulk and consolidated contract sales to the

Federal Government,

2. bulk sales to State and local governments,

and

3. retail sales to hospitals, clinics, and physicians (654).

Through the purchase of vaccines and through

other research, operational, and surveillance programs, the Federal Government plays a leading

role in the effort to immunize U.S. children against

diseases preventable by immunization. Vaccinations are actually provided to children at the State

and local level, however.

The Federal Government became involved in

immunization programs for children in the 1950s,

when Congress passed the Poliomyelitis Vaccination Assistance Act of 1955 (Public Law 84-377).

Since then, the Federal role has been expanded,

most notably through the Vaccination Assistance

Act of 1962 (Public Law 87-868)—a law which

provided for Federal grants to States and localities for vaccination programs. The Communicable Disease Control Amendments of 1970 (Public Law 91-464), through a newly created Section

317 of the Public Health Services Act, provided

the Federal Government with authority to assist

State and local governments in the prevention and

control of communicable diseases. Under Section

317, States receive Federal grants for the purchase

and delivery of vaccines based primarily on their

population, income, public sector involvement in

vaccine administration, past levels of disease, and

other factors (50). States then use the grant money

to purchase vaccines and deliver the vaccines

through their local public health structure or, if

no public health structure is available, through

private physicians (286). States may be awarded

vaccines in lieu of cash if so requested (50).

Several U.S. Government establishments have

vaccine-related responsibilities. The National Institute of Allergy and Infectious Diseases, one of

the National Institutes of Health, is involved in

vaccine research and development, primarily

through funding basic and epidemiological research. The Food and Drug Administration’s Center for Drugs and Biologics is responsible for the

licensing and testing of vaccine manufacturers and

their products (658). The Center for Disease Control’s (CDC) Division of Immunization is responsible for developing and implementing national

goals and activities for childhood immunization,

Operating under Section 317 of the Public

Health Services Act, CDC coordinates the distribution of Federal funds to State and local health

departments for the purchase of vaccines. The

level of Federal funding under Section 317 was

increased from $56.9 million in 1986 to $87.5 million in 1987—in an attempt to compensate for increases in vaccine costs and births, to include the

Hib vaccine in the Federal purchase program, and

to establish a 6-month stockpile of childhood vaccines (286). CDC also negotiates consolidated pur-
140 ● Healthy Children: Investing in the Future

chase contracts with manufacturers—contracts

that realize savings that States could not achieve

on their own. Finally, in addition to making

grants to States, CDC 1) provides statistical,

promotional, educational, and epidemiological

assistance, as well as consultation to State and local health departments; 2) conducts a nationwide

disease surveillance program; 3) monitors national

immunization levels and adverse events occurring

in the public sector; 4) maintains a stockpile of

vaccines and injector equipment in case of epidemics or the disruption of vaccine supply; and

5) develops guidelines for the use of vaccines

(654,682).

Other Federal Support for Well-Child Care

Federal support for well-child care goes beyond

support for childhood immunization. As discussed

below, well-child care for children in low-income

families or special demographic categories is provided or funded by several Federal programs:

● the Maternal and Child Health (MCH) block

grant program,

● the Preventive Health and Health Services

(PHHS) block grant program,

● the Head Start program,

. community health centers (CHCs) and migrant health centers (MHCs), and

● the Indian Health Service (IHS) of the Public Health Service.

Because these programs provide more than wellchild care, they are also discussed in more general terms in chapter 3.

The MCH block grant is used to provide health

services to mothers and children, including wellchild care and immunizations. It is up to each

State, however, to decide exactly which services

MCH funds are used for. Six States reported using

MCH block grant funds for immunization in 1985,

spending a total of $670,000 (512). Information

on MCH funding of other well-child care services is not available,

PHHS block grant funds are used to provide

comprehensive public health services, including

well-child care and immunization. Each State retains its own decisionmaking authority over how

the funds are distributed for the various services

(512). Eight States reported using PHHS block

grant funds for immunization in 1985, spending

a total of $730,000 (512). Information on PHHS

funding of other well-child care services is not

available.

Medical services provided in the Head Start

program include a complete examination, including vision and hearing tests, identification of

handicapping conditions, immunizations, and a

dental exam. In 1985-86, 96 percent of the children enrolled in Head Start had completed all of

the required immunizations and 97 percent of the

children enrolled had completed medical screening, including all of the appropriate tests (675).

CHCs and MHCs are part of the Federal primary care program administered by the Bureau

of Health Care Delivery and Assistance, an organizational component of the Health Resources

and Services Administration. The goal of CHCs

is to provide primary health care, including wellchild care and immunizations, to medically undeserved areas. MHCs provide primary health

care, including well-child care services, to migrant

and seasonal farm workers and their families.

For Indian children, IHS provides both wellchild care and immunizations. IHS has been very

successful in immunizing American Indian and

Alaska Native children. In 1982, it achieved its

goal of immunizing 90 percent of these children,

attaining the Federal target level set by the 1977

Childhood Immunization Initiative, and it has

maintained that level ever since (513).

Access to Well= Child Care: Children’s

Immunization Status

There is very little evidence on the use of wellchild care services in various segments of society.

A study based on the Rand health insurance experiment (see ch. 3) found that 7 percent of infants had received no well-child care in the first

18 months of life, only 45 percent had received

three doses of polio and DTP vaccines, and 60

percent had received the MMR vaccine (389);

however, this study was based on a very small

sample size (97 subjects). Another study based on

the 1980 National Medical Care Utilization and

Expenditure Survey found that privately insured
Chapter 6—Well-Child Care ● 1 4 1

individuals “rarely use preventive services at the

rates indicated by medical guidelines. Only HMO

enrollees are likely to use services at medically recommended levels” (45).

The most direct evidence on the use of wellchild care services pertains to children’s immunization status. Immunization, of course, is only one

component of well-child care. Although it is relatively easy to report on children’s immunization

status, data on immunization status do not necessarily reflect children’s access to the whole array of well-child care services. At least in certain

groups of children, though, a lack of immunization—the most clearly cost-effective well-child

care service—implies poor access to other wellchild services.

The following discussion examines U.S. children’s access to immunization services and assesses the immunization status of those children.

The areas covered include the U.S. objectives for

childhood immunization levels, the present immunization status of U.S. children, comparison

to other industrialized countries, and gaps in access to immunization among American children.

Variations in Children’s Immunization

Status by Age

What level of immunization in a population is

enough? The minimum level necessary to maintain herd immunity (the level of immunity that

must be attained to prevent epidemics of vaccinepreventable diseases in a specific population)

varies for each childhood disease. In general, if

a high percentage (80 to 90 percent) of a population is immunized against a disease, there is little

likelihood that the disease will be introduced into

the population and infect the unimmunized individuals. For tetanus, there is no herd immunity;

therefore, immunization of the entire population

is necessary for complete protection.

In December 1980, the U.S. Public Health Service laid out the following two objectives as national goals for 1990:

1. that at least 95 percent of children in licensed

day-care centers and kindergarten through

grade 12 be fully immunized, and

2. that at least 90 percent of children have their

basic immunization series by age 2 (679).

A November 1986 midcourse review of the Nation’s progress towards these goals found that the

immunization status of U.S. children in the 1980s

is better than it has ever been before (716).

The goal of immunizing 95 percent of U.S. children in licensed day-care centers and in kindergarten through grade 12 will probably be achieved

by 1990. Immunization levels for school-age children for the 1984-85 school year were 88 percent

or higher (716). Immunization levels for schoolentry-aged children (5- and 6-year-olds) have consistently been in the 91- to 94-percent range

throughout the 1980s, very close to the 1990 target level of 95 percent (693) (see table 6-6). This

high degree of success is primarily due to the fact

that all States have laws requiring proof of immunization prior to school entry (49). Reported

immunization levels for children in licensed daycare centers are also nearing the target level of

95 percent. In 1985-86, according to the Licensed

Day Care Center Facilities Immunization Survey,

day-care centers reported that 93 percent or more

children had had their basic immunization series

(590).

In contrast, immunization levels for U.S. children at 2 years of age are well below the 1990 objectives and have shown little progress since

1980.24 With the exception of DTP immunization

levels for 3+ doses, the immunization levels for

2-year-olds are well below the 1990 target of 90

percent (see table 6-7). In 1985, just over one-half

of 2-year-olds had had four or more doses of DTP

as recommended by ACIP’s schedule. From 1979

to 1985, immunization levels among 2-year-olds

rose the most for the mumps vaccine (which had

the lowest level to begin with); immunization

levels for rubella vaccine among 2-year-olds actually declined slightly (see table 6-7).

24The best available national data for this age group comes from

the U.S. Immunization Survey conducted by the Census Bureau for

CDC. The total sample for the survey is based on the respondents

recall, and there is a subsample based on the respondent referring

to an immunization record as the source of immunization history.

The subsample constitutes approximately one-third of the total sample (146),
142 • Healthy Children: Investing in the Future

— —

Table 6-6.–Percentage of School-Entry-Ageda U.S. Children Immunized, 1980/81 to 1985/86

Percentage immunized by year

Vaccination 1980}81 1981/82 1982/83 1983/84 1984/85 1985/86

Polio (3+ doses) . . . . . . . . . . . . 95 ”/0 -

960/o 97% 97 ”/0 97 ”/0 960/o

DTP (3+ doses). . . . . . . . . . . . . 96 96 96 97 97 96

Measles . . . . . . . . . . . . . . . . . . . 96 97 97 98 98 97

Mumps . . . . . . . . . . . . . . . . . . . . 92 95 96 97 97 96

Rubella . . . . . . . . . . . . . . . . . . . . 96 97 97 98 98 97

All vaccinesb . . . . . . . . . . . . . NA NA 91 93 94 93

Abbreviation: DTP = diphtheria, tetanus, and pertussis vaccine

NA = not available

aFive. to six-y ear.olds

b T he percentages shown ,n this line represent the weighted average of the indlv{dual vacc{ne percentage, but It may be an Unrepresentative samPle because not

all States reported overall percentages

SOURCE U S Department of Health and Human Serwices, Publtc Health Service. Centers for Disease Control, unpublished data from the U S School Entry Immun!za.

!Ion Survey, 1980/81 .1986, Atlanta, GA, 1987

Table 6-7.—Percentage of 2-Year-Old U.S. Children

Immunized, 1979 and 1985

Percentage immunized by year

Vaccination 1979 1985

Polio (3+ doses) . . . . . . . . 76.30/o 76.70/o

DTP (3+ doses) . . . . . . . . . . 82.1 85.8

(4+ doses) . . . . . . . . . . 53.6 55.7

Measles. . . . . . . . . . . . . . . . . 80.8 81.7

Mumps . . . . . . . . . . . . . . . . . 70.1 78.9

Rubella . . . . . . . . . . . . . . . . . 80,0 77.3

Abbreviation: DTP = diphtheria, tetanus, and pertussis vaccine

SOURCE U S Department of Health and Human Services, Public Health Service, Centers for Disease Control, unpublished data from the U S Im.

munization Survey, 19791986, Atlanta, GA, 1987

The United States has significantly lower immunization levels for infants than several other

industrialized countries have. The percentage of

infants (0 to 1 year of age) in the United States

who are fully immunized against DTP (37.4 percent) is less than one-half the percentage in the

United Kingdom (84 percent), Canada (80 percent), Sweden (94 percent, DT only), France (95

percent), Spain (97 percent), Italy (99 percent, DT

only), and Israel (95 percent) (723,765).

Why has the United States been so successful

at achieving the school-age immunization objectives, yet less successful with the preschool age

population? In contrast to school-age children,

preschool children lack a universal point (e.g.,

school entry) at which immunization can be required. Day care is the most common point of

access for immunization in preschoolers, and most

States have already enacted laws that require

proof of immunization in order to attend day care

(686). However, five States do not have such requirements and five other States have no enforcement clause for the requirements that they do have

(686). And even in States where laws exist, their

effect is weakened by the fact that the requirements apply only to licensed day-care facilities,

which care for an estimated 20 percent of children under age 6 with working parents (the other

80 percent are in informal day care of some kind)

(526).

Variations in Children’s Immunization Status

by Race and Location

Although it is apparent that the United States

enjoys high levels of immunization as a whole,

though not as high as they should be for very

young children, considerable differences persist

with respect to race and geographic location. National survey data indicate that differences exist

between white and nonwhite as well as between

urban poverty areas and suburban and rural

areas.

Table 6-8 illustrates that whites have higher immunization levels than nonwhites in both the preschool and school-entry child populations. For

children aged 1 to 4 in 1985, the differential ranged

from as high as 16 percent for polio vaccination

to 10.9 percent for measles and rubella (see table

6-8). For children aged 5 to 6 in 1985, the range

was from 12.1 percent for polio (3+ doses) to 8.4

percent for DTP (3+ doses) (table 6-9).25 Immu2sThe figures for DTp and OPV (oral polio vaccine) in 5- and 6-

year-olds are the percentage of children with three or more doses,

the number used in the data as the minimally acceptable level for

immunity. In fact, however, three or more doses may or may not
Chapter 6—Well-Child Care ● 143

Table 6-8.— Percentage of 1- to 4-Year-Olds and

5- to 6-Year-Olds Immunized by Race, 1985

Percentage Immunized by race

All

Vaccine races White Nonwhite

1- to 4-year-olds:

Polio (3+ doses) . . . . 75.7 “/0 77,5 “/0 61.5 0/0

DTP (3+ doses ) 87.0 88.5 75,2

Measles a . . ., 76.9 78.1 67.2

Mumps a . . 75,5 77.1 62.7

Rubell a

a 

... . , 73,8 75.0 64.1

5- to 6-year- olds:

Polio (3 + doses) ., 87.3% 88.6 0/0 76.5 0/0

Polio (4+ doses) . 71,3 73.2 54.5

DTP (3+ doses) . , 93.4 94.3 85.9

DTP (4+ doses ) 85.1 86.6 71,8

Measle s

a 

. 89.0 90.0 80.0

Mump s

a 

. . . 88.7 89.7 80.4

Rubella a ., . . . 84,7 85.9 74.1 —

Abbreviation: DTP diphtheria, tetanus and pertussis vaccine

aMeasles mumps and rubella levels are not [dent lcal because some Stales do

not require vaccination agalost mumps and/or rubella

SOURCE U S Department of Health and Human Services Publlc Health Serv

Ice Centers for Disease Control unpublished data from the U S [m

mun!zatton Survey 1979 1986 Atlanta GA 1987

be an adequate cutoff, depending on when each dose is admlnlstered. The primary series of vaccination against polio has three doses.

The fourth booster dose may not be necessary if the child has not

followed the recommended schedule and received the third dose after

the fourth birthday (681). Four doses of DTP make up the primary

vaccination series, and the fifth booster shot is required unless the

fourth dose was received after a child's fourth birthday which means

that the recommended schedule was not toll owed. For a measure

of the percentage of children that are following the recommended

nization levels for nonwhites with 4 or more doses

drops considerably, as low as 54.5 percent for

OPV in 1985.

The geographical distribution of immunization

levels in 1985 are presented in table 6-9. Immunization levels in central cities are substantially

lower than in non-central-city regions for both

preschool age and school-entry age children. In

1985, 31 percent of preschoolers living in central

cities were not adequately immunized against polio; 30 percent against mumps. Almost one-fifth

of 5- to 6-year-old children living in central cities

have not received three or more doses of polio

vaccine, the minimally acceptable level for immunity. Nearly two-fifths of that group have not received the optimal four or more doses of polio

vaccine. Many illegal aliens living in central cities are unimmunized (287). The Immigration Reform and Control Act of 1986 (Public Law 99-

603) may bring these children into the public

health system and improve immunization levels

in central cities.

immunization schedule, therefore, it is appropriate t o look at those

who have received four or more doses of DTP and OPV. Although

it is possible not to follow the recommended schedule and still be

immune to disease, the highest degree of immunity achieved when

the recommended schedule is followed.

Table 6-9.— Percentage of 1- to 4-Year-Olds and 5- to 6-Year-Olds

Immunized by Place of Residence, 1985

Percentage immunized in SMSAs

Other –

Vaccine Central cities SMSA areas

1. to 4-year-olds:

Polio (3+ doses) . ... . . . . 68.9% 79,6 0/,

DTP (3+ doses),

Measle s

a

. . .

Mump s

a 

... .

Rubella a 

. .

5- to 6-year-olds:

Polio (3+ doses)

Polio (4+ doses)

DTP (3+ doses),

DTP (4+ doses),

Measle s

a

. ., .

. . . . . . . .

. . . . . . .

. . . . . . . . .

. . . . . . .

. . . . . .

. . . . . . . . .

. . . . . . .

. . . . . . .

. . . . . . . . . . . .

79.6

73.5

70.5

70.4

81.6 0/0

63.8

87.5

77.1

81.6

89.7

76,7

76.8

75.0

91.0 “/0

74.2

96.5

88.5

90.7

Mumps a . . . . 81.4 90.6

Rubell a

a 

... ... ... .. . 75.0 88.7

Percentage immunized

in non-SMSA areas —

75,9 ”/0

88,6

79,0

77.0

74.6

86.70/o

72,4

93,5

86.0

91,2

90,7

85.9

Abbreviations: DTP diphtheria tetanus, and pertussis vaccine SMSA Standard Metropolitan Statistical Area

aMeas[es mum ~5 and rubella levels are not Identical because some States do nOt require vaccination a9a~nst mum Ps and or

rubella

SOURCE U S Department of Health and Human Services Publlc Health Service Centers for Disease Control u npubllshed

data from the U S Immun (zatlon Survey 19791986 Atlanta GA, 1987
744 ● Healthy Children: Investing in the Future

The lower levels of immunization in central cit- were 80 outbreaks of measles, the largest occuries indicate a higher susceptibility to outbreaks ring in New York City (688). Despite the high

of vaccine-preventable diseases. New York City overall levels of immunization in the United

experienced outbreaks of rubella each spring from States, there is a need to close the gap in levels

1983 to 1985. There were 184 cases reported for between central cities and non-central cities to bet1985 (691). In the first 6 months of 1986, there ter control vaccine-preventable childhood diseases.

CONCLUSIONS

Of the components of well-child care examined

in this chapter, immunization is the one proven

to be cost-effective and cost-saving. A schedule

of well-child care visits that corresponds to at least

the recommended schedule for childhood immunization, therefore, is cost-effective and probably

cost-saving. Such a schedule would include only

7 well-child care visits for normal infants and children in the first 6 years of life rather than the 13

visits currently recommended by AAP.

Whether more well-child care visits than the

number required for childhood immunizations

would be cost-effective is unknown, because researchers have yet to be able to document the effectiveness of the nonimmunization aspects of

well-child care in terms of improved health outcomes. To formulate recommended schedules of

well-child care visits, AAP and other recommending

ing

bodies have relied on expert opinion regardthe effectiveness of nonimmunization components of well-child care (284). It may be that

well-child care has but a modest effect on health

outcomes that is undetectable by the research designs employed to date. Giving a child access to

a continuous source of medical care and providing support and reassurance for families of young

children are proposed as benefits of well-child

care. In the absence of clearer evidence regarding the effects of the nonimmunization aspects of

well-child care on children’s health outcomes, the

effects of these factors on children’s health are difficult to evaluate. Consequently, decisions regarding the appropriate number of well-child visits requires consideration of both the objective and

subjective factors,
Chapter 7

Prevention of Accidental

Childhood Injuries
CONTENTS

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....147

The Problem of Accidental Injuries. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .....147

Causes of Accidental Injuries in Children of Different Ages . ...............149

Social and Economic Differences in Accident Rates . . . . . . . . . . . . ............149

Injury Epidemiology and the Identification of Countermeasures .. ... ... ... ..150

Effectiveness of Prevention Strategies . . . . . . . . ..............................152

Persuasion/Education. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...............152

Regulation of Behavior . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...............154

Automatic Protection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..............157

The Costs of Accident Prevention . . . . . . . . . . . ..............................160

Federal Agencies Involved in Prevention Efforts . . . . . . . . . . . . . ................161

Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...........................163

Boxes

BOX NO. Page

7-A. Example of a Successful Strategy To Prevent Fatal Childhood Injuries

From Falls . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ................158

7-B. Federal Injury Prevention Assistance . . . . . . . ..................,........162

Figure

Figure No. Page

7-1. Attenuation of the Effect of a Public Education Program . . . . . . . . .........153

Tables

Table No. Page

7-1. Number of Accidental Fatalities in Children Under Age 15,

by Age Group and Type of Accident, 1984 . ...........................148

7-2. Preventing Motor-Vehicle/Child-Pedestrian Injuries:

Potential Targets for Accident Intervention. . . . . . . . . . . . . . . . .. ... ... ... ..150

7-3. General Countermeasures to Hazards: Examples of Their Application

to Two Specific Hazards . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..............151

7-4. Comparison of Child Safety Restraint Laws in 50 States and

the District of Columbia, June 1987 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .156
Chapter 7

Prevention of Accidental

Childhood lnjuries1

INTRODUCTION

Accidental injuries are the leading cause of

death in children after the first few months of life.2

In 1984, 7,850 children under age 15 died as a result of such injuries (713). The exact number of

children who are treated in emergency rooms or

hospitalized for accidental injuries is not known.

However, accidental and other injuries clearly account for a substantial proportion of the medical

care received by children in hospitals. Children

under age 15 make nearly 10 million emergency

room visits due to injuries each year, and about

1 in every 130 children each year is hospitalized

for injury (538). At current rates, about 1 of every

9 children born today will be hospitalized for injury before the age of 15. Although these statistics do include child abuse and self-inflicted injuries, the vast majority of injuries sustained by

children are accidental (38).

The prominence of injuries as a cause of death

and disability in children is largely due to society’s success in reducing the incidence of severe

‘This chapter IS based ]n part on a background paper on unintentional In]urles prepared for OTA by L,S, Robertson (538). OTA,

h{~wever, takes full responsibility for the use of that information

In this chapter and for the use of the phrase “accidental injuries ‘

rather than “unintentional in juries.”

‘To describe accidental injuries, many people prefer the label

“unlntentiona] injuries” because they believe that the term “accidental’ implies unavoidability, OTA has chosen to use the term “accidental injuries” for two reasons. One is that it is the term more

commonly used by the general public. The other is that many researchers in the field of child abuse argue that the term “unintentional injuries” does not in fact exclude all injuries due to child abuse,

because some child abuse is unintentional.

infectious diseases, not to an increase in injuries

themselves, In fact, many interventions to prevent and treat accidental injuries have met with

considerable success, and accidental deaths among

children under age 15 have been declining. Whereas

there were 11,736 accidental deaths among children under age 15 in 1975 (1 per 4,632 children)

(534), there were 9,703 such deaths in 1980(1 per

5,286 children) (452); and only 7,850 such deaths

in 1984 (1 per 6,606 children) (713).3

This chapter describes the magnitude of the

problem of accidental childhood injuries, the major causes of accidental injuries, the groups of children such injuries affect, and an epidemiological

model for examining the causes of these injuries

and conceptualizing interventions. The bulk of the

chapter considers the effectiveness of specific strategies in preventing accidental injuries. These strategies fall into three general categories:

1. persuasion/education,

2. regulation of behavior, and

3. automatic protection.

Finally, the chapter considers the costs of accident prevention and the role of the Federal Government in this area.

‘A small part of the decrease during this peri{~d ma}, be due tf~

the fact that the overall child population ~vas decl i n inx at the same

time.

THE PROBLEM OF ACCIDENTAL INJURIES

As a group, injuries (accidental and other) are

the leading cause of potential years of life lost before age 65 (685). In infants under age 1, injuries

are the second leading cause of death (after death

due to conditions present at birth); and in all other

children under age 15, they are the leading cause

of death (451). In 1984, as shown in table 7-1,

most of the accidental fatalities in children under

147
748 . Healthy Children: Investing in the Future

age 15 resulted from vehicle-related accidents.

Drowning and fires/burns were also prominent

causes of death among children in this age group.

More is known about fatal accidental injuries

than about accidents that do not result in death.

The fatality statistics in table 7-I are compiled

from death certificates and published by the National Center for Health Statistics (NCHS). As described in appendix K, there are five major national sources of accidental injury data, each with

limitations:

1. death certificates,

2. hospital discharge abstracts,

3. hospital emergency room reports,

4. national health survey data, and

5. traffic accident data.

None of these sources provides reliable national

estimates of hospitalization for injuries. Death certificates include information on the cause of death

and thus can yield injury fatality statistics such

as those in table 7-1. Similar national data on

hospitalizations by cause of injury, however, are

not available. Hospital discharge abstracts do provide information on what types of injuries patients

admitted to the hospital have (e. g., fractures,

burns), but these abstracts do not typically provide any information on injury causes (or even

information on whether injuries are accidental or

not). Emergency room data are collected consistently only for injuries associated with products

under the surveillance of the Consumer Product

Safety Commission (CPSC). And, similarly, neither health survey data nor traffic accident data

are both specific and comprehensive.

Even though there are no national data on hospitalizations for childhood injuries, there are some

State-specific data. Data from Massachusetts for

the year 1980-81, for example, indicate an annual

rate of hospital admissions due to injury of 7.7

per 1,000 children aged O to 19 and an emergency

room treatment rate of 216 per 1,000 children

(234). North Carolina has reported a similar injury hospitalization rate of 8 admissions per 1,000

children aged O to 19 in 1980 (554). These data

suggest ratios of about 45 hospitalizations and

1,271 emergency room treatments for each death.

Nationally, these figures imply that approximately

353,000 hospitalizations and nearly 10 million

Table 7.1 .—Number of Accidental Fatalities in Children Under Age 15, by Age Group and Type of Accident, 1984

Number of fatalities by age group

0-4 y r

Type of accident < 1 yr 1-4 yr Total, 0-4 yr 5-9 yr 10-14 yr Total, 0-14 yr

Vehicle-related accidents:

Motor vehicle accidents . . . . . . . . . . . 161 977 1,138 1,016 1,247 3,401

Person killed:

Motor vehicle occupant . . . . . . . . . . . . 115 349 464 289 420 1,173

Pedestrian . . . . . . . . . . . . . . . . . . . . . . 14 502 516 488 321 1,325

Pedal cycle occupant . . . . . . . . . . . . . 0 17 17 109 218 344

Motorcycle occupant ... . . . . . . . . . . 0 4 4 22 98 124

Other/unspecified . . . . . . . . . ... , . . 32 105 137 108 190 435

Air, rail, and water craft accidents. . . . 1 31 32 31 75 138

Other vehicle accidents . . . . . . . . . . . . . . 0 9 9 17 24 50

Non-vehicle-related accidents:

Fires and burns . . . . . . . . . . . . . . . . . . . . . 139 641 780 325 183 1,288

Drowning . . . . . . . . . . . . . . . . . . . . . . . . . . 70 556 626 229 265 1,120

Choking a. . . . . . . . . . . . . . . . . . . . . . . . . . 153 118 271 17 28 316

Firearms and explosives . . . . . . . . . . . . 0 39 39 69 190 298

Falls . . . . . . . . . . . . . . . . . . . . ... ... . 28 86 114 27 41 182

Poisoning . . . . . . . . . . . . . . . . . . . . . . . . . . 21 77 98 22 34 154

Medical accident. ... . . . . . . . . . . . . . . 40 31 71 11 9 91

All other . . . . . . . . . . . . . . . . . . . . . . . . . . . 225 249 474 151 187 812

Total fatalities . . . . . . . . . . . . . . . . . . . . 838 2,814 3,652 1,915 2,283 7,850

aDoeS riot Include smothering.

SOURCE National Center for Health Statlstlcs, Publlc Health Service, U S Department of Health and Human Services, unpublished data on accidental fatalities among

ch!ldren, 1987
Chapter 7—Prevention of Accidental Childhood Injuries ● 149

.

emergency treatments annually are due to childhood injuries. Approximately 4,700 children under age 17 experience bed-disabling injuries’ each

year (705).

Childhood accidents are very costly to society,

even after the tremendous social and emotional

costs of death and disability are excluded. NCHS

estimated that in 1980, injury and poisonings (accidental and nonaccidental) accounted for 13.3

percent of acute medical care costs for children

under age 17, or nearly $2 billion (479). Accidental

injuries probably account for most of this cost,

which does not include long-term care costs or

nonmedical costs.

A detailed study of accidental and other injuries among Massachusetts children aged O to 19

estimated that in 1982, the annual direct cost of

injuries for their hospital and emergency care

alone was $81.6 million (39). This figure implies

annual hospital and emergency care costs of $48

per child (in 1982 dollars). Physician and nonhospital acute medical care costs were not included in the study. For the approximately 67 million children aged O to 19 in the United States in

1982, $48 per year would translate into over $3.2

billion per year (in 1982 dollars).

Roughly 90 percent of the injuries in the Massachusetts study were accidental.5 Applying this

percentage to the above NCHS and Massachusetts

cost figures for all injuries suggests that national

acute care medical costs for accidental injuries

would be an estimated $1.8 to $2.88 billion (in

1982 dollars), These figures do not include all

acute costs and are several years old. A better

rough approximation of the present national acute

medical costs of accidental injuries in children,

therefore, is $2 to $3.2 billion each year. If longterm care costs were included, the estimated costs

of accidental injuries would be substantially

greater.

‘A bed-disabling injury is defined as an injury resulting in at least

one day during which a person must stay in bed.

‘Rough preliminary estimates suggest that approximate]}’ 2 to 3

percent of emergency room visits for in]ury and 10 to 1.5 percent

of hospl talizatlons were due to assaults and self-i nfllcted In] u ries

(38 ). The extent of misrecording the cause of ]njury ]< unknown,

but it seems reasonable to assume that 90 percent of all emergency

room and hospital Inpatient cost~ incurred by injured children

stemmed from accidental In]unes.

Causes of Accidental Injuries in

Children of Different Ages

As table 7-1 suggests, particular types of accidental deaths tend to cluster in specific age

groups. Death from choking, for example, is most

common in infancy. Deaths due to poisonings,

falls, and drownings are most common in preschoolers (ages 1 to 4). Deaths from firearms and

explosives are rare in very young children (under age 5), but are the third leading cause of accidental death in older children (ages 10 to 14).

Motor-vehicle-related deaths are fairly constant

across age groups under age 15, but the injured

party varies considerably across groups. Most infants killed in motor vehicle collisions are occupants of the vehicle, whereas preschoolers killed

in such collisions are likely to be pedestrians hit

by an automobile, and older schoolchildren are

often bicyclists.

The clustering of accident types in different age

groups reflects the fact that rates of specific kinds

of accidents depend substantially on a child’s stage

of growth and development (527). Infants and

toddlers are particularly susceptible to household

accidents associated with their increasing motor

development and drive to explore the environment, In contrast, accidental injuries in teenagers

over age 15 (a topic not addressed in this chapter) are often correlated with risk-taking behavior,

such as participation in contact sports and unsafe

driving practices. Boys have consistently higher

rates of accidental injuries than girls (41,527), but

researchers have generally resisted speculating on

the reason for this difference.

Social and Economic Differences

in Accident Rates

Social and economic differences in accident

rates also exist. One study of infant morbidity

found, for example, that infants with very young

mothers had significantly higher accident rates

than infants with older mothers (635). In general,

persons with lower incomes have higher injuryrelated mortality rates than wealthier persons

(527), perhaps in part because lower income people may lack the necessary education or resources

to modify their home and neighborhood environ-
150 ● Healthy Children: Investing in the Future

.

ments. One study found that fire-related deaths

in urban children were particularly strongly correlated with income (757). Low incomes are also

sometimes associated with isolated rural populations that may be exposed to greater than average hazards (farm machinery, poor roads, highspeed travel) and a lack of quick emergency response (527). A few particular types of accidents

(e.g., deaths due to drowning in private swimming pools) are more likely to occur in wealthier

populations than in lower income populations.

Injury Epidemiology and the

Identification of Countermeasures

The epidemiology of injuries’ has been approached in a manner similar to that used to characterize acute infectious diseases (527). In the case

of an infectious disease (e. g., malaria), a diseaseproducing agent (e.g., a malarial parasite) is transmitted by a vehicle (e. g., a mosquito) to a person (or other host), who then becomes infected,

Similarly, in the case of an injury, the agent of

the injury is transmitted by some vehicle to a person, who then becomes injured. The “agent” of

an injury is some form of energy, such as heat

or mechanical energy. (Drowning or other forms

of asphyxiation are caused by too little energy,

rather than by too much. ) The “vehicle” may be

a cigarette (causing a fire), a car, the water in a

swimming pool, a poisonous household cleaner,

or gravity (the vehicle for a fall).

“Injury epidemiology attempts to describe the characteristics of

injuries and the factors that contribute to them.

Injury epidemiology focuses on the full range

of factors affecting the injury before, while, and

after the injury happened that could have prevented it or reduced its severity. Once these specific factors have been identified, they may suggest interventions that can be employed before,

during, or after an event. A matrix such as that

shown in table 7-2 can be used to show potential

targets for intervention (239).

In identifying interventions to reduce accidental childhood injuries, surveillance research—i.e.,

research into how specific injuries are clustered

in time and space—is a potentially useful tool. In

the case of child pedestrian injuries, for example,

surveillance research could investigate where and

when the injuries most frequently occurred; what

the children were doing when they were injured;

the characteristics and conditions of the automobiles involved; the actions and conditions of the

drivers; and the medical response and treatment

available after the injuries occurred. The results

of such research might even suggest the areas most

susceptible to intervention (e. g., a specific intersection near a school where placing a crossing

guard could reduce injuries).

Countermeasures are usually based on considerably less information than that illustrated in

this example. Lack of detailed surveillance data

hinders both the identification of a cluster of accidental injuries and the evaluation of an intervention to decrease the number of such injuries

(58).

In a slightly different approach to identifying

interventions, Haddon identified 10 general counTable 7-2.—Preventing Motor. Vehicle/Child. Pedestrian Injuries: Potential Targets for Accident Intervention

Targets for intervention

Phases Human factors Vehicle factorsa Environmental factors

Before an accident . . . . Hazardous activity, such as Braking capacity of vehicles; Parked vehicles and other

playing in traffic condition of brakes obstructing objects

During an accident . . Conditions of children that Sharp objects and edges on Hard road surfaces and other

might increase trauma front of car; high bumpers objects; street designs that

damage (e.g., hemophilia) increase exposure to vehicles

After an accident . . . . . . First-aid abilities of Property damage (irrelevant to Rapidity of response and

bystanders injury) adequacy of emergency

medical system

aThe term .vehlc le factor~) ,” thl~ ~atri ~ ~efers to ~ “ehl~le i n the sense of an agent of [raflsrn!sslon rather than a mode of trWISpOrtatlOfl set? discu SSIO(l In teXt

SOURCE Office of Technology Assessment, 1988, based on a background paper by L S Robertson, “Childhood Injunes Knowledge and Strategies for Prevent Ion,”

prepared for Office of Technology Assessment, U S Congress, Washington DC, February 1987
termeasures applicable to a variety of hazards,

whether physical, chemical, or biological (238).

Table 7-3 lists these general countermeasures and

specific examples of countermeasures applicable

to two types of accidental injuries. All 10 general

countermeasures may not be applicable to every

injury type, but a systematic review of each may

suggest countermeasures that are potentially more

effective or efficient than traditional measures.

Various authors have used Haddon’s conceptualization of countermeasures to suggest numerous options for a wide variety of injuries (136,

167,240,424,533,535,618 ).

Although a general conceptual analysis such as

Haddon’s is useful for identifying potential interChapter 7—Prevention of Accidental Childhood Injuries • 151

—

ventions, it cannot be used to estimate the relative necessity, effectiveness, cost, or feasibility of

undertaking any particular option. In an area

where most drownings occur in rivers or oceans,

requiring fencing around private pools, for example, is likely to have little effect on drowning

deaths. Similarly, if most children who drown

know how to swim, increasing swimming education may be a relatively ineffective strategy. Furthermore, without adequate research on the effect of such training, there is no guarantee that

the training will not increase the total amount of

swimming and actually increase the number of

deaths. It is in answering these questions that surveillance research and other research on the effectiveness of various options find their utility.

Table 7-3.—General Countermeasures to Hazards: Examples of Their Application to Two Specific Hazards

Examples of countermeasures to address specific hazards

General countermeasure

1.

2.

3.

4.

5.

6.

7.

8.

9.

Prevent creation (or accumulation)

of hazard

Reduce amount of hazard

Prevent the release of the existing

hazard

Modify the release of the hazard

Separate hazard in time and space

from those to be protected

Place physical barrier between

hazard and those to be protected

Modify relevant basic qualities of

the hazard

Make that which is to be protected

more resistant to the hazard

Begin to counter the damage

already done by the hazard

10. Stabilize, repair, and rehabilitate the

object of the damage

Example 1: Preventing drowning

and submersion injury

Prohibit private, unsupervised

swimming pools

Reduce the number or permitted

depth of private, unsupervised pools

Teach all children to swim

Place sensors in dams and levees

to signal appropriate release of

water

Place playgrounds at a distance

from streams, lakes, or pools

Fence swimming pools; fence

playgrounds near streams, lakes, or

pools

Not applicable—water is not

modifiable in any acceptable way

Encourage children to exercise to

increase lung capacity

Place underwater lights in pools;

train lifeguards and parents in

resuscitation

Improve treatment and rehabilitation

services to near-drowning victims

Example 2: Preventing medication

Poisoning in small children

Reduce use of drugs: get rid of old

medications

Prescribe or package less

medication per bottle

Discourage medications in homes

with small chiIdren

Use coating on tablets to delay

absorption; allow time for treatment

Keep medications in high or locked

cabinet

Use child-resistant packaging

Make tablets too large for children

to swallow; make liquids very

u n palatable

Educate children regarding dangers

of medications

Educate the public regarding use of

keeping ipecac and activated

charcoal in every home

Train emergency personnel in

poison identification and treatment

techniques

SOURCES Modlfled from W Haddon, Jr , “On The Escape of Tigers An Ecolog!c Note, Technology Review 7244, 1970, L S Robertson Chlldh;od Injuries Knowledge

and Strategies for Prevention, ” paper prepared for Off Ice of Technology Assessment, U S Congress, Washington DC, February 1987 and P Steele and

D A Spyker “’Polsonlngs “ Ped C/IrI N Am 32(1) 77.86 1985
152 . Healthy Children: Investing in the Future

EFFECTIVENESS OF PREVENTION

There are three broad strategies for preventing

accidental injuries in children:

1.

2.

3.

In

Persuasion/education: persuading people to

increase their self-protection (e. g., through

education or reminders to use seatbelts).

Regulation of behavior: requiring people to

increase their self-protection (e. g., by passing laws requiring the use of seatbelts).

Automatic protection: providing automatic

protection from injury through product or

environmental design (e.g., by designing automobiles so that a person is automatically

seatbelted when in the vehicle) (451,531).

terms of the matrix in table 7-2, all of these

strategies focus on the period either before or during an accident, rather than after an accident,7 In

general, the first two strategies target human factors for intervention and are usually implemented

at the State or local level. The strategy of automatic protection, on the other hand, generally targets “vehicle” (i. e., transmission agent) factors or

large-scale environmental factors and can often

be implemented nationally. g

The following discussion examines the effectiveness of these three general strategies in the context of specific interventions to prevent selected

kinds of childhood injuries. An intervention, as

used here, is a way of increasing the use of a

preventive technology (e.g., a media campaign

to increase smoke detector use, or the establishment of an agency to regulate potentially injurious products). Assessing the comparative effectiveness of alternative strategies depends on the

effectiveness of the particular interventions, Such

assessment is complicated by the fact that the interventions themselves vary in effectiveness, and

by the fact that different strategies (e.g., education and regulation) may be combined in one intervention (e.g., a program that both teaches peo7Postevent environmental factors that can reduce the severity of

injury (e. g., rapid trained emergency response ) are not included in

the preventive strategies discussed here.

“Classification of interventions into three general preventive strategies is a useful way to think about interventions, but, of course,

a particular intervention may borrow from two or even all three

strategies. For example, a landlord could be required by law to

change a tenant’s environment,

STRATEGIES

ple how to install smoke detectors and requires

their installation).

The critical outcomes of an intervention are the

number of accidental injuries prevented and changes

in the severity of such injuries. But many evaluations of accident prevention programs are not

designed to capture these outcomes (or cannot attribute the outcome to the intervention). The necessary data may not be obtainable or may be prohibitively expensive; or, the target population for

the intervention may be so small that effects on

injuries cannot be detected or attributed to the intervention with any statistical significance (58).

Consequently, many studies report intermediate

outcomes (e.g., the installation of a safety device).

The problem of attributing critical outcomes to

the intervention employed is particularly acute for

educational interventions. Figure 7-1 illustrates the

effect of a public education program for preventing burns if two-thirds of the population at each

step in the education process went on to the next

step. Not all of those in the target population are

exposed to the educational messages, and not all

of those who are exposed actually comprehend

the messages. Even smaller numbers of people

change their behavior. The ultimate effect of the

program in reducing injuries would be expected

to be very small; it might be undetectable even

if the study were designed to measure it.

Persuasion/Education

Persuasion as a strategy to prevent childhood

accidents is the historical cornerstone of injury

prevention, but its success varies and is widely

debated. Although educational programs can be

relatively inexpensive and do not typically encounter the political resistance that regulatory

programs often do, they tend to have only modest effects at best. One major educational program

for older teens—driver education in public schools

—has actually increased the incidence of accidental injury (539).9 This experience suggests that sim91n Connecticut, when a driver education program was dropped

from nine school districts following the elimination of State funding for the program, licensure and crashes of 16- and 17-year-olds

in those nine districts, unlike districts that maintained the program
Chapter 7—Prevention of Accidental Childhood Injuries • 153

Figure 7-1.— Attenuation of the Effect of a

Public Education Program

I

Total target population n = 100

I

Those exposed to

educational messages n = 66

Those who

comprehend messages n = 44

Those who change behaviors

n = 29

Those whose new behaviors

persist over time

n = 19

I

Those who apply new

behavior to prevent injury

at moment of risk

n = 13

Those for whom

injury is prevented

or reduced as

a result of

applying behavior

at moment of risk

n = ?

SOURCE Adapted from E McLoughlin, C.J. Vince, A M Lee, et al , Project Burn

Prevent Ion Outcome and Implications, ” American Journal of Public

Health 72(3) 241-247, 1982

ilar educational programs for younger children

(e.g., swimming lessons) may not reduce injuries

if education results in increased exposure to a

hazard.

The effectiveness of persuasion as a strategy

often depends on the frequency of the behavior

that one is attempting to change. In general, the

more frequent the behavior that people must

change in order to protect themselves or their children and the greater the effort required to change

it, the less effective will be programs to persuade

them to do so (41,531).

Motor-Vehicle-Related Injuries

Before laws were passed requiring the use of

child restraints in automobiles, several programs

sought to increase voluntary use of this preventhrough local funding, declined precipitously (532). A Canadian

study found that motor vehicle crash rates of teenage drivers were

much more strongly correlated with age than with driver education and experience. Newly licensed 18-year-olds had roughly the

same crash rates as 18-year-olds with 2 years of driving experience.

both groups of 18-year-olds had much lower crash rates than newly

licensed 16-year-olds (535).

tive technology. Two studies showed some success. One, a controlled study of pediatric practices, found a modest short-term increase in the

use of child restraints among families whose pediatricians prescribed the restraints and demonstrated their proper use (523). In a second study,

mothers of newborns who were randomly selected

to receive a free child restraint used the restraints

more than both mothers who were given only

educational materials and those given neither information nor free restraints (522), The improvement was modest, about a 7- to 8-percent increase

in use compared to the control group.

Attempts to reduce child pedestrian injuries

have generally focused on teaching children

appropriate pedestrian behavior (or to avoid

crossing streets altogether) (235). Although some

studies of these interventions indicate that children acquire pedestrian skills easily (774), others

are more cautious. One such study used model

cars and roads to teach children pedestrian skills.

After training, less than half the children remembered to look for turning cars, and a substantial

number of children (half the 6-year-olds and 25

percent of 9-year-olds) did not remember to stay

in the crosswalk. On the positive side, an education program in three cities resulted in a 20- to

30-percent reduction in child pedestrian injuries

involving children darting into the street (509).

This program used film and television spots to

teach children to stop and look for moving vehicles.

Fire-Related Injuries

The wide variation in outcomes that can result

from different persuasive strategies is well demonstrated by programs to prevent fire-related injuries (although presumably other factors entered

into the outcomes as well). In one experimental

program, pediatricians counseled families regarding the importance of smoke detectors. The counseled group increased the proportion of correctly

installed detectors by 41 percent, while the uncounseled control group did not change behavior

(429). In Missouri, a community awareness program using media, school, and group presentations succeeded in decreasing burn deaths by an

apparent 43 percent (although probably not all

of the decrease was due to the education program)
154 . Healthy Children: Investing in the Future

(197). A community awareness program in two

Massachusetts communities, on the other hand,

increased self-reported knowledge of preventive

actions but had no detectable effect on the number of burns (416).

A Baltimore, Maryland, program to increase

smoke detector use gave free detectors to people

who requested them. In a study of 231 people randomly selected from among the 3,720 recipients,

investigators found that 92 percent of their detectors were actually installed, and 88 percent

were operating correctly 4 to 9 months later (217).

Furthermore, the recipients were highly concentrated in areas of the city with the greatest fireinjury rates.

Other Home Injuries

Many injuries, particularly to very young children, occur at home. But “safety-proofing” homes

has proved difficult to do (134). The fact that an

educator may be trying to change many behaviors

and environmental factors simultaneously (e. g.,

storage of hazardous products; use of window

locks; lowering of water heater settings) may contribute to reduced impact of the message and a

lower probability of compliance (134).

In one program aimed at reducing home injuries associated with 10 categories of household

items, a prepaid health plan furnished parents

with information regarding appropriate use and

storage of these hazardous items at the time of

a pediatric health care visit (135). In a followup

telephone call, parents claimed to have made

many of the items inaccessible to children. An onsite inspection of homes, however, showed no

difference in access to hazardous items compared

to access in a control group of families who had

received no information.

In contrast, a Massachusetts home inspection

program that used family counseling at the time

of a sanitary code inspection to educate parents,

with the inspectors actually installing some safety

devices themselves, showed significant improvements in reduction of household hazards in the

inspected homes when compared with homes in

a control group (191).

Pediatricians are a common source of safety

education for parents, although most pediatricians

actually spend little time in injury prevention

counseling (521). An American Academy of Pediatrics program known as TIPP (The Injury Prevention Program) encourages pediatricians to

educate parents about accident prevention by providing the physician with a schedule for introducing injury topics to families and with materials

on these topics suitable for general distribution.

When pediatric counseling is extensive, it can

sometimes have an effect. In a group of families

where parents were given written materials regarding falls, were counseled by a pediatrician,

and were exposed to reminders at each visit, falls

occurred in 10 percent of infants during the subsequent year compared to 17 percent in a comparison group that did not receive the messages

(355). In another study, families who were counseled by pediatricians regarding six categories of

household hazards had significantly fewer hazards apparent at followup than families in a control group (51).

Poison information centers are a longstanding

and effective intervention to prevent serious injury (100,178). Their primary purpose is to reduce

the severity of poisoning injury by providing information and assistance to parents after a suspected poisoning. Educating parents regarding the

use of these centers has been shown to decrease

inappropriate use of hospital emergency rooms

(loo).

Regulation of Behavior

If changes in behavior are effective in preventing injuries, but education is only partially successful in changing behavior, then requiring behavioral change may be more effective. Many

accident problems, however, are not well suited

to a regulatory strategy (e.g., proper storage of

household poisons). And since the essence of the

regulatory approach is that people’s voluntary

choices may be contrary to the ideals of public

health, regulation of behavior raises issues regarding the relative importance of individual freedom

V. public health and public dollars. Still, regulating behavior has been very effective in increasing

the use of several technologies, most notably child

restraints in automobiles and smoke detectors.

The effect of laws and administrative rules, like

the effect of persuasion, depends to some degree
Chapter 7-- Prevention of Accidental Childhood Injuries • 155

on the frequency of the required behavior. Also

important are the public observability of the behavior, the degree to which the behavior is sanctioned by the community, and the ability to enforce the law.

Motor-Vehicle-Related Injuries

The gradual implementation of individual State

laws requiring infant safety restraints in automobiles has provided an opportunity to compare behavior in those States, before and after the laws

were implemented, with behavior in States without such laws. Tennessee was the first State to

pass such a law (in 1977); it required all children

under the age of 4 in parent-owned automobiles

to be restrained in an infant or child seat unless

they were traveling in an adult’s lap. (This exception to the law was later removed. ) In the first

3 years after Tennessee’s law was implemented,

restraint use by children under the age of 4 increased from 8 to 28 percent (753). Fatalities to

children in this age group declined by about 50

percent between 1978 and 1983, in parallel with

increased enforcement of the law (130). The decrease in fatalities was greater than expected given

the observed increase in use of restraints, so factors other than the use of restraints were probably at work as well.

By 1984, all 50 States had enacted laws requiring the use of safety restraints for children in automobiles (29). Several States have, like Tennessee, reported impressive increases in the use of

child restraints and decreases in child mortality

following implementation of the laws (231,577,

753). 10 No national estimate of injury reduction

due to the cumulative effect of child safety restraint laws is available. Undoubtedly, however,

these laws contributed to the 36-percent decline

in motor vehicle occupant deaths among children

under age 5 between 1980 and 1984 (234,713).

Whether as a result of laws or increased consumer awareness, observed use of child safety restraints in automobiles in the United States has

increased substantially over the past few years.

The National Highway Traffic Safety Administration (NHTSA) reports that use of restraints

“’Again, wme c~f the decrease ]n m(lrtalit} may be due to [act~~rs

(~t her than rest r~ 1 n t 1 a m’s ~ 3 I

Infant seats have contributed to substantial reductions

in motor-vehicle-related injuries to children,

among children under age 5 more than tripled between 1981 and 1986—from 22.8 percent in 1981

to 75.8 percent in 1986, based on a 19-city observational survey. Furthermore, the percentage of

young children who were correctly restrained increased from 17 to 67 percent of all observed children during this period. Engineering improvements that have made child safety restraints easier

to use may have contributed to the increase in correctly used restraints (29).

Still, there is considerable room for improving

child safety restraint laws. As shown in table 7-4,

many States require safety restraints in automobiles only for very young children. Altogether,

38 States have no restraint requirements for children over age 5 (and many States do not require

restraints for children over 3 or 4) (719). Most

other States have general seatbelt laws that require

persons other than very young children to be restrained; a few States do not require seatbelts for

adults but do require older children to wear them

(719). Laws covering only certain ages and exempting certain vehicles may fail to prevent a substantial number of avoidable deaths. One analysis of motor vehicle occupant fatalities in very
156 . Healthy Children: Investing in the Future

Table 7-4.–Comparison of Child Safety Restraint Laws in 50 States and the District of Columbia, June 1987

Year

State effective

Alabama . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1982

Alaska . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1985

Arizona . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1983

Arkansas . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1983

California . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1983

Colorado . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1984

Connecticut . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1982

Delaware . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1982

District of Columbia . . . . . . . . . . . . . . . . . . . . . . . . 1983

Florida . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1983

Georgia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1984

Hawaii . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1983

Idaho . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1985

Illinois . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1983

Indiana . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1984

lowa . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1985

Kansas . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1982

Kentucky . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1982

Louisiana . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1984

Maine, . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1983

Maryland . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1984

Massachusetts ..... . . . . . . . . . . . . . . . . . . . 1982

Michigan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1982

Minnesota . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1983

Mississippi . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1983

Missouri . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1984

Montana . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1984

Nebraska . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1983

Nevada . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1983

New Hampshire . . . . . . . . . . . . . . . . . . . . . . . . . . . 1983

New Jersey . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1983

New Mexico . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1983

New York . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1982

North Carolina . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1982

North Dakota . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1984

Ohio . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1983

Oklahoma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1983

Oregon . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1984

Pennsylvania . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1984

Rhode Island . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1980

South Carolina . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1983

South Dakota . . . . . . . . . . . . . . . . . . . . . . . . . . . 1984

Tennessee . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1978

Texas . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1984

Utah . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1984

Vermont . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1984

Virginia. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1983

Washington . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1984

West Virginia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1981

Wisconsin . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1982

Wyoming . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1985

Existence of

Age required general belt law

Age required to be in covering older Selected

to be restrained safety seat children? comments

Under 3

Under 6

Through 4

Under 5

Under 4

Under 4

Under 4

Under 4

Under 6

Under 6

Under 4

Under 4

Under 4

Under 6

Under 5

Under 6

Under 4

Under 40”

Under 5

Under 12

Under 5

Under 12

Through 4

Under 4

Under 2

Under 4

Under 4

Under 4

Under 5

Under 5

Under 5

Under 11

Under 10

Under 6

Through 5

Under 4

Under 5

Under 16

Under 4

Through 12

Under 4

Under 5

Under 4

Under 4

Under 5

Under 5

Under 4

Under 5

Under 9

Under 4

Under 3

Under 3

Under 4

Through 4

Under 3

Under 4

Under 4

Under 4

Under 4

Under 3

Under 4

Under 3

Under 3

Under 4

Under 4

Under 3

Under 3

Under 4

Under 40”

Under 5

Under 4

Under 3

Under 5

Through 4

Under 4

Under 2

Under 4

Under 2

Under 1

Under 5

Under 5

Under 5

Under 5

Under 4

Under 3

Under 3

Under 4

Under 4

Under 1

Under 4

Through 3

Under 4

Under 2

Under 4

Under 2

Under 2

Under 5

Under 3

Under 1

Under 3 

Under 2

Under 3

No

No

No

No

Yes

Yes

Yes

No

Yes

Yes

No

Yes

Yes

Yes

Yes

Yes

Yes

No

Yes

No

Yes

No

Yes

Yes

No

Yes

Yes

No

Yes

No

Yes

Yes

Yes

Yes

No

Yes

Yes

Yes

No

No

No

No

Yes

Yes

Yes

No

Yes

Yes

No

No

No

—

—

a,b,d

—

a,b

b—

a

—

d

—

—

a,b

a,d

—

d

a,c,d

a,b

—

a,d

—

d—

d

—

—

a,b,d

—

—

d

—

d

d

d

d

b

d

d

—

d

d

—

a

d

d

d:

d

b

KEY TO COMMENTS

a—Law applies only to parents and legal guardians.

b—Restraint required for child of specified age or less than 40 pounds.

c—Kansas law applies only to children riding in the front seat

d—State has upgraded its original child restraint law This table reflects those revisions

SOURCE US Department of Transportation National Traffic and Highway Safety Administration, unpublished data on child restraint laws. Washington, DC, June 1987

and July 1, 1987
young children (ages O to 5) concluded that in

some States, up to 43 percent of deaths occurred

in children who would not have been covered under restraint laws as of 1984 (636).

The evidence regarding the role of enforcement

in improving the effectiveness of restraint use is

somewhat conflicting. A few studies of specific

enforcement efforts have found that such efforts

had little additional effect (535).

study of seatbelt use found that

highest rate of compliance in the

which Texas authorities attributed

forcement efforts (518).

Fire-Related Injuries

—. ,- . .

However, one

Texas had the

Nation, a rate

to vigorous enThe presence of a properly installed and functioning smoke detector is associated with large reductions in the number of deaths from residential fires (415). A national survey found that the

proportion of households with smoke detectors

increased from 22 percent in 1977, to 46 percent

in 1980, to 67 percent in 1982 (722). In specific

cases, legislation requiring the installation of

smoke detectors in private residences has been

associated with decreased deaths. In Montgomery

County, Maryland, where smoke detectors are required by law in all residences, the number of

working detectors is greater (and the number of

residences without detectors smaller) than in

nearb y (and demographically similar) Fairfax

County, Virginia, which does not have such a

law. Furthermore, after the law was enacted, fire

deaths declined more rapidly in Montgomery

County than in Fairfax County (415).

Other Injuries

Regulation has proved successful in preventing

drownings associated with children entering unsupervised swimming pools. The annual poolassociated fatality rate in Honolulu, Hawaii,

where fences and childproof gates around pools

are required, is approximately one-third that of

Brisbane, Australia, which has a similar climate

and pool-to-household ratio but no fencing requirement (480).

Bicycle helmets have been proposed as a potential new target for regulation. In 1984, 344

young children died from collisions between

motor vehicles and pedal cycles (bicycles and

tricycles) (see table 7-1). In addition, an estimated

582,000 emergency room visits by children were

attributable to bicycle-related injuries in 1985

(667). Approximately 14 percent of motor-vehicle/

bicycle collisions result in head injuries to the cyclist (190). These figures imply that the use of bicycle helmets might substantially reduce severe

injury resulting from bicycle falls and collisions,

although valid studies of the relationship between

helmet use and bicycle-related injuries do not exist. Helmet use is uncommon among children. An

Arizona study found that less than 2 percent of

Tucson children commuting to school by bicycle

wear helmets (745). To OTA’s knowledge, the use

of bicycle helmets is not required in any State or

municipality in the United States.

It is difficult to separate the effectiveness of regulation alone from the effectiveness of the accompanying education and enforcement. A conscious

combination of the three applied to a specific

problem, however, can be extremely effective.

Box 7-A describes the successful application in

New York of a combined strategy to reduce fatal

injuries from falls out of windows.

Automatic Protection

Providing automatic protection avoids the need

for individuals to alter their behavior; it requires

only a one-time change that does not depend on

altering behavior. An airbag installed in an automobile, for example, does not require the individual to “buckle-up” every time he or she gets

in the automobile. Automatic protection can be

brought about not only by regulating products

but also by eliminating hazards in the environment (e. g., dangerous intersections). The design

of automobiles, children’s products, and medication packages are areas where automatic protection has been widely and successfully implemented

to reduce injuries.

For automatic protection to be successful, the

manufacturers and producers of potential hazards

must be aware of and use technical strategies to

reduce the hazardous characteristics of the products. In some cases, a private entity or the government itself can reduce a hazard through environmental changes, such as by providing better
158 . Healthy Children: Investing in the Future

Box 7-A.—Example of a Successful Strategy

To Prevent Fatal Childhood injuries From Falls

An effort by the New York City Health Department illustrates the effect that can be obtained by combining good surveillance research,

a simple and effective preventive technology, and

an intervention that combines persuasive and

regulatory strategies. An investigation of 201 fatal falls, conducted between 1965 and 1969, revealed that 61 percent of fatal falls in children

under age 15 and 85 percent of those in children

under age 5 were falls out of windows. Furthermore, 96 percent of the fatal falls occurred in

three of the five boroughs of the city (Bronx,

Brooklyn, and Manhattan).

The most feasible technical approach to addressing this problem was identified as the installation of barriers over windows. A campaign was

launched in high-risk neighborhoods to persuade

parents or landlords to install such barriers (607).

Eventually, the Health Department issued regulations requiring landlords to install the barriers

whenever they were asked to by tenants. The

number of children’s deaths due to fatal falls

from windows declined dramatically as a result

—from 30 to 60 per year in the mid-1960s to 4

in 1980 (55).

After a while, as families moved and children

were born in new families, the number of fatal

falls from windows increased. In July 1986, the

city changed the regulation. It now requires landlords to install barriers in windows in buildings

where there are children under age 11, regardless of whether a parent has requested the barrier.

street lighting or installing a traffic signal. Reduction of hazards associated with private products

can sometimes be accomplished without regulation if consumers are discriminating enough to

choose items that are safer (and sometimes if they

are willing to pay more as well). Where such

voluntary changes are insufficient, government

regulation may be employed to force all manufacturers to meet some standard of safety. Uniform regulation can ensure that producers who

want to make their products safer are not placed

at a competitive disadvantage when safety features increase production costs, and that consumers need not (or cannot) trade off safety and

cost .

Motor-Vehicle-Related Injuries

Attempts to reduce automobile injuries have included both product and environmental changes.

The Motor Vehicle Safety Act of 1966 (Public Law

89-563) required automakers to include certain

safety features in 1968 and subsequent model

cars. ll Automobile safety regulations are administered by NHTSA.

Estimates of the effects of these standards, based

on comparison of fatalities associated with vehicles to which the standards did or did not apply,

indicate approximately 15,000 fewer deaths per

year (in all age groups) in the early 1980s than

would have occurred without the standards (536).

Some of the continued reductions in automobileassociated deaths observed in the 1980s can probably be attributed to the continued attrition of old

vehicles that did not meet the standards. The effect of the standards on death rates of children

alone has not been estimated.

Automatic restraints (airbags or automatic seatbelts) are a current area of controversy among industry, consumer groups, and government. Such

restraints are now provided in a few car models

and are currently scheduled to become mandatory by 1990 unless at least two-thirds of the U.S.

population resides in States with mandatory seatbelt use by that time.

Other possibilities for improvement also remain. For example, many vehicles still have protrusions such as knobs and tapered dashboards

that can cause injury to the faces, heads, and

chests of individuals during crashes or sudden

braking (752). One study found that 12 percent

of children’s injuries in motor vehicles occurred

in noncrash braking or swerving (4).

Street and highway improvement can also significantly affect vehicle-associated deaths in all

age groups—adults as well as children. For example, deaths due to crashes at railroad crossings de-

: I The safety features included shoulder belts, energy-absorbing

steering assemblies, interior padding, seat integrity, and side running lights, among others. Subsequent standards were imposed for

hoodlatch, brake fluids, and head restraints (1969); child seating

systems and power-operated windows (1971 ); retread tires and flammability of interior materials (1972); side door and roof strength

(1973); one-piece lap and shoulder belts (1974); rear-end fuel system integrity and windshield zone intrusion (1976); and, most recently, eye-level brake lights (1986).
Chapter 7—Prevention of Accidental Childhood Injuries ● 159

clined by 52 percent between 1974 and 1984, at

least in part as a result of railroad crossing improvements brought about by the Highway Safety

Act of 1973 (133). Vehicle-associated deaths can

be further reduced by such measures as improved

road-striping and installation of energy-absorbing

materials at selective roadside sites where crashes

are likely to occur (357,766,767). Better street design in areas of high-density housing holds potential for reducing the number of child pedestrian

deaths (235,528). Federal grants to the States for

road construction and site modification to reduce

crash incidence and severity are administered by

the Federal Highway Administration.

Changes in right-turn-on-red laws and speed reduction are two examples of legal interventions

that have been suggested to decrease motor-vehicle-related injuries. A study of motor vehicle accidents after the implementation of right-turn-onred laws found that the number of child pedestrian injuries was 30-percent higher after the laws

were in place, and that most of the increase took

place in urban areas (778).

Speed reduction, through enforced speed limits

or limited top speed capacity in automobiles, has

been widely cited as a way to decrease fatalities

(444,535). Recent legislation (Public Law 100-17)

permits States to raise speed limits on rural highways to 65 mph. There is evidence that rural areas

had higher automobile fatality rates than other

areas even before this legislation (43). Future

studies can evaluate whether higher legal speed

limits in these areas further increase fatality rates.

Injuries From Toys and

Other Consumer Products

Toys and other products intended for use by

children are subject to voluntary product safety

design (by manufacturers) and to consumer product regulation administered by CPSC. That Commission was created in 1972 (Public Law 92-573)

and has the authority to promulgate mandatory

safety standards for any consumer product that

poses an “unreasonable risk” of injury or illness.

(The Commission does not have jurisdiction over

foods, drugs, tobacco products, firearms, boats,

aircraft, or motor vehicles. ) In extreme cases,

CPSC can ban products from the market (15

U.S. C. 2052).

The statutes that are administered by CPSC

contain wording directing particular attention to

products used by children, making this organization the Federal agency most directly involved in

regulating children’s products. Bicycles, for example, were one of the first major products for

which CPSC developed standards (241 ). The

Commission tested 277 toys and children’s products with suspected hazards during fiscal year

1985; 58 percent of the tested products failed to

comply with CPSC standards.

The implementation of “childproof” caps on

certain drugs and household chemicals is a major success story in product regulation’s effect on

child safety. Child poisoning deaths from aspirin declined 80 percent between 1965 (the year that

manufacturers voluntarily adopted container caps

that were difficult for children to remove) and

1975 (137). The Poison Prevention Packaging Act

of 1970 (Public Law 91-601) resulted in further

packaging standards, implemented by CPSC between 1972 and 1980. Reported ingestions of the

regulated products by children under age 5, measured from the year that a given product was regulated to 1983, declined from between 40 and 90

percent, depending on the product (668). Nonetheless, over 60,000 unintentional] ingestions of prescription medications by children under age 5 were reported to poison control centers in 1985 (694).

Household solvents, corrosives, and caustics continue to result in a child hospitalization rate of

about 5 to 12 per 100,000 children each year for

each category of product (645), or an estimated

3,000 to 7,500 children per product type.12

CPSC has been the subject of considerable recent controversy. During the 1980s, the Commission has emphasized voluntary rather than mandatory industry standards for unsafe products

(622). It has been criticized not only for a lack

of mandatory standards for what are perceived

as substantial problems (538) but also for its use

of cost-benefit calculations when considering

product regulation (406) and for its alleged lax enforcement of existing standards (596).

“The Consumer Product Satet} Commission (CPSC) is not the

only Federal regu Iatory agency’ Involved in the regulation of po i -

sonous products. The Food and Drug Administration, for example, has promoted poison educational materials and has required

warning labels on both prescription and over-the-counter drugs,
160 • Healthy Children: Investing in the Future —

Recent products with which CPSC has been in- the time of a public petition, the Commission has

volved include proposed regulation of all-terrain chosen to rely on voluntary compliance of manvehicles and hot water heaters. In the former case, ufacturers to set temperature settings at levels

CPSC’s own database has documented a dramatic sufficiently low to prevent scald burns (506). Two

rise in injuries, and the Commission is still debat- products associated with substantial numbers of

ing the appropriate regulatory policy (407). In the injuries—cigarettes (causing fires) and firearms—

case of hot water heaters, addressed by CPSC at are not within the jurisdiction of CPSC (538).

THE COSTS OF ACCIDENT PREVENTION

There is very little published information on the

costs of accident prevention programs to government agencies (e. g., a State health department)

or to producers and consumers. What little cost

information exists is largely in the area of Federal regulatory interventions, and it is very controversial.

One study of the effects of Federal regulation

on automobile costs, for example, concluded that

the cumulative costs of all safety regulations (after accounting for “learning curve” efficiencies)

had added approximately $491 to the cost of manufacturing an automobile (120). According to the

researchers, approximately two-thirds of regulatory costs were eventually passed on to consumers

(120). This study is considered by some critics to

overestimate the costs of automobile regulation,

because the source of the study’s manufacturing

cost data was manufacturers, who have incentives

to make the costs of regulation appear high (537).13

In contrast to the automatic protection strategy that is the context of Federal regulation by

NHTSA and CPSC, behavior-modifying strategies—education and regulation of behavior—

tend to be implemented on the State or local level.

Many of the costs of educational programs are

often borne by State or local health departments.

The great advantage of educational interventions

is that they are rarely subject to political opposition. On the other hand, costs to individual

families—monetary or nonmonetary-often limit

‘ ‘Historically, for example, manufacturers have suggested that

adding airbags to automobiles would increase consumer costs from

$290 to $1,150 (738). Their own costs were estimated at S135 to $280

(1982 dollars). Some of the variation in estimates is due to estimates

of the volume that would be produced. The large ranges and apparently high anticipated markups for these and other passive restraint

systems, however, have suggested to some researchers that costs

may be inflated in order to discourage regulation (462).

the effectiveness of educational interventions. The

evidence on these interventions presented above

tends to suggest that educational programs are

more successful when the costs to the family are

low or minimized through the provision to families of free safety devices.

Interventions that regulate behavioral change

have many of the same costs and characteristics

as educational interventions, partly because they

still require the acquisition of a device or alteration of habitual behavior. They also usually involve education on some level, if only because

the political process often includes attempts to persuade the public (as well as legislators) regarding

the desirability (or undesirability) of the law. Passing a law tends to be more expensive if the law

is controversial, and the factors that would make

a requirement controversial can be the same barriers that might make an education-only intervention ineffective. For example, making bicycle helmets mandatory would probably be controversial,

because it would require consumers to purchase

helmets; to remember to use them each time they

ride bicycles; to monitor helmet use in their children; and to give up the freedom of choice not

to wear a helmet. Persuading people to wear helmets voluntarily might be difficult for all of the

same reasons except the last.

Enforcement imposes an additional cost on regulatory interventions, but it may well be worth

the expense because enforcement seems (at least

sometimes) to be an important component of the

increased effectiveness of regulation compared to

education. Some of the costs of enforcement can

be recovered through fines, but imposing a fine

merely transfers the cost from the enforcement

agency to the fine payer.
Chapter 7—Prevention of Accidental Childhood Injuries ● 161

Sometimes the costs of adherence to regulations

can be very great to consumers, For example, the

use of infant seat restraints could be required on

commercial aircraft just as it is in automobiles,

but the costs of such an intervention might be

more than simply the inconvenience and the cost

of the restraint. Infants are often permitted by

commercial airlines to travel free if they ride on

the lap of an adult. An intervention that required

parents to use restraints for their infants, therefore, would also require them to purchase an additional ticket (unless the airline had a policy requiring ticket purchase only if the flight were full).

Parents might perceive such a requirement as entailing a much greater cost than benefit, particularly if the marginal increase in safety is low.

In summary, most interventions to reduce accidental injuries in children involve some costs—

some monetary, some nonmonetary —borne either by governments or directly by people. The

nonmonetary costs of compliance with regulations, for example, may lead consumers not to

fully comply unless enforcement is rigorous and

sanctions are high. Although some nonmonetary

costs of compliance can be reduced through education that alters dangerous habitual behavior,

successful education programs can also be costly.

A full accounting of the costs of specific accident

prevention interventions to all parties (not just the

program costs) would enhance the development

of more cost-effective interventions.

FEDERAL AGENCIES INVOLVED IN PREVENTION EFFORTS

After a quiescent period, the Federal Government has shown renewed interest in injury prevention during the past few years. In addition to

the ongoing efforts of NHTSA and CPSC in motor vehicle and consumer product regulation,

there is now significant effort in several agencies

toward developing better surveillance systems,

promoting research into accident causes and prevention, and assisting States in the implementation of accident prevention programs. Some of

the activities of NHTSA, the Centers for Disease

Control (CDC), and other Federal agencies in

these areas are summarized in box 7-B.

For the most part, the different Federal agencies involved in funding specific programs and

projects have different foci. NHTSA has been particularly involved in child restraint projects. CDC,

with a recent increase in funding, is providing

grants for a wide variety of demonstration and

research projects and for three research centers;

these grants include prevention of injuries in all

age groups. CDC has also taken the lead in coordinating surveillance efforts. The Division of

Maternal and Child Health of the Public Health

Service funds demonstration projects on injuries

in children and provides program implementation

assistance. The National Institute for Child Health

and Human Development is focusing on background research into accidental injury.

Most injury demonstration programs are oriented, at least initially, at preventing accidental

injuries through behavior modification and are

implemented at the State or local level. The local

approach is a logical one for many types of accidents. The local environment may contribute to

accidents (e. g., high-density housing and child

pedestrian accidents), and prevention programs

may need to be tailored to local social characteristics.
162 ● Healthy Children: Investing in the Future

Box 7-B.—Federal Injury Prevention Assistance

The Federal Government’s primary involvement in the prevention of accidental childhood injuries occurs through the regulation of motor vehicles by the National Highway Traffic Safety Administration

(NHTSA) and the regulation of certain consumer products by the Consumer Product Safety Commission

(CPSC). In the past few years, however, as a result of increased interest and increased funding, there has

been a substantial increase in Federal agencies’ support of State and local accidental injury prevention activities. Some of the injury prevention assistance activities by NHSTA and other Federal agencies are outlined

below.

National Highway Traffic Safety Administration (U.S. Department of Transportation) .—In 1985,

NHTSA distributed $15.8 million in grant money to States for use in child safety restraint programs (538).

NHTSA grant money is also used to fund more general activities, such as alcohol countermeasures, emergency medical services, bus driver programs, and pedestrian safety programs,

A 1985 National Academy of Sciences report, Injury in America (451), heightened congressional interest in the prevention of injuries, and in 1986, Congress appropriated $10 million to NHTSA to carry out

the recommendations of that report. One of these recommendations was that the Centers for Disease Control (CDC) coordinate Federal injury prevention efforts. Consequently, NHTSA transferred nearly all of

this special appropriation to CDC. The language surrounding the appropriation specified that at least half

of the money was to be targeted to motor-vehicle-related injury, so NHTSA has worked together with

CDC in decisions regarding that funding (29).

Centers for Disease Control (Public Health Service) .-During the 1970s and early 1980s, CDC awarded

small contracts to States and other entities to develop injury control strategies for persons in all age groups.

(CDC awarded a total of approximately $765,000 during this period (538), ) In 1985, CDC increased the

number of staff committed to accidental injury prevention projects from 3 to 14 people (566). In early 1986,

CDC received the nearly $10 million in injury prevention funds from NHTSA described above, and the

agency consolidated staff from the intentional and unintentional injury divisions. With the $7.8 million

of this money allocated to extramural research, CDC has funded 5 injury research centers and 32 individual research project grants (566).

Division of Maternal and Child Health (Public Health Service) .–The Division of Maternal and Child

Health funds demonstration projects on various topics, one of which is accidental injury prevention. Until

1986, this agency was the most significant source of Federal funding for projects to prevent non-motorvehicle-related injuries in children. In fiscal year 1986, the Division of Maternal and Child Health spent

just over $1.5 million of approximately $71.7 million in total grant funding on prevention of accidental

injuries in children (about 8.5 percent of grant funds) (268). Grant topics during fiscal year 1986 included

statewide injury prevention programs in Massachusetts, North Carolina, and Wisconsin, and a six-State

New England cooperative injury prevention network (697). In fiscal year 1987, the Division of Maternal

and Child Health is providing a small amount of additional funding to support the implementation of ongoing injury prevention programs in eight States (268).

In addition to providing grants, the Division of Maternal and Child Health has produced a guide for

States on implementing accidental injury prevention programs. The Division is also joining with NHTSA

and CDC in funding a National Commission on Injury Prevention whose mission is to aid States in designing injury prevention programs.

National institute for Child Health and Human Development (NICHD) (National Institutes of Health).

—NICHD has only recently begun to devote substantial resources to injury research. The Institute held

a workshop on accidental injury research needs in September 1986, and it has since funded two projects

on injury research methods at a cost of $450,000 (564).

NICHD is now in the process of funding injury research, with the intention of focusing on basic mechanisms of injury, NICHD is also providing some funding to support enhanced injury data collection during

the upcoming 1988 Child Health Supplement to the National Health Interview Survey (564).
Chapter 7—Prevention of Accidental Childhood Inuries • 163

CONCLUSIONS

Although both numbers and rates of childhood

deaths due to injuries have declined, injuries remain the leading cause of death and hospitalization for children over the age of 1. The vast

majority of injuries in children are accidental. This

fact suggests that there is merit in giving prevention of accidental childhood injuries a high priority in the maintenance of children’s health.

The United States has clearly made some progress

toward reducing accidental injury fatalities in

children—and presumably nonfatal childhood injuries as well. Between 1975 and 1984, the country achieved a 33-percent reduction in accidental

fatalities among children under age 15. The decline in deaths from motor-vehicle-related injury

is a particularly important part of this achievement, accounting for one-third of the reduction—

approximately 1,400 lives saved in 1984 alone

(534,713).

Despite this progress, we are still remarkably

ignorant about many important facets of injury

prevention and program implementation. For instance, very little is known about the costs of

alternative preventive interventions (the most

startling fact about these costs is that they are

almost never discussed). Similarly, although there

is good evidence for the effectiveness of specific

interventions, there has been little study of the

underlying reasons why one educational intervention is effective and another is not; of the marginal benefits of additional preventive technologies or interventions; and of the relative costs

and effectiveness of alternative strategies.

This lack of information results in decisionmaking that may be more guess than calculation. How

much does it cost to give out free smoke detectors? How much does an educational program to

encourage their use cost? What about the costs

of requiring their installation and enforcing the

regulation with inspections? Which is more effective? Would requiring sprinklers be more effective than requiring smoke detectors? At what

cost? What are the marginal costs and benefits to

requiring sprinklers in addition to smoke detectors? How much education is needed to make either technology fully effective?

Automatic protection is probably the most effective preventive injury strategy in most instances,

because it requires no behavioral change on the

part of the consumer. Automatic protection often

allows the end users to make a one-time purchase

(e.g., an automobile equipped with airbags) but

to receive a certain amount of constant protection. The per-unit costs will tend to decline if all

products include the protection, and production

efficiencies result. Many motor vehicle-related injuries can be prevented by measures amenable to

Federal and State regulation, and indeed, such injuries have declined dramatically in parallel with

regulatory efforts, Product regulation has likewise

been an effective preventive measure. In some

cases, however, improved automatic protection

may have increasing marginal costs for each increment of added protection.

Strategies that require people to change their

behavior, occasionally or habitually, have been

generally considered less effective than automatic

protection. Regulation of behavior, which can be

enforced, is considered by most researchers to be

a more effective method of increasing safetyenhancing behavior than merely educating people regarding dangers and appropriate behaviors.

Neither education nor regulation is a one-time

cost; both require ongoing investments (into reeducation, enforcement, or both).

Still, it is difficult to discount education as an

important strategy to combat accidental injuries.

The literature suggests that the educator, the audience, and the existence of additional incentives

are all variables that can affect the success of

educational efforts to prevent injury. The disappointing results of many persuasive programs are

not failures to communicate: many such programs

do increase knowledge regarding dangers. Rather,

these programs are relatively ineffective because

they often encourage changes in frequent or

habitual behavior (behavior considered inconvenient by the parent or child). Education may

be an important component of regulatory strategies, both in encouraging the legislative process

and as a necessary background to acceptance and

proper use of required technologies (177).
164 ● Hlealthy Children: Investing in the Future

Rivara has suggested that 12 currently known

or available preventive interventions could, if

universally applied, reduce childhood deaths due

to injuries by 29 percent (528):

●

●

●

●

●

●

●

●

●

●

●

●

infant seat restraints in automobiles,

air bags for front seat motor vehicle occupants,

helmets for motorcyclists,

helmets for bicyclists,

expansion and enforcement of the Poison

Prevention Packaging Act,

barriers around swimming pools,

self-extinguishing cigarettes,

smoke detectors,

elimination of handguns,

knowledge of the Heimlich maneuver,

adherence to CPSC regulations, and

window bars in windows above the first

floor.

Other observers have promoted more widespread or mandatory application of such interventions as:

●

●

●

●

●

hot water heater temperatures of no more

than 120 degrees Fahrenheit,

stringent limits on the sales and use of allterrain vehicles

“no-right-turn-on-red” laws,

prohibitions on radar detectors,

maximum speed limits to car performance,

and other extensions of automobile or consumer product safety (538).

Rivara’s estimates of effectiveness rates are

limited by the existence of only a few sound evaluations of these interventions, The estimates thus

tend to be optimistic. Also, some of these interventions involve additional costs to society or substantial loss of personal choice, issues that need

to be taken into account when considering accident prevention policies. Nonetheless, this list of

currently available interventions illustrates that

progress in accident prevention need not wait.
Chapter 8

Prevention of Child Maltreatment
CONTENTS

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....................167

Defining Child Abuse and Neglect . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......167

Physical Abuse . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......................168

Physical Neglect . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .....................168

Psychological Abuse. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .................168

Psychological Neglect. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ................168

Sexual Abuse... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...................169

Estimated Incidence and Prevalence of Child Maltreatment ..... . .............169

Estimates Based on Official Reports of Maltreatment . .....................169

Estimates Based on Cases of Maltreatment Known to Professionals.. . .......170

Estimates of Parent-to-Child Violence Based on Household Surveys . .,......171

Estimates of Child Sexual Abuse.... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....171

False Reports of Child Maltreatment. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....172

The Causes of Child Maltreatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .......172

Theories About the Causes of Child Maltreatment . .......................172

Child-Related Risk Factors for Maltreatment. . ............................173

Parental Risk Factors for Maltreatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..173

Risk Factors for Child Sexual Abuse.... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 176

The Effects of Child Maltreatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......177

The Effects of Child Abuse and Neglect on Maltreated Children . ...........177

Financial Costs Attributable to Child Maltreatment . .................,....178

Effectiveness of Preventive Strategies and Programs . ........................179

Effectiveness of 19 Federally Funded Clinical Demonstration Projects . .......179

Effectiveness of Five Home Health Visitor Programs . .....................180

Federal and State Funding for the Prevention of Child Maltreatment . ........,184

Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .......................185

Tables

Table No. Page

8-l. Estimated Rates of Parent-to-Child Violence in U.S. Households, 1985.....171

8-2. Commonly Studied Risk Factors for Child Maltreatment . ................179

8-3. NCCAN Funding for State and Discretionary Grants,

Fiscal Years 1981-86 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..............185
Chapter 8

Prevention of Child Maltreatment1

INTRODUCTION

In the two decades since the publication of an

influential article entitled “The Battered Child

Syndrome” (322), there has been an explosion of

concern in professional and lay media with the

problem of child maltreatment. The early 1970s

brought revisions in the laws mandating the reporting of and broadening the definition of child

abuse. The National Center on Child Abuse and

Neglect (NCCAN) was established as part of the

U.S. Department of Health and Human Services

by the Child Abuse Prevention and Treatment Act

(Public Law 93-247) in 1974, and in the past decade, it has become the focal point within the Federal Government for addressing the problem of

child maltreatment.

Despite concern with the problem, however,

reported cases of child maltreatment in this country have increased markedly. Between 1976 and

1985, reports of child maltreatment increased by

180 percent (657). In 1985, 1.9 million cases of

child maltreatment were reported to child protective services agencies (657).

This chapter considers several aspects of the

problem of child maltreatment. It examines, in

turn:

● the definitions of child abuse and neglect,

● estimates of the incidence and prevalence of

child maltreatment,

● the causes of child maltreatment,

● the effects of child maltreatment,

● the effectiveness of strategies intended to prevent child maltreatment, and

● Federal and State funding for the prevention

of child maltreatment.

In considering the effectiveness of preventive

strategies, the focus of the chapter is not on the

activities of child protective services agencies that

work in conjunction with the legal system to prevent reoccurrences of child maltreatment. (These

agencies may also seek to treat the consequences

of maltreatment, an important topic outside the

purview of this report. ) Rather, the focus of this

chapter is primarily on innovative preventive programs that could augment the traditional child

welfare/legal system.

DEFINING CHILD ABUSE AND NEGLECT

Only a modest consensus regarding the definitions of child abuse and neglect exists in the United

States. Different States, professional disciplines,

and public agencies have defined these phenomena

in varying ways (205). All 50 States and the

District of Columbia have laws defining child maltreatment and mandating that professionals working with children report suspected cases, Typically, however, the laws are rather vague, leaving

a good deal open to interpretation. In general,

professionals agree that an act by a parent or

caretaker constitutes maltreatment if it involves

direct harm or intent to injure, including intentionality without physical injury (e. g., locking a

child in a dark closet).

Different forms of child abuse and neglect are

frequently categorized in the following groupings:

●

●

●

●

●

physical abuse,

physical neglect,

psychological abuse,

psychological neglect, and

sexual abuse.

Generally speaking, child abuse implies an act

of commission that

an act of omission

that, the way these

harms a child, child neglect

that harms a child. Beyond

terms are defined frequently

167
168 ● Healthy Children: Investing in the Future

varies, depending in large measure on who is

defining the terms and for what purpose.

Physical Abuse

Physical abuse is the infliction of physical injuries, although some definitions also include violence that is potentially injurious. Cigarette burns,

inflicted fractures, and belt marks are unambiguous examples of physical abuse.

Some individuals use less stringent definitions

of physical abuse than others. A pediatrician, for

example, might consider corporal punishment of

a child to be physically abusive and therefore decide to counsel the child’s parents about other disciplinary strategies. A social worker for a State

child protective service agency, on the other hand,

might require scattered bruising to substantiate

a case report. A district attorney interested in

prosecuting an abusive parent would probably become involved only if a child sustained serious

bodily injuries.

Physical Neglect

Physical neglect involves the failure to meet a

child’s fundamental needs (e. g., needs for appropriate nutrition and clothing) or noncompliance

with critical medical care. According to one observer, “Leaving an infant in a crib, without

changing his diapers and without giving him any

contact or stimulation, represents both physical

and emotional deprivation: the infant will probably have rashes and sores and might well be developmentally delayed” (65).

Although professionals and lay persons differ

in their definition of optimal child rearing, they

generally agree when defining inadequate care

(499). In some cases–for example, in homeless

families—a child may lack some fundamental necessities despite the efforts of the child’s parents.

Cases such as this, in which it is difficult to assign culpability to individuals, are typically not

construed as abuse or neglect.

Psychological Abuse

Psychological abuse consists of parental behavior that is thought to damage the child’s emotional and psychological well-being (192,319). Examples of a psychologically abusing parent are

a rejecting parent who repeatedly communicates

his or her angry feelings toward a child or a parent who places inappropriately high expectations

and demands on a child.

Again, the definition of psychological abuse depends on the purpose of those defining it. Child

mental health professionals might consider certain caretaking behaviors to be abuse if those behaviors damage the optimal psychological development of a child. Child protection agencies, on

the other hand, would typically require that a

deleterious impact on a child be demonstrated and

be attributable to the abusive behavior before the

case is substantiated. A causal relationship is usually very difficult to prove. Consequently, psy

-

chologically abused children who receive attention from child protection agencies tend to

represent flagrant cases, often involving other

forms of abuse and neglect.

Psychological Neglect

A lack of attention to the important psychological needs of a child constitutes psychological

neglect (750). An infant who is upset might require the affection and attention of a parent or

caregiver for comfort; a parent who provides affection appropriately fosters a sense of security

and trust in the infant. But if a mother is suffering from postpartum depression, for instance, she

may have difficulty responding to her baby’s cues.

As a result of psychological neglect, her infant

may withdraw and feed poorly, eventually developing the syndrome known as “failure to thrive. ”

Before they will substantiate a case of psychological neglect, child protection agencies typically

require, as they do in the case of psychological

abuse, that a child exhibit behavior or health

problems attributable to deficiencies in care. Child

protection agencies’ operational definition of neglect is only partly based on whether a child’s

needs are not being attended to as measured

against accepted community standards. Generally, these agencies become involved only in cases

of psychological neglect that are severe or that

involve other forms of maltreatment in addition

to psychological neglect.
Chapter &—Prevention of Child Maltreatment ● 169

Sexual Abuse

Researchers, clinicians, and the legal system

have defined sexual abuse in varying ways. The

researchers Finkelhor and Araji defined it as

“sexual contact that occurs to a child as a result

of force, threat, deceit, while unconscious, or

through exploitation of an authority relationship,

no matter what the age of the partner” (172).

Another researcher, Russell, defines sexual abuse

broadly to include behavior that does not involve

physical contact (556).

Clinicians generally apply somewhat different

criteria in defining sexual abuse. Although there

seems to be agreement that when physical force

and contact are involved in a sexualized manner,

sexual abuse has occurred, Finkelhor’s and Araji’s

broad definition of sexual abuse is difficult to apply in the clinical setting, Furthermore, at least

in adolescents, evaluating whether a sexual experience has been “unwanted” can be difficult, although some researchers argue that there is little

justification for applying different standards to

adolescents (769). Sexual abuse that does not involve physical contact is seldom reported to health

professionals, aside from rare situations where

overt symptoms are apparent and the child or

family seek assistance.

Child protective services agencies generally accept as cases only more severe cases of sexual

abuse and tend to ignore the vast majority of cases

of noncontact sexual abuse. The legal system applies the strictest criteria, generally focusing on

those cases where physical signs of sexual abuse

are evident.

ESTIMATED INCIDENCE AND PREVALENCE OF

CHILD MALTREATMENT2

Estimating the incidence and prevalence of child

maltreatment with any precision is very difficult.

Estimates vary depending on whether they are

based on official reports of child maltreatment to

child protective services agencies, on cases known

to professionals who deal with abused and neglected children, or on household surveys. Furthermore, the estimates based on these sources are

probably too low, but how much too low is hard

to say.

Estimates Based on Official Reports

of Maltreatment

Each year since 1974, the American Association for Protecting Children (AAPC) has estimated the incidence of child abuse and neglect on

‘Incidence is the frequency of new occurrences of a disease or condition within a defined time interval in a defined population. The

Incidence rate is the number of new cases of a specified disease or

condition divided by the number of people in a population over

a specified period of time, usually I year. Prevalence is the frequency

of existing cases of a disease or condition within a defined time interval in a defined population, The prevalence rate is the number

of existing cases of a disease or other condition in a defined population at a particular time or over a specified time period,

the basis of official reports of child maltreatment

to State child protective services agencies nationwide (23,24). Although not all States and jurisdictions contribute data on individual cases,

AAPC surveys all States for information on total number of reports, data sources, and characteristics of the reporting systems. Other recent

data on reported child abuse and neglect are available from a national survey conducted by the

House Select Committee on Children, Youth, and

Families in the 50 States and the District of Columbia (657).

Even as assessments of the reported incidence

of child abuse and neglect, the AAPC and House

Select Committee studies have several limitations.

First, different States use different definitions of

child abuse; some States, for example, do not report emotional abuse. Second, some States report

maltreatment by the number of families reported;

hence, a conversion factor must be used to obtain an estimate of the number of reported children. Third, reports by most States are not an unduplicated count of children; hence, an increase

in the number of reports may represent either an
170 ● Healthy Children: Investing in the Future

increase in the number of children or additional

reports for the same number or even fewer children. Fourth, States differ in the degree to which

reports are substantiated (i. e., investigated and

the abuse or neglect confirmed); in 1985, the substantiation rate ranged from a high of 67 percent

in Oregon to a low of 25 percent in Iowa and Virginia (657). Fifth, States differ in the degree to

which total reports represent all referrals; most

States have some screening prior to reporting.

Sixth, many States have not collected data by type

of maltreatment; thus, for example, data to compare the reported incidence of sexual abuse, physical injury, and neglect are available from only

19 less-populated States for the entire period from

1981 to 1985 (657).

Despite their limitations, the following estimates from AAPC and the House Select Committee on Children, Youth, and Families are presented

as key estimates of reported incidence of child

maltreatment in the United States (24,657):

In 1985, an estimated 1.9 million child maltreatment reports were made in the United

States, a rate of 30.2 reports per 1,000 children under 18 years of age (assuming no multiple reports per child).

Between 1976 and 1985, the number of

reports of child maltreatment in the United

States increased by 180 percent, despite a

slight decline in the total child population.

Between 1984 and 1985, the number of reports increased 9 percent.

Reports of sexual abuse increased more than

reports of other categories of child maltreatment. Among the 34 States providing complete information for the period, reports of

sexual abuse of children increased 23.6 percent from 1984 to 1985; by comparison, reports of physical abuse and neglect of children increased 6.6 percent and 5.0 percent,

respectively.

More recent but less complete State data on reported child maltreatment are available from a

survey of State reports for 1986 (448). In 1986,

according to preliminary estimates projected from

data in 34 reporting States (representing 62 percent of all children), there were 2 million reports

of child maltreatment nationwide, an increase of

approximately 6 percent over the number of reports recorded during 1985.

In the 34 reporting States in 1986, the survey

found 727 reports of children’s deaths due to

maltreatment (448). This figure represents an increase of 37 percent over the number of deaths

reported in 1984 (448). If nonreporting States had

the same rate of deaths as reporting States in 1986,

child maltreatment caused at least 1,200 children’s

deaths nationwide that year.

Actually, the number of children’s deaths due

to maltreatment in 1986 is probably far in excess

of the estimate of 1,200 derived from official

reports. Estimating the actual number, however,

is inherently difficult for two reasons. One is that

children’s deaths may be coded as due to a variety of causes, and it is often difficult to determine

that a given death is due to maltreatment, particularly in cases involving infant deaths and in

cases of possible neglect. Second, there is evidence

that the number of fatal child abuse cases reported

to child protective services is much below the

number suggested both by law enforcement data

(717) and vital statistics child homicide data (300,

302).

Estimates Based on Cases of

Maltreatment Known to Professionals

In an effort to improve on estimates of child

maltreatment based solely on officially reported

incidents, NCCAN sponsored a national study on

the incidence and severity of child abuse and neglect to count the number of cases of child abuse

and neglect known to professionals during a 1-

year period (677). The NCCAN study used a stratified random sample of 26 counties. Data were

obtained from the professional staff of child protective services agencies, as well as from the staff

of other agencies throughout each county—local

police departments, county public health departments, public schools, short-stay hospitals, and

mental health facilities. These professionals were

asked to identify any possible cases of child maltreatment known to them, using very clear guidelines to identify behavior as maltreatment. A final determination on whether child maltreatment

had actually occurred was made by the NCCAN

investigators.
Chapter 8—Prevention of Child Maltreatment ● 171

For the United States as a whole, the NCCAN

investigators estimated, a total of 1.2 million cases

of child abuse and neglect were suspected by

professionals for the year May 1979 through April

1980. About 652,000 of these suspected cases met

the strict criteria developed by the study as constituting maltreatment .

3 Perhaps the most important finding of the NCCAN study, however, was

that only one-third of the cases of maltreatment

known to professionals were reported to child

protection agencies (677).

Estimates of Parent= to= Child Violence

Based on Household Surveys

Table 8-1.— Estimated Rates of Parent-to-Child

Violence in U.S. Households, 1985a

Rate per 1,000

Type of violence children age 3-17

Minor acts of violence:

1. Threw something . . . . . . . . . . . . . . . 27

2. Pushed, grabbed, shoved. . . . . . 307

3. Slapped or spanked . . . . . . . ., 549

Severe acts of violence:

4. Kicked, bit, hit with fist . . . . . . . . . . . 13

5. Hit, tried to hit with something . . . . 97

6. Beat up . . . . . . . . . . . . . . . . . . . . ., . 6

7. Threatened with gun or knife ... 2

8. Used gun or knife . . . . . . . . . . . . . . . . 2

Violence indices:

Overall violence (l-8). . . . . . . . . . . . . . 620

Severe violence (4-8) . . . . . . . . . . . . . . 107

Very severe violence (4, 6, 8). ... . 19

Using a household survey to estimate the incidence of parent-to-child violence within families,

Straus and Genes estimated in 1985 that 10.7 percent of children in U.S. households experienced

severe acts of violence and 1.9 percent experienced

very severe violence (625). The Straus and Genes

study was based on a national probability sample of 1,428 households with two adults and at

least one child. Each household was surveyed by

telephone. Respondents were asked to reflect on

the past year and to indicate how conflicts between family members were resolved. The instrument used in the Straus and Genes study was the

Conflict Tactics Scale, a reasonably valid and

reliable instrument for measuring family violence.

The scale provides a list of strategies ranging from

“discussing the problem” to “using a gun or a

knife” and thus allows an assessment of the degree of reasoning, verbal aggression, and physical aggression used in resolving conflicts. The

results of the study with regard to rates of parent-to-child violence in U.S. households are presented in table 8-1.

The Straus and Genes study has several limitations. First, the data were based on self-reports

of respondents to anonymous telephone interviewers; social pressures may have led some individuals to deny their violent behavior, thereby

resulting in an underestimate of the incidence of

violence. Second, the study included only children between 3 and 17 years of age who were liv-

‘In most cases of physical neglect, for example, the stud}’ definitions required evidence of serious injury or impairment; in contrast,

It would be hoped that most child protective services agencies would

not require this degree of severity before they intervened.

aFor two-caretaker households with at least one child 3 to 17 years of a9e at home

SOURCE M A Straus and R J Genes, ‘Soc!etal Change and Change In Family

Violence From 1975 to 1985 as Revealed by Two National Survey s,’

Journal of Mamage and Farnlly, 48465479, 1986 Copyright (1986) by

The National Counctl of Family Relatlons, Falrwew Community School

Center, 1910 West County Road B , Suite 147 Rosevllle, MN 55113

ing with two adults over the age of 18. Because

it excluded two important groups of children at

high-risk for maltreatment—namely, children

under age 3 and children living with a single

parent—the study probably underestimates the incidence of parent-to-child violence.

In 1975, Straus, Genes, and Steinmetz had conducted a household survey similar to the one just

mentioned (626), A comparison of the two surveys indicated that while the overall level of violence remained stable in the 1975-85 period, the

amount of severe and very severe violence decreased substantially. From 1975 to 1985, the rate

of very severe parent-to-child violence declined

from 36 to 19 incidents per 1,000 children. This

decline cannot be attributed to methodological

differences between the two surveys. Rather, the

decline is probably due to the combination of an

increase in reluctance to report severe violence and

real changes in behavior (624). Although the decrease in severe violence is encouraging, an extremely high level of violence against children persists. The authors estimate that 1.5 million

children aged O to 17 in two-parent families were

subject to very severe violence in 1984 (624).

Estimates of Child Sexual Abuse

Sexual abuse appears to be the fastest growing

component of reported child abuse, rising from
172 ● Healthy Children: Investing in the Future

a rate of 0.09 reports per 1,000 children in 1976

to 1.6 reports per 1,000 children in 1984 (657).

More useful estimates are from studies of the

prevalence of child sexual abuse. Such studies survey adults about their childhood sexual experiences. Reported prevalence rates range from 6 to

62 percent throughout childhood for girls and

from 3 to 31 percent for boys (172). Using a very

conservative childhood sexual abuse prevalence

rate of 5 percent obtained from various community surveys, Finkelhor and Hotaling (173) estimate that something on the order of 150,000 to

200,000 new cases of child sexual abuse occur each

year.

False Reports of Child Maltreatment

Social workers screen out or fail to substantiate approximately 58 percent of case reports of

child abuse and neglect (24). Clear evidence of

maltreatment may be lacking either because no

maltreatment occurred or because an investigation was too limited to uncover it. In general, child

protective services staff are undertrained and

overwhelmed; while attempting to meet great demands with inadequate resources, they raise their

thresholds for accepting cases. Although some

reports of child maltreatment are certainly made

when no maltreatment has occurred, there also

seems little doubt that some cases screened out

or not substantiated by child protective services

are, in fact, cases of maltreatment.

On the other side of this issue is the possibility

of increasing rates of falsely reported child abuse,

particularly sexual abuse (308). Some have

claimed that a number of false allegations are

made in the context of divorce. A recent survey

of domestic relations courts conducted by the

Association of Family and Conciliation Courts

and the American Bar Association found that the

courts are encountering a small but growing number’ of sexual abuse allegations. Nevertheless, “the

number of sexual abuse charges arising during divorce and/or custody/visitation disputes is small

in absolute number and as a percentage of all contested cases” (641). A study of suspected child

abuse cases reported in Denver between 1983 and

1985 found that only 6 percent of alleged sexual

abuse cases were based on deliberately false

reports (308). Thus, false reports are not likely

to be affecting the trends in reporting to any great

extent.

The problem of a small number of false or fictitious reports of child maltreatment should be

counterbalanced by what is probably a much

greater number of cases that remain secret within

the family and are never brought to the attention

of professionals. Clinicians have found that sexual abuse victims frequently delay disclosure of

their abuse for substantial periods, and many

probably never reveal their painful pasts. Given

the privacy of the family, it is inherently difficult

to determine that an event (i.e., an act of child

abuse) has occurred (267). This situation makes

it particularly difficult to measure the success of

maltreatment prevention programs.

THE CAUSES OF CHILD MALTREATMENT

Identifying the causes of child maltreatment is

difficult. Various theories have been used to account for the problem, and various risk factors

have been studied by researchers. As the following discussion indicates, however, for many of the

factors often thought of as contributing causes of

child maltreatment, the supporting evidence is either absent, minimal, or inconsistent.

Theories About the Causes

of Child Maltreatment

The researchers who first began to address the

problem of child abuse focused on the psychopathological traits of the child-abusing parent

(188,421,617). In some sense, this focus seems reasonable. One expects that no normal person

would deliberately hurt a child; hence, any person who does abuse children must suffer from

some kind of mental illness.

Other theories have also been utilized to explain

child abuse, including social learning theory, cognitive development theory, and environmental

stress theory. Social learning theory posits that

child abuse is learned behavior. Children who

have experienced abusive and violent childhoods

transfer this “learning” to their families of desti-
Chapter 8—Prevention of Child Maltreatment ● 173

—

nation. Cognitive development theory suggests

that many caretakers of children simply have not

learned what constitutes normal child development, reasonable expectations for children, and

what parental responses are appropriate. Environmental stress theory emphasizes that child abuse

results from stressful life conditions and events

outside the individual, including poverty, unemployment, social isolation, and a violent environment (459).

Each of these theories is consistent with one or

more of the many factors that are viewed as contributing to child abuse and neglect. Table 8-2

identifies a number of risk factors commonly studied by researchers in the field. No single theory

(or set of related risk factors), however, seems to

explain the diversity of maltreating families and

their circumstances. The risk factors for one kind

Table 8-2.—Commonly Studied Risk Factors for

Child Maltreatmenta

Individual-level risk factors: –

Age of child

Perinatal problems

Child’s health status

The “difficult” child

Age of parent

Parent’s history of abuse as a child

Parental intelligence

Parental psychopathology

Parental awareness

Parental perceptions of their child

Parental knowledge of child development

Disciplinary strategies used by parents

Family -level risk factors:

Stress

Single parenthood

Number of children

Spacing of children

Living conditions

Substance abuse

Family supports

A new baby

Other family violence and relationships

Community-level risk factors:

Community impoverishment

Social isolation

Societal-level risk factors:

Ethnicity

Attitudes toward violence

Attitudes toward children

Poverty

Unemployment

aSexual abuse excluded

SOURCE Adapted from H Dubowltz ‘Child Maltreatment (n the United Slates

Etiology, Impact and Prevent Ion prepared for the Off Ice of Technol

ogy Assessment U S Congress Washington, DC October 1986

of abuse may be quite different from the risk factors for other types of abuse. Sexual abuse, in particular, stems from different factors. Consequently, sexual abuse is discussed in a separate

section below.

Much of our current understanding of child

maltreatment is based on data from identified

cases. To the extent that these cases fail to reflect

the true phenomenon or only one part of it, this

“knowledge” is a misrepresentation. As shown below, a comparison of risk factors for child maltreatment derived from different data sources illustrates that many of these factors are artifacts

of the reporting system. Much of the research is

exploratory and descriptive, and many of the

studies use design methods that have major deficiencies (498).

Child= Related Risk Factors for

Maltreatment

An extensive review of research studies indicates that a child’s characteristics do not predict

child maltreatment (143). In fact, observed correlations between characteristics of the child and

maltreatment may reflect the results of maltreatment rather than its causes.

It does appear true, however, that very young

children are especially vulnerable to severe physical abuse. AAPC’s report on official child neglect

and abuse reports in 1984 indicated the following average ages: 7.3 years for all maltreated children; 5.3 years for children with major physical

injuries; 8.1 years for emotionally maltreated children (24). AAPC’s report for the year 1983 found

that 64 percent of abused children with major

physical injuries and 37 percent with minor ones

were under 6 years of age (23). Similarly, Straus,

Genes, and Steinmetz’s household survey of how

families resolved conflicts found that substantial

physical force was most likely to be used against

children under age 5 or against 15- to 17-year-olds

(626),

Parental Risk Factors for

Maltreatment

AAPC has consistently reported that the average age of perpetrators of child maltreatment is

about 31 years (24)—a figure that implies that
174 ● Healthy Children: Investing in the Future

many maltreating parents are older parents, not

just teenage mothers. A study in Georgia found

that teenage motherhood was a risk factor for being reported—i.e., a factor that contributed to

greater surveillance—but not additional risk for

child abuse (299).

There appears to be little support for the hypothesis that abusive parents are less intelligent

than other parents, despite its intuitive appeal

(613). Studies of parental perceptions of their children as well as parental knowledge of child development have yielded mixed or contradictory

results (143). If there is any relationship between

intelligence and maltreatment, it is probably with

neglect rather than abuse (148,613).

The data concerning drug and alcohol abuse in

child-abusing parents and their families remain

ambiguous. Some studies have reported an association (44), while others have failed to find any

difference between abusing and nonabusing parents in their drug or alcohol use (11,291). These

conflicting findings might be explained by the

differences in the assessment measures used. Clinical experience suggests that alcohol and drug

abuse is an important factor in domestic violence.

It is presumably difficult for the alcoholic or

heroin-addicted parent to care for a child adequately. Child neglect, if not abuse, must be a frequent concern.

Some researchers have suggested that the birth

of a new baby is an important source of potential stress, since family members need to adjust

(335,471). Many prevention programs have focused on this early period to support families

(222,588). The failure to establish early rapport

between parent and child, i.e., poor parent-infant

bonding, has been suggested as a contributor to

subsequent maltreatment (180). Experts have suggested that newborns who are separated from

their parents, and children who are not securely

attached to their parent, are at risk for maltreatment (180,200). Olds and Henderson recently

completed a review of controlled studies of this

topic (470). Although the results of the studies

were not entirely consistent, the reviewers concluded that it is unrealistic to expect a few extra

minutes or hours of contact between high-risk parents and their newborns to substantially alter the

reactions to stressful life circumstances over the

succeeding years (470).

It now appears that while the “bonding issue”

made a valuable contribution toward humanizing obstetric care, its critical importance has been

overstated. There are other opportunities for attachment to develop, and a problem with early

bonding is at most likely to be a modest contributor to subsequent maltreatment (586).

With respect to race and ethnicity, studies based

on reports of maltreatment made to child protective services agencies have shown the ethnic minorities, the less educated, and the poor to be

overrepresented (203,299). A study that only considered substantiated cases of child maltreatment

found that blacks had the highest rates, followed

by Mexican-Americans and whites (365). This result was supported by a secondary analysis of the

same data that controlled for social class and community characteristics.

A number of studies have documented that

minority groups and the poor are susceptible to

being labeled as maltreaters, largely because

of professional stereotypes and bias (199,466).

Straus, Genes, and Steinmetz’s national household

survey of family violence (626) found little difference between black and white families in selfreported rates of violence.

Four other parental factors are often mentioned

as possible risk factors for child maltreatment:

parental mental illness, single parenthood, history

of abuse as a child, social isolation, and poverty

and unemployment. Some of the evidence concerning each of these factors is presented below.

Parental Mental Illness

Early work in the field of child maltreatment

centered around parental mental illness, and several studies described the psychotic traits of childabusing parents (88,421,617). Later work, however, showed that most abusive parents were not

psychotic (608), and no single abusive psychological profile or pattern has been found to exist. Indeed, a British study of abusive parents found that

only 1 in 10 had a definable psychiatric condition, a rate comparable to the rest of the population (595). A review of studies comparing abu-
Chapter 8—Prevention of Child Maltreatment ● 175

sive and nonabusive parents did not find any

differences in underlying personality attributes or

traits “beyond general descriptions of displeasure

in the parenting role and stress-related complaints”

(761 ).

Single Parenthood

In 1984, 37 percent of the families reported for

child maltreatment—as compared with 23 percent

of all U.S. families with children under age 18—

had a single female as the head of the household

(24). Several studies have identified single parenthood as a significant risk factor for child abuse

(76,561). The problem with these studies, however, is that they failed to control for an obvious

correlate of single-parent households—namely,

poverty. It is likely that the mixed results of various studies are due to this uncontrolled factor.

It is also likely that case reporting rates are higher

for single parents because of biases in child protective services.

Parental History of Abuse as a Child

The intergenerational transmission of child

abuse has been the subject of a great deal of controversy. Generally, retrospective studies of the

parents of children currently identified as abused

have found a relatively high prevalence of parents who themselves had been abused as children

(202,226). No comparison groups have been studied, however. Furthermore, the view that “violence begets violence” has been challenged by Gil

and other researchers, who found that only 14

percent of mothers and 7 percent of fathers in

identified maltreating families had a history of being abused (11,202,203).

Prospective studies that have examined the

parenting practices of parents who were abused

as children are more helpful. In a 25-year longitudinal study, Miller and Challas found that 45 percent of persons abused as children were rated as

not abusing their own children; in contrast, 47

percent of persons who were not abused as children were found to have some potential for abuse

(427). Another study found that over 80 percent

of previously abused parents did not abuse their

infants (291).

Straus has reported interesting differences in the

transmission of violent behavior depending on the

age at which the children (now parents) were

physically punished, and by whom (623). H e

found that teenagers who were punished by their

mothers were less abusive of their offspring than

teenagers punished by their fathers. In addition,

Straus noted:

. . . parents whose fathers hit them as teenagers

have a child abuse rate which is one-third higher

than parents who were under equally high stress

that year, but who did not experience . . . violence directed against them as teenagers. The

difference between the effect of having been hit

by one’s mother versus by one’s father suggests

that violence by the father against a teenage child

is a more influential role model for violent behavior which the child will later display under

stress (623).

Of course, some portion of what appears to be

intergenerational transmission of violence may be

due to the continuity of poverty from one generation to the next—i.e., extremely poor children

are likely to head poor or near-poor families in

the next generation. Hence, it is necessary to control for this third factor in both the family of origin and in the family of destination.

Social Isolation

It is argued that social supports promote a sense

of identity, self-esteem, and physical well-being

and help the individual cope with stressful events

(74). In this context, it is not surprising that isolation has been considered to be an important contributory factor to child maltreatment (193).

Various studies have found that social isolation

and a lack of support networks play a role in

maltreating families (152,467,614,731). The correlation of single parent status and high residential

mobility with child maltreatment is often thought

of as additional indirect evidence in support of

the social isolation hypothesis. A recent critical

review of studies found, however, that there was

little evidence that lack of social support plays a

significant role in the origins of physical abuse

(575). That review indicated stronger evidence

that lack of social support characterized parents

who neglected their children, although it is diffi-
176 ● Healthy Children: Investing in the Future

cult to tell whether the social isolation is a cause

of the neglect or another manifestation of the poor

psychological resources of these families.

Poverty and Unemployment

In 1984, 48 percent of families reported to State

agencies for child maltreatment were receiving

public assistance (24). Numerous studies have

shown that the poor and minority groups are

treated differently from others by professionals

working in the child abuse field, and that this bias

is at least partly responsible for the increased identification and reporting of child maltreatment in

poor families (254,318,466). The argument that

follows from this position is that maltreatment is

underreported in middle and upper classes, and

that there is no true association between poverty

and actual maltreatment, only an association with

reported maltreatment.

Straus, et al.’s 1975 national survey of how conflicts were resolved in families that had not been

identified as maltreating argues otherwise (626).

A finding of that survey was that poorer families

had the highest rates of violence. Poor families

earning under $6,000 a year reported twice as

much violence as families earning over $20,000.

Still, there is the possibility that middle and upper income families were more reluctant than poor

families to disclose their violent behavior.

In a Georgia study of confirmed fatal child

abuse cases between 1975 and 1979, however,

children receiving Aid to Families With Dependent Children (AFDC) were four times more likely

to suffer fatal child abuse than children not receiving AFDC (301). Of the different forms of

child maltreatment, neglect appears most strongly

correlated with low socioeconomic status (206),

In one study, 57 percent of the neglect group,

compared to 19 to 27 percent of the other maltreating groups, relied on public assistance (582).

On balance, it seems reasonable to conclude

that although some poor people are unfairly reported for maltreatment (and some middle and

upper class families go undetected), there is an important association between poverty and child

maltreatment (484). It is important to recognize,

though, that most poor people do not abuse or

neglect their children.

Economic factors other than poverty have also

been found to be important. In a reanalysis of

Gil’s data, Light found unemployment to be the

most powerful predictor of child maltreatment

(381). A number of studies have documented an

association between areas with high unemployment rates and an increased incidence in child maltreatment (112,195,196). These findings are supported by Steinberg, et al. ’s longitudinal study,

which tested whether undesirable economic change

led to child maltreatment (620). In this study,

analysis of data over a 30-month period revealed

an increase in child abuse following periods of

high job loss, and this finding was replicated in

two metropolitan communities.

Summary of Evidence on Parental Risk

Factors for Child Maltreatment

The most important parental risk factors for

child maltreatment are those related to poverty

and unemployment and a history of abuse as a

child. Indeed, it may be that a history of being

abused as a child is related in part to past poverty and unemployment. Many of the other factors that are often thought of as contributing to

child maltreatment—parent-child bonding, ethnicity, parental mental illness, and single parenthood—do not seem to be important factors, particularly when social class is controlled.

Risk Factors for Child Sexual Abuse4

The causal underpinnings of sexual abuse are

quite different from other forms of child maltreatment, although some overlap exists. Several interacting contributory factors are responsible,

rather than single causes.

In an analysis of eight community-based random sample surveys, Finkelhor and Araji found

that 71 percent of all respondents who said they

were sexually abused as children were girls and

29 percent were boys (172). The median age of

onset of abuse of girls was consistently between

10 and 11 years. When the risk for each year of

age was calculated, a substantial increase occurred

at 6 years with an estimated risk of 1.49 percent

(i.e., 1.49 per 100 6-year-old girls are abused), and

4This section is largely derived from Finkelhor and Araji’s recent

book entitled A Source Book on ChiM Sexual Abuse (172).
again at age 10, with a risk of 3.76. For girls between 10 and 12 years of age, the risk of being

victimized is more than double the average rate

for all girls between 1 and 18 years.

Finkelhor and Araji’s review lists several studies

that reported an increased rate of sexual abuse

among women who lived without their natural

mothers or fathers at some time during childhood

(171,490,557). Four of six studies found the presence of a nonbiologically related father to be a

significant risk factor for abuse (170,230,557,763).

Chapter 8—Prevention of Child Maltreatment • 177

One study found that 2,3 percent of daughters

growing up with biological fathers had been sexually abused by them, as compared to 17 percent

of girls growing up with stepfathers (557). In addition, the nature of the abuse from stepfathers was

more severe and more violent.

Social class probably is not a significant factor

for sexual abuse (116,320,326). Studies have consistently found similar rates of sexual abuse for

blacks and whites (326,490,677),

THE EFFECTS OF CHILD MALTREATMENT

The effects of child maltreatment on children

can be physically and emotionally devastating.

Some of the direct effects of maltreatment on

abused and neglected children are discussed below. Also discussed are some estimates of the societal costs for medical and foster care of maltreated children.

Effects of Child Abuse and Neglect

on Maltreated Children

There is no typical abused child. There is also

no direct relationship between specific forms of

child abuse and specific developmental outcomes,

since an array of individual and environmental

factors account for the varying effects of abuse

on children. (Many followup studies of maltreated

children have found that such children have an

increased incidence of social and emotional problems, but it is often difficult to discern whether

these problems preceded or resulted from the maltreatment. ) Despite the variety of outcomes, however, the effects of abuse on maltreated children

are generally negative.

Many maltreated children have no overt evidence of physical injury. For example, in 1984

three-quarters of reported children had no injuries (24). As medical expertise and sophistication

in the field of child maltreatment increase, however, more subtle injuries are being diagnosed.

This development is well illustrated by the application of new knowledge in the clinical detection

of sexual abuse (157,606,764), Almost any traumatic physical injury—e.g., injuries to the eye,

fracture of the teeth, and rupture of an intraabdominal organ—can result from physical maltreatment (151). The most extreme outcome, of

course, is death.

Neglect can also have deleterious medical effects. Neglected children have been found to have

poorer medical care with more frequent lapses

(e.g., in their immunizations) than children in a

comparison group (228). Ingestions of poisonous

substances have been associated with family dysfunction and lack of supervision (59,598). Some

children who exhibit nonorganic failure to grow

and develop as expected for their age and sex have

been neglected by their parents.

Generally, bruises will fade, welts will resolve,

burns and lacerations will heal. The most common and most important lasting effects of child

maltreatment are often psychological. Although

research on the psychological and developmental effects of maltreatment is sorely lacking (1),

some studies of abused children indicate that they

have more aggression and behavioral problems

than children who have not been abused. Abused

children often have an impaired ability to develop

a sense of trust in others. Some of them develop

cognitive deficits. Abused children frequently

manifest a general air of depression, unhappiness,

and sadness (143).

Among the psychological effects of child sexual abuse (i. e., outcomes manifesting within 2

years of the abuse) are anger, hostility, and sex-
178 ● Healthy Children: Investing in the Future

ual problems (157,606,764). Most studies of the

long-term effects indicate that depression is an

important symptom among women who were

molested as children. Other long-term effects include suicide attempts, sleep problems, diminished

self-esteem, fear and hostility towards men and

women, enduring rage toward parents, and difficulties with adult sexual functioning (143).

Long-term effects of child abuse and neglect

may include juvenile and adult crime. A remarkable 40-year longitudinal study in eastern Massachusetts has followed the lives of 232 males

raised in that area from the time the subjects were

between 5 and 9 years old (410). The researchers

gathered extensive information from the subjects’

elementary school teachers and assessments made

by social workers who visited the boys’ homes

twice a month for 51⁄2 years. They subsequently

gathered information for the study from court,

mental hospital, and clinic records; death records;

and a questionnaire mailed to the 98 percent of

subjects who were successfully traced. The investigators found that one in five (20 percent) of the

“abused and neglected” boys had been convicted

of a serious juvenile crime. Among “rejected” children, the percentage of those who had been convicted of a serious juvenile crime was even higher

(29 percent). By comparison, relatively few (7 percent) of the boys from “loving” families had been

convicted of such a crime.

The association between maltreatment and

adult crime was studied by Lewis and colleagues

(379a). Almost one-half of the 97 neglected or

abused children studied had become criminal, alcoholic, mentally ill, or died before reaching 53

years of age. There were no significant differences

between those who were maltreated and those

who were not in terms of occupational status,

marital status, alcoholism, or use of physical

punishment on their children.

In summary, the outlook for maltreated children is not good. While some children appear to

be invulnerable, and on most measures there is

a wide range of outcomes, research findings and

clinical experience attest to significant physical,

cognitive, and emotional harm. There is little

comfort in observing that some studies found few

differences in outcomes between maltreated children and children from violent and impoverished

neighborhoods (152) or from distressed families

involved with child welfare agencies (762).

Financial Costs Attributable

to Child Maltreatment

Some, though by no means all, of the financial costs incurred nationally and attributable to

child maltreatment in 1983 have been estimated

by Daro (125). According to AAPC data, in 1983,

an estimated 23,648 children in the United States

experienced serious physical injury due to maltreatment, including brain damage, skull fractures, bone fractures, internal injuries, poisoning,

and burns (23). Assuming that half of these children required hospitalization for 5.2 days (the

mean length of stay for children with fractures),

Daro calculated that inpatient medical costs for

these children exceeded $20 million. Rehabilitation and special education services in the year following the maltreatment, according to Dare, cost

an estimated $7 million (125).

Daro also calculated the short- and long-term

costs of foster care associated with child maltreatment in 1983 (125), although her estimates of

foster care costs are probably too high. Daro assumed that 75 percent of all confirmed maltreatment case reports to child protective services agencies in 1983 resulted in a child’s spending at least

some amount of time in foster care. This assumption yielded an estimate that there were 554,254

foster care placements in 1983, with an estimated

first-year cost of $1.9 billion and long-term costs

of $27 billion (125). According to AAPC data for

1984, only about 18 percent of newly opened child

protective services cases were placed in foster care

(24). If this AAPC estimate is accurate, then

Dare’s estimates of foster care costs are too high

by a magnitude of four. Adjusting her cost estimates downward by a magnitude of four, however, still yields enormous costs for the foster care

of children maltreated in 1983—first-year costs

of $475 million and long-term costs of $6.77

billion.

Unmeasured long-run costs of child maltreatment are the cost of increased juvenile delinquency

and adult crime that disproportionately occurs in

victims of maltreatment. Estimates of these costs

have not been attempted, but they are likely to

be high.
Chapter 8—Prevention of Child Maltreatment ● 179

EFFECTIVENESS OF PREVENTIVE STRATEGIES AND PROGRAMS5

The previous section described the enormous The previous discussion of the causes of child

human and financial costs associated with child maltreatment suggests various strategies for inmaltreatment. The question is what can be done tervention. Strategies to prevent maltreatment by

to prevent such maltreatment? changing factors for which research has demonStrategies to prevent child maltreatment are strated little or no causal impact on child maltreatment (e. g., parental mental illness) are not likely generally of two types: to be effective, Strategies to prevent child malc strategies intended to prevent reoccurrences treatment by reducing-poverty-related stress and

of maltreatment in children who have al- violent responses to that stress are likely to be

ready been abused or neglected, and more effective. The stress associated wit-h these

● strategies that seek to prevent initial instances conditions might be ameliorated by referring famof child maltreatment in high-risk families. ilies to agencies that offer aid in obtaining such

Traditional preventive efforts have generally things as food stamps, Medicaid, and employment.

sought to prevent reoccurrences of maltreatment,

primarily through social case work, In all 5 0

States, child protective services agencies are required by law to respond to reports of alleged

child maltreatment, and their mandate is to ensure the protection and adequate care of children.

Typically, this task involves regular monitoring

of family situations and efforts to enhance family functioning, such as supportive counseling and

referrals to local resources. In instances of serious injury or risk to a child, child protective services agencies have the authority, after obtaining

judicial consent, to remove children from their

families and temporarily place them in substitute

Given all the interest in preventing child

maltreatment in this country, it is remarkable that

relatively few child maltreatment prevention programs have been rigorously evaluated to ascertain their short- and long-term outcomes. Furthermore, in the assessments of prevention strategies

that exist, the outcome measures (e. g., change in

knowledge about child development, change in

clinicians’ estimates of propensity for maltreatment, or children’s prediction of their responses

to a hypothetical abusive incident) have generally been rather remote proxies for child maltreatment. Assessments of prevention programs in the

area of sexual abuse have not examined outcomes

care. in terms of actual behavior and the occurrence

The fact that reported child maltreatment rates of subsequent sexual abuse. Another typical flaw

in this country have been rising suggests that the in the evaluation of child maltreatment preventraditional combination of social and legal serv- tion programs is the absence of appropriately

ices—at least in its present form—cannot cope matched comparison groups. Many evaluations

have no comparison group whatsoever. with the magnitude of the problem. Social workers must deal with large caseloads and legal ambiguities, and the legal system must struggle with

adapting rules developed to protect individual

rights to family interfactional problems. The remainder of this chapter, therefore, examines some

innovative interventions that go beyond these

traditional methods.

The child maltreatment prevention pr<~~rams described in this

sect]on are directed almost exclusively at parents or stepparents.

Gi\en the harmful effects ot maltreatment on affected children, them

i~ J clear need t or treatment of ma] t rea ted children. Some evidence

a rgue~ that an element corn m on to all terms of ~h ild ma] treatment

IS p~}chological maltreatment ( 258 ). The organization and effect i\e -

ncs~ ~~f c h] ldren mental hea 1 t h treat men t services arc discussed I n

J recent OTA background p~pcr ent]tled Children ,llent’il Hea/th

l)roblpm~ anci Ser~’ices (bb31,

A recent multiple-site evaluation of 19 demonstration projects funded by NCCAN that sought

to intervene in problem families to prevent reoccurrences of child maltreatment is discussed below. Also discussed are evaluations of selected

programs emphasizing the use of home health visitors in high-risk situations in order to prevent initial abuse and neglect.

Effectiveness of 19 Federally Funded

Clinical Demonstration Projects

Between 1979 and 1981, NCCAN sponsored a

national evaluation by Berkeley Planning Asso-
180 ● Healthy Children: Investing in the Future

ciates of 19 NCCAN-funded clinical demonstration projects (56). The 19 projects were intended

to demonstrate the effects of specialized clinical

treatments in five abuse and neglect subpopulations (sexual abuse, adolescent maltreatment, substance-abuse-related maltreatment, child neglect,

and remedial services to maltreated children). It

was hoped that by focusing on one aspect of the

maltreatment problem, a project would be better able to tailor its service programs to a more

narrow range of problems, thereby improving its

success rates.

The client database for the evaluation of the

19 projects was drawn from the caseloads of the

demonstration projects from October 1979 to October 1981. The sample consisted of 986 families,

including 1,250 adults, 710 adolescents, and 975

children. Over 60 percent of the sample families

were involved in more than one type of maltreatment.

Each family’s clinical progress was assessed

along three dimensions:

● the reincidence of maltreatment during

treatment,

. clinician judgment about propensity for future maltreatment, and

. Clinician judgment of the client’s overall

progress.

Between 40 and 60 percent of infants, children,

and adolescents were maltreated while their families were in treatment. Reincidence of all types

of maltreatment during treatment occurred in 21

percent of families in treatment. By the time treatment was terminated, only 40 percent of the children and adolescents were residing in the same

household and with the caretaker they had been

with at the start of treatment. Reincidence of sexual abuse was least frequent, and reincidence of

child neglect most frequent. Reincidence of maltreatment during treatment was not found to be

associated with the receipt or nonreceipt of any

particular service.

Adult clients of the demonstration projects

showed substantial amelioration of various functioning problems during treatment (e.g., 57 percent improved in their knowledge of child development, 55 percent in understanding their child’s

needs, 49 percent decreased their excessive “need”

for their child to obey commands, and 47 percent

had more self-esteem). Despite such progress,

however, at the termination of treatment over 50

percent of adult clients were judged likely to maltreat their children in the future.

Annual costs were calculated for hypothetical

service models to serve groups of 100 families. Total annual costs of programs for 100 families

ranged from $516,000 to $1,600,000. Individual

psychotherapy, particularly for children and

adolescents, was found to be an especially expensive intervention.

There are several critical flaws in this evaluation. First, and most important, the demonstration projects were not designed as controlled or

even quasi-controlled experiments. There were no

comparison groups, let alone a control group

where clients are randomly assigned to programs.

Second, the use of clinician judgment as an outcome measure is questionable. Clinicians working with families cannot be expected to make unbiased judgments of their clients’ progress; a

clinician’s faith in his or her therapeutic ability,

hopes for a client, and knowledge that one’s work

is being evaluated might be expected to influence

a clinician’s final assessment.

Although the evaluation’s findings with respect

to reincidence of maltreatment during treatment

were not encouraging, the investigators argue that

one-third of the reincidence cases were less serious than they were originally and that there might

have been more maltreatment in the absence of

the program. Without a comparison group in the

evaluation, however, it is impossible to ascertain

whether more maltreatment might have occurred

in the absence of the program. Last, as the investigators themselves acknowledge, the lack of outcome data beyond the time of the clients’ termination with the demonstration programs is a

serious limitation. Continuation of the evaluation was proposed, but additional funding from

NCCAN was not available.

Effectiveness of Five Home Health

Visitor Programs

Evaluations of five programs emphasizing the

use of home health visitors to prevent child

maltreatment in families at risk are discussed be-
Chapter 8—Prevention of Child Ma/treatment ● 181

low. All five programs provided a wide array of

services, consistent with a view that no single

causal factor can explain child maltreatment and

hence that no specific single intervention is likely

to be effective by itself. Most of the programs are

intended to prevent initial instances of maltreatment, although one of them (Project 12-Ways)

was aimed at preventing reoccurrences of maltreatment.

Intensive Pediatrician Contact and Home

Visits to High-Risk Mothers

One home health visitor project provided intensive pediatrician contact (office visits and telephone calls) and weekly home visits by public

health nurses to a random sample of 50 high-risk

mothers who had had their first or second child

at Colorado General Hospital (225). The project

also involved coordination of screening, medical

followup, and home visits by lay health visitors.

For purposes of evaluating this project, Gray

and colleagues randomly selected high-risk and

low-risk comparison groups (225). The assessment

of project outcomes, completed when a child was

between the ages of 17 and 35 months, included

measures of verified abuse and neglect reports to

the central child abuse registry, hospitalization for

serious injuries, number of accidents, foster care

placements, and developmental tests.

The Gray, et al., study found that five children

in the high-risk control group required hospitalization for serious injuries thought to be abuserelated, compared to no children in the high-risk

homes visited and no children in the low-risk control group (p < 0.01).

Hospital Support and Home Visits

to Low-Income Mothers

The effectiveness of early and extended contact

between a mother and her newborn infant, combined with a program of home visits by paraprofessionals, has been evaluated by Siegel, et al.

(586). The population that received the interventions was a group of low-income women who received care at a public prenatal clinic and who

delivered at the community hospital in Greensboro, North Carolina. Altogether 321 low-income

women (about three-fourths black and two-thirds

unmarried) were randomly assigned to varying

combinations of hospital and home support interventions and to a nonintervention control

group. The home intervention consisted of nine

visits by paraprofessionals during the first 3

months of the infant’s life; these visits were intended to promote the mother’s involvement with

her infant and to support the mother in coping

with a range of situational stresses.

The outcome assessment was completed when

the infant was 4 and 12 months of age. Outcome

measures consisted of maternal attachment, immunizations, preventive care visits, emergency

room visits, hospitalizations, and reports of child

abuse and neglect obtained from the county unit

for protective services and the State central registry. With one exception, neither rooming-in nor

home visits had a statistically significant effect on

any of the outcome measures. An exception was

a small amount of variance in maternal attachment that appeared to be linked to rooming-in.

Home-Based Services and Support Groups

for Families at Risk

The effectiveness of a program developed by

the Family Support Center in Yeadon, Pennsylvania, for families considered to be at risk for

maltreating their preschool age children has been

evaluated by Armstrong (33,34).

A multidisciplinary staff and volunteers offered

three services to parents and children in the Family

Support Center program:

● home-based services (weekly visits for the

first 3 months and less frequent visits for up

to 10 months),

• family school support groups, and

● neighborhood support groups.

Also offered was a wide array of counseling,

educational, health-related, and social activities.

To enter the Family Support Center program,

self-referred families and families referred by local agencies and medical sources were screened

by a high-risk stress index. Armstrong’s program

evaluation was based on 46 families and their 74

children referred from the following sources:

● self-referrals (10 families),

● child protective agencies (10 families),
182 ● Healthy Children: Investing in the Future

—

● hospitals (9 families),

● preschool programs (7 families),

● mental health agencies (4 families),

● community nursing agencies (3 families), and

● recommendations of other families who had

participated in the program (3 families).

Armstrong’s evaluation of the Family Support

Center used three outcome measures: 1) a highrisk stress index that counted the number of

stresses incurred by each family, 2) parent-child

observations done in the home, and 3) a children’s

developmental index. Pretest and posttest measures on these three measures were obtained, but

there was no control or comparison group. Armstrong did, however, compare the percentage of

children in the study who had a formal report of

child abuse and neglect filed on their behalf with

the child protective service agency during treatment with the percentage of children from a similar high-risk population reported in another

study. Armstrong’s evaluation of the Family Support Center indicated that family stresses were significantly reduced, parent-child interactions and

child care conditions improved, developmental

delays were reduced, and significantly fewer children were maltreated during the study period.

Home Visits and Other Services for High-Risk

Pregnant Women and Mothers

Olds and colleagues examined the effectiveness

of a family support program during pregnancy

and the first 2 years after birth (471) for women

who were having their first baby and were also

under 19 years of age, single, or of low socioeconomic status. In a randomized clinical trial, four

treatment groups were provided with different

combinations of the following services:

●

●

●

●

home visits by nurses during the mother’s

pregnancy,

free transportation of mothers and children

to prenatal and well-child visits,

sensory and developmental screening of the

children, and

home visits by nurses during the child’s first

2 years of life.

The nurse-visited and comparison group

women were equivalent in all standard sociodemographic characteristics, and the researchers

controlled for the few differences in psychological and social support variables in their analyses.

The nurse home visitor had three major activities. One was to educate parents about fetal and

infant development and to clarify the parents’

plans for completing their education, finding jobs,

and bearing additional children. The second activity was to involve family members and friends

in child care and support of the mother. The third

activity was to link family members with other

health and human services. All of these activities

were aimed at a number of factors believed to be

potential contributors to child maltreatment, including parental knowledge of child development,

unemployment/poverty, and social isolation.

Olds found that in the mothers at highest risk—

poor, unmarried teenaged mothers—19 percent

of the comparison group maltreated their children,

compared to 4 percent of the mothers who were

visited by nurses for the extended period. (Maltreatment was measured by verified cases of abuse

or neglect reported to the New York State Department of Social Services, ) Furthermore, among this

same high-risk group, the mothers who were

nurse-visited reported that their babies cried less

frequently than those in the comparison group;

there was less conflict and scolding; they punished

their infants less when assessed at 10 and 22

months of age; they had fewer emergency room

visits, and their babies had higher developmental quotients at 12 and 24 months. These findings

constitute a clear pattern of improvements made

by the highest risk group of poor, unmarried, teen

mothers,

Project 12-Ways Services to Families Referred

From Child Protective Services

Lutzker and Rice evaluated the effectiveness of

a project that attempted to reduce reoccurrences

of child maltreatment in families by providing a

variety of in-home services—e.g., training in

stress reduction, home safety and parenting skills;

job placement; alcoholism referral; and couples

counseling.

The population studied consisted of families referred from the child protective services agency

for the State of Illinois. The study compared 50

families served by Project 12-Ways and 47 com-
parison protective services families for incidents

of abuse and neglect during and after treatment.

Lutzker and Rice found that Project 12-Ways

families had fewer children abused and neglected

during and after treatment than did comparison

protective services families (10 v. 22 percent).

Project 12-Ways families also had fewer children

abused or neglected two or more times and fewer

total abuse and neglect incidents (5 v. 15 percent).

Although the sample sizes were small, the differences between the experimental and comparison groups in this study were statistically significant. Unfortunately, however, the selection of

families into Project 12-Ways was not random and

no demographic data were reported by the investigators. Consequently, it is impossible to know

whether the observed effects were real or were

merely the result of systematic differences between

the experimental and comparison groups.

Conclusions About the Effectiveness of Home

Health Visitor Programs

Four of the five evaluations of home health visitor programs described above indicate that home

health interventions are quite effective in reducing actual child maltreatment, as well as in influencing other outcome measures of interest (33,34,

225,391,471 ).6

The fifth study, which had a randomized design, found that intensive postpartum contact and

home visits by paraprofessionals had almost no

significant effects (586). Several factors other than

the potential effectiveness of home health visits

might account for the outcome of this study by

Siegel, et al. First, a 3-month program of nine

home visits may not provide sufficient contact to

establish effective rapport (470). 7 Second, among

“Although the Gray, et al., study of pediatric care and home visits

(2251 did not show a statistically significant effect of home visits

on child maltreatment reports to a central registry, home visits had

a statistically significant effect on abuse-related hospitalization; moreover, for the non-home-visited-high-risk group, there was evidence

of underreporting of abuse incidents to the central registry.

‘The Gray, et al., study (225) indicated weekly visits by public

health nurses for a period of at least 17 months. The Armstrong

stud}’ (33,34 ) indicated weekly visits for the first 3 months and less

often for the next 7 months. The Lutzker, et al., stud}? (3Q0 ) inJi -

ca ted home visits for about I year, although no information was

provided about the frequency of visits. The Olds, et al., study (471)

lncflcated nine visits during pregnancy, weekly visits for CJ weeks

following deliver], and less frequently thereafter tor a period up

to 2 >~ears following delivery,

Chapter 8—Prevention of Child Maltreatment ● 183

—. — —

the five programs evaluated, the North Carolina

program evaluated by Siegel, et al., was the only

one with home visits conducted by paraprofessionals. It may be that paraprofessionals are less

able to obtain the respect of families and less able

to communicate effectively with physicians than

professionals (470). Third, the Siegel, et al., study

did not analyze the potential effects of home visits

on any high-risk subgroup within the low-income

study population (e. g., among families referred

to child protective services). Fourth, in the two

other studies where the racial composition of the

study population was indicated, the study population was mostly or exclusively white; in contrast, the study population in the Siegel, et al.,

study was three-quarters black, Finally, given the

relative rarity of child maltreatment, even in highrisk groups, it is extraordinary that significant

differences were found in any of the studies with

so few subjects.

It is difficult to know which program elements

or combination of elements are the most important in producing the positive results. Three of

the four home visitor programs that appear to

have reduced child maltreatment also offered additional services such as intensive pediatrician

contact. With the exception of the report by Olds,

et al., on the family support program in New York

(471), none of the study reports offered much detail on the content of home visitor services. All

that can be said is that the common denominator is the provision of in-home services to a population at high-risk for child maltreatment.

It is difficult to know if the results of these pilot home visitor programs run by dedicated, enthusiastic, and skilled people could be replicated

in other settings where the intervention may be

carried out by less skilled and enthusiastic people (245). Nevertheless, the home health visitor

program model appears to have a number of practical advantages that enhance its effectiveness, including:

●

●

●

reaching parents who lack self-confidence

and trust in formal service providers,

obtaining a more accurate and direct assessment of the home environment,

linking parents with other health and human

services, and
184 • Healthy Children: Investing in the Future

.

● serving “as a visible and regular reminder to glect of children in our society are not conparents that excessive punishment and ne- doned” (470).

FEDERAL AND STATE FUNDING FOR THE PREVENTION OF

CHILD MALTREATMENT

Between 1981 and 1985, the resources available

for the prevention and treatment of child abuse

and neglect did not keep pace with the rapid increases in the reported number of maltreated children (657). For the 31 States able to provide complete information, total resources to serve abused

and neglected children increased, in real terms,

by less than 2 percent between 1981 and 1985

(657). In 29 of 31 States reporting such information for 1981-85, reports of child maltreatment

rose faster than available Federal, State, and local resources (657).

Four Federal programs give funding to States

for the prevention and treatment of child abuse

and neglect: Title XX, Title IV-B, and Title IV-E

of the Social Security Act, and the Child Abuse

Prevention and Treatment Act (Public Law

93-247 ).’

The largest source of Federal funds, and in some

States the largest single source of funds, for child

protection services is the Title XX (Social Services) block grant. Title XX provides funds to States

for a wide variety of social services, including

home-based services for elderly people, transportation for handicapped people, and child protection services for abused and neglected children.

From fiscal year 1981 to 1986, Federal appropriations for Title XX declined—from $2.9 billion in

1981 to $2.6 billion in 1986. No breakdown on

the percentage of Title XX expenditures that were

used to benefit children—let alone to treat or prevent child abuse and neglect—is available. The

U.S. Department of Health and Human Services

has estimated, however, that about one-third (31

percent) of Title XX expenditures in 1980 were for

services provided to children and youth.

‘Information and data on sources of funding in this section are

derived from Abused Children in America: Victims of Official Neglect, a 1987 report by the House Select Committee on Children,

Youth, and Families (657).

Title IV-B of the Social Security Act provides

matching Federal grants to States for the provision of child welfare services to children and families, irrespective of income. In comparison to Title XX, this program is very small. In fiscal year

1981, appropriations for Title IV-B were only

$141 million; in fiscal year 1985, the appropriations were increased to $200 million.

Title IV-E of the Social Security Act provides

matching funds to States for maintenance of children in foster care who are eligible for AFDC. Title IV-E is an entitlement program for eligible children, and the amount each State receives is based

on the number of children the State places in foster care, which includes abused and neglected children. Title IV-E funds increased from $349 million in fiscal year 1981 to $485 million in fiscal

year 1985.

The Child Abuse Prevention and Treatment

Act is the only Federal program designed solely

to prevent, identify, and treat child abuse and neglect. Under this act, Federal funds are provided

to the National Center on Child Abuse and Neglect (NCCAN) to award as State and discretionary grants for projects related to child abuse and

neglect. As shown in table 8-3, overall funding

for NCCAN State and discretionary grants increased from $23.0 million in fiscal year 1981 to

$24.7 million in fiscal year 1986, with significant

funding reductions in the intervening years.

NCCAN grants to eligible States and territories may be used for any child abuse and neglectrelated activities, provided the States meet specified requirements that include mandatory reporting of child abuse and neglect by professionals,

immunity from prosecution for those who report,

and prompt investigation of all reports. State

grants rarely go into direct services; they are usually used as seed money for innovative programs.
Chapter 8—Prevention of Child Maltreatment • 185

Table 8-3.—National Center for Child Abuse and Neglect (NCCAN) Funding for State and Discretionary Grants,

Fiscal Years 1981-86 (millions of dollars)

FY 1981 FY 1982 FY 1983 FY 1984 FY 1985 FY 1986

State grants . . . . . . . . . . . . . . ... . . . . . . . . . . . . . . . . . . . . . $ 7.0 $6. 7 $6. 7 $6. 7 $12.0 $11.4

Discretionary grants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16.0 9.5 9.5 9.5 14.0 13,3

Total . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . $23.0 $16.2 —

$16.2 $16.2 —

$26.0 $24.7

SOURCE U S Congress, House Select Committee on Children, Youth, and Families, Abused Children in America Victims of Of Official Neglect (Washington, DC: U S

Government Printing Office, March 1987)

NCCAN discretionary grants are awarded to

public agencies, private nonprofit organizations,

and universities for projects that relate to the prevention, identification, and treatment of child

abuse and neglect. Discretionary grants are

awarded for research, demonstration, and improvement of existing service programs.

There have been a number of criticisms of

NCCAN’s discretionary grants program. In 1980,

the General Accounting Office (GAO) found that

“due to a largely unsuccessful evaluation program,

the Center has been unable to determine which

programs work best” (367,651). At hearings conducted by the House Committee on Government

operations, March 12, 1987, the lack of evaluations of child abuse and a propensity of NCCAN

to ignore the recommendations of its peer review

panel in making grant awards were raised in critique of the Center (655).

In fiscal year 1986, the vast majority (about 80

percent) of NCCAN discretionary grant expenditures were for demonstration projects, followed

by research (about 15 percent) and training and

technical assistance (about 5 percent) (678). Although NCCAN grants for research (e.g., research

on how to improve the accuracy and credibility

of children’s testimony in sexual abuse cases) may

yield valuable information, demonstration projects are the only potential source of evaluations

of program effectiveness. Discerning the design

of the projects from the discretionary grant abstracts is difficult, but only 2 of 87 demonstration projects active in 1986 appear to have a carefully designed program evaluation. In addition,

there appear to be no longitudinal studies among

those funded. Although evaluation studies are inherently difficult, the current pattern of funding

is not likely to remedy the problems identified in

the GAO’s 1980 report (651).

The Federal Government is not the only source

of funds in the area of child maltreatment. Many

State and local governments provide resources for

the prevention and treatment of child abuse and

neglect, and in some States, State and county

funds are the largest source of funding. Funds are

provided from State general funds, children’s trust

funds, and other State and local programs. Between fiscal years 1981 and 1985, 15 of the 31

States supplying complete funding information reported a net decrease (in constant 1982 dollars)

in State and local funds directed at child abuse

and neglect; the remaining 16 States reported a

net increase (657). State and local funds for all

31 States showed a total net gain of $169.2 million, with most of the increase in one State alone,

California.

CONCLUSIONS

Child maltreatment is a serious problem, affect- proaches work, for whom, and under what ciring the lives of many children and families, cumstances still does not exist. Rigorous scientific

Knowledge about child maltreatment is growing assessment in the field is clearly needed.

steadily. Evaluation research and cost-effectiveness analyses of maltreatment prevention pro- Leventhal (375), Finkelhor and Araji (172), and

grams do offer some useful insights; however, Gray and DiLeonardi (223) have offered useful

adequate information about which preventive ap- guidance for research in child maltreatment. Two

72-676 0 -88 - 5 
186 Ž Healthy Children: Investing in the Future

key methodological requirements for evaluation

studies are the clear definition of outcome measures and the use of appropriate comparison

groups. However, there are inherent difficulties

in conducting research on child maltreatment. In

high-risk situations, the random assignment of

children considered to be in need of services to

treatment or comparison groups would not always be ethical, One alternative is to compare

different programs or to study children waiting

for placement in a treatment program as a comparison group. These so-called “natural experiments” have not been sufficiently utilized in this

area of research.

Another problem for researchers is measuring

the key outcome—i.e., the occurrence of child

maltreatment. Child maltreatment reports are

often confidential, and direct observation of

maltreatment is virtually impossible. In some

areas, child protection agencies have cooperated

with researchers, or have hired their own research

staff, while protecting the confidentiality and

rights of clients. Measures of actual child maltreatment are the bottom line, and “it will not suffice

to substitute measures of attitude alone” (194) or

behavior apart from maltreatment.

In order to obtain adequate measures of actual

abuse, it is particularly important to develop a

better child abuse reporting system. The reporting system should be able to provide measures

that permit distinctions between incidence and

severity. Child homicide cases in particular need

to be closely monitored. A study of two information sources, the Federal Bureau of Investigation’s Uniform Crime Reports and National Center for Health Statistics data, indicates that each

source underrecords child homicide by at least 20

percent (217,300,302).

Very little longitudinal followup assessment has

been done, largely because of budget constraints.

Long-term outcomes are of critical interest, and

research in this area is imperative.

The evaluations of child maltreatment prevention programs summarized in this chapter suggest

that the home health visitor model, using a nurse,

social worker, or counselor to support high-risk

families, is probably effective. Furthermore, the

home health visitor model seems to offer a number of practical advantages that enhance its effectiveness (e.g., reaching parents who avoid or

are mistrustful of formal service providers). The

model also builds on a public health activity that

has an institutional base in home-health agencies

and public health departments. g Whether maltreatment prevention programs with these characteristics can result in net savings in total health

care costs is a question that needs further research.

Of course, there maybe other kinds of preventive interventions that hold promise and have not

been adequately tested. If poverty- and unemployment-related stresses are important causes of

child maltreatment, as has been suggested, then

interventions focusing on reduction or management of these stresses may be effective. Some observers have suggested, for example, that intervention programs should provide concrete

assistance to families in resolving problems having to do with inadequate income, poor housing,

lack of medical care, and lack of formal and informal social supports (124). Unfortunately, careful evaluations of such interventions are lacking.

‘There is evidence that visiting nurses can also be effective in improving birthweight and length of gestation (469), and lowering infant mortality, particularly mortalit y due to sudden infant death

syndrome (94).
Appendixes
Appendix A

Method of the Study

This assessment was requested by the House Energy

and Commerce Committee and its Health Subcommittee and the Senate Committee on Labor and Human

Resources. The committees asked OTA to examine the

status of children’s health; problems in children’s access to effective health services; and the effectiveness

and costs of selected technologies, particularly preventive strategies for improving the health of children. In

addition, the Senate Finance Committee asked for an

assessment of a new technology for prenatal care: tocodynamometry. The assessment began on October 1,

1985.

One of the first tasks in planning an OTA assessment is to choose an advisory panel of experts in various fields. The advisory panel for an OTA assessment

suggests source materials, subject areas, and perspectives for staff consideration; assists in interpreting information and points of view assembled by OTA staff;

and suggests possible findings and conclusions based

on the study. Panel members review staff and contract

materials for accuracy and representativeness, discuss

policy options of the study, and present arguments for

and against the options and conclusions. The final report, however, is the responsibility of the OTA staff.

The advisory panel for this assessment of technologies related to child health consisted of 18 members

with expertise in health policy, health economics, clinical medicine, law and medical ethics, as well as experience in State and Federal Government and academia. The advisory panel was chaired by Harvey

Fineberg, Dean of the Harvard School of Public

Health.

The first panel meeting was held on February 11,

1986. OTA staff for the project presented topics for

the panel’s discussion of the overall plan for the assessment. Major chapter topics selected for study were the

problem of infant mortality, family planning, prenatal care, neonatal intensive care, newborn screening,

well-child care, prevention of accidental injuries, and

prevention of child maltreatment.

Contracts were let for background papers and acquisition of data on a variety of issues for staff use

in preparing the assessment. These contracts are listed

at the end of this appendix. Background papers with

an asterisk (*) are or will soon be available from the

National Technical Information Service (NTIS).

OTA prepared two documents in addition to the

main report for this project. They include a technical

memorandum, Technology-Dependent Children: Hospital v. Home Care, and a case study, Neonatal Intensive Care for Low Birthweight Infants: Costs and

Effectiveness. They are available from the U.S Government Printing Office.

The second meeting with the advisory panel was

held on August 5, 1986. OTA staff presented outlines

of each chapter for the panel’s discussion. In addition,

some preliminary data were presented for discussion.

Suggestions for improvement were provided by the

panel members.

At the last panel meeting, on February 24, 1987,

OTA staff had prepared a draft of the final report. The

panel was mailed a copy prior to the meeting. Comments were provided by the panel and discussed at the

meeting. It was agreed that OTA staff would revise

the draft and send it out for a broader review.

After revising the main report, OTA staff mailed

the second draft to more than 125 reviewers. These

reviewers represented a broad range of experts in a

diversity of settings. Appropriate revisions based on

comments received were made by OTA staff, and the

report was submitted to the Technology Assessment

Board on July 27, 1987.

189
190 • Healthy Children: Investing in the Future

— — .

Contractor Subject

Martha Burt

The Urban Institute

Washington, DC

Pregnancy Prevention Strategies for Improving

Child Health

Howard Dubowitz

University of Maryland Medical School

Baltimore, MD

Isaac Eberstein and Robert Weller

Center for the Study of Population

Florida State University

Gainesville, FL

Warren Greenberg

Department of Health Services Administration

The George Washington University

Washington, DC

Charles Homer

Massachusetts General Hospital

Boston, MA

Information Service Center, Inc.

Baltimore, MD

Michael Kenney

Pinole, CA

Lorraine Klerman and Helen Burst

Yale University

New Haven, CT

Peter McMenamin

Washington, DC

Bonnie Preston

Takoma Park, MD

Leon Robertson

Nanlee Research

Branford, CT

T. Paul Schultz

Economic Growth

Yale University

New Haven, CT

Katherine Swartz

The Urban Institute

Washington, DC

Center

Child Maltreatment in the United States: Etiology,

Impact, and Prevention*

Data Analysis of 1980 National Natality Survey

on the Adequacy of Prenatal Care and

Pregnancy Outcome

The Impact of Product Liability Laws on the Costs

of Injury Prevention Devices and Products

Evaluation of the Effectiveness of Well-Child Care

Services for Children*

Maryland Hospital Use and Cost Data

Task I—Assessment of CDC’s Quality Assurance

and Proficiency Testing in Newborn Screening

Task II—Description and Comparison of Four

Neonatal Screening Programs in the United

States

Summary of Recommendations on and Evidence of

the Effectiveness of Recommended Prenatal Care

Components*

Medicaid Participation by Pediatricians and

Obstetricians*

Description of the Early and Periodic Screening,

Diagnosis, and Treatment Program: History,

Evaluation, and Issues*

Costs and Effectiveness of Strategies To Prevent

Unintentional Childhood Injuries*

Data Analysis of the 1980 National Natality

Survey: Prenatal Care for Low Income Women

Task I—Data Analysis of the Current Population

Survey and Children’s Health Insurance

Coverage

Task II—A Note on the Strengths and Weaknesses

of Using the CPS To Estimate Children’s Health

Insurance Coverage*

‘Available from the National Technical Information Service, Springfield, VA
Appendix B

Acknowledgments

The development of this report has benefited form the advice and review of a number of people in addition

to the Advisory Panel. OTA staff would like to express its appreciation of the following people for their valuable

guidance.

Kathryn Allen

U.S. General Accounting Office

Washington, DC

Merelina Amoni

National Highway Traffic Safety Administration

Washington, DC

Susan Baker

Johns Hopkins School of Public Health

Baltimore, MD

Wendy Baldwin

National Institute of Child Health and

Human Development

National Institutes of Health

Bethesda, MD

Howard Barden

Lunar Corp.

Madison, WI

Steven Barid

Centers for Disease Control

Atlanta, GA

Heinz Berendes

National Institute of Child Health and

Human Development

Bethesda, MD

James Bowman

University of Chicago

Chicago, IL

Claire Brindis

Institute for Health Policy Studies

University of California at San Francisco

San Francisco, CA

Sarah Brown

Institute of Medicine

Washington, DC

James Buehler

Centers for Disease Control

Atlanta, GA

Neil Buist

Oregon Health Sciences University

Portland, OR

Alex Calcagno

American Academy of Pediatrics

Washington, DC

Steven Caritis

Magee-Women’s Hospital

Pittsburgh, PA

Patricia Castiglia

State University of New York at Buffalo

Buffalo, NY

Anne Cohn

National Committee for the Prevention of

Child Abuse

Chicago, IL

Robert Creasy

University of Texas Medical School

Houston, TX

George Cunningham

California Department of Health Services

Berkeley, CA

Deborah Daro

National Committee for the Prevention of

Child Abuse

Chicago, IL

Richard David

Tokos Medical Corp.

Santa Ana, CA

Jessica Davis

North Shore University Hospital

Cornell University

Manhasset, NY

John Driscoll

Columbia-Presbyterian Medical Center

New York, NY

Patrick Dwyer

Pittsburgh Plate Glass Biomedical

Pleasantville, NY

Donald Eddins

Centers for Disease Control

Atlanta, GA

Patrick Ferreira

University of Alberta Hospitals

Edmonton, Alberta, Canada

Les Fisher

New York Public Health Department

New York, NY

191
192 • Healthy Children: Investing in the Future

Gretchen Fleming

American Academy of Pediatrics

Elk Grove Village, IL

Samuel Flint

American Academy of Pediatrics

Elk Grove Village, IL

Jacqueline Forrest

Alan Guttmacher Institute

New York, NY

Irene Forsman

Health Resources and Services Administration

Rockville, MD

Eva Friedman

Children’s Hospital of Los Angeles

Los Angeles, CA

Sarah Friedman

National Institutes of Health

Bethesda, MD

Susan Gallagher

Harvard School of Public Health

Boston, MA

James Garbarino

Erikson Institute for Advanced Study in

Child Development

Chicago, IL

Richard Genes

University of Rhode Island

Kingston, RI

Michael Glass

Washington State Public Health Laboratory

Seattle, WA

Sheila Gordon

Laboratories Administration

Maryland State Department of Health and Hygiene

Baltimore, MD

Jeanne Griffith

Congressional Research Service

Washington, DC

Robert Guthrie

State University of New York at Buffalo

Buffalo, NY

Bernard Guyer

Massachusetts Department of Public Health

Boston, MA

Jack Hadley

Washington, DC

Neal Half on

University of California, Berkeley

Berkeley, CA

David Hall

St. George’s Hospital Medical School

London, England

Keith Hammond

University of Colorado

School of Medicine

Denver, CO

James Hanson

University of Iowa Hospitals and Clinics

Iowa City, IA

James Harisiades

American Academy of Pediatrics

Elk Grove Village, IL

Robert Hartford

National Center for Health Statistics

Hyattsville, MD

David Hassemer

University of Wisconsin Center for Health Sciences

Madison, WI

John Hauth

University of Alabama

Birmingham, AL

David Heppel

Health Resources and Services Administration

Rockville, MD

Lindsay Hofman

State Laboratory of Public Health

Raleigh, NC

Philip Home

Centers for Disease Control

Atlanta, GA

Vince Hutchins

Health Resources and Services Administration

Rockville, MD

L. Stanley James

Columbia-Presbyterian Medical Center

New York, NY

Ted Joyce

National Bureau of Economic Research

New York, NY

Harold Kaminetzky

American College of Gynecology

Washington, DC

Michael Katz

University of California, San Francisco

San Francisco, CA

Asta Kenney

Alan Guttmacher Institute

Washington, DC
Appendix B—Acknowledgments

—

Raymond Kessel

University of Wisconsin

Madison, WI

Samuel Kessel

Health Resources and Services Administration

Rockville, MD

James King

Mater Mothers’ Hospital

Brisbane, Australia

Michael Klass

ICF, Inc.

Washington, DC

Joel Kleinman

National Center for Health Statistics

Hyattsville, MD

Sydney Kling

Illinois Department of Public Health

Springfield, IL

Richard Koch

Children’s Hospital of Los Angeles

Los Angeles, CA

Carol Korenbrot

Institute for Health Policy Studies

University of California at San Francisco

San Francisco, CA

Mary Grace Kovar

National Center for Health Statistics

Hyattsville, MD

Charles Lakin

University of Minnesota

Minneapolis, MN

Robert Lawrence

Cambridge Hospital

Cambridge, MA

Robert Leibenluft

Hogan & Hartson

Washington, DC

Athole Lennie

California Department of Health Services

Sacramento, CA

Claire Leonard

University}’ of Utah School of Medicine

Salt Lake City, UT

Aidan Macfarlane

The Radcliffe Infirmary

Oxford, England

Denise Main

Mt. Zion Hospital

San Francisco, CA

Edward McCabe

Institute for Molecular Genetics

Houston, TX

Marie C. McCormick

Children’s Hospital of Philadelphia

Philadelphia, PA

Art McDonald

Consumer Product Safety Commission

Washington, DC

Peggy McManus

McManus Health Policy, Inc.

Washington, DC

F. John Meaney

Indiana State Board of Health

Indianapolis, IN

Janet Mitchell

Center for Health Economics Research

Needham, MA

John Morrison

University of Mississippi Medical Center

Jackson, MS

William Mosher

National Center for Health Statistics

Hyattsville, MD

Edwin Naylor

Western Pennsylvania Hospital

Pittsburgh, PA

Paul Newacheck

University of California, San Francisco

San Francisco, CA

Elena Nightingale

Carnegie Corporation of New York

Washington, DC

David Olds

University of Rochester Medical Center

Rochester, NY

Elsie Pamuk

National Center for Health Statistics

Hyattsville, MD

Nigel Paneth

Columbia University

New York, NY

Susan Panny

Maryland Department of Health

Baltimore, MD

Mary Peoples-Sheps

University of North Carolina

Chapel Hill, NC

● 1 9 3
194 ● Healthy Children: Investing in the Future

Ciaran Phibbs

University of California, San Francisco

San Francisco, CA

Paul Placek

National Center for Health Statistics

Hyattsville, MD

Kate Praeger

National Center for Health Statistics

Hyattsvile, MD

Linda Saltzman

Centers for Disease Control

Atlanta, GA

Peter Scheidt

National Institutes of Health

Bethesda, MD

Art Schletty

Centers for Disease Control

Atlanta, GA

Shirley Shelton

American College

Gynecologists

Washington, DC

George Silver

Yale University

New Haven, CT

William Slazyk

of Obstetricians and

Centers for Disease Control

Atlanta, GA

Roberta Spiro

State of Washington Department of Social and

Health Services

Seattle, WA

Michael Sullivan

University of Iowa

Iowa City, IA

Brad Therrell

Hospitals and Clinics

Texas State Department of Health

Austin, TX

Owen Thornberry

National Center for Health Statistics

Hyattsville, MD

Horace Thuline

Genetic Services Division

State of Washington Department of Social and

Health Services

Seattle, WA

Stephanie Ventura

National Center for Health Statistics

Hyattsville, MD

Ronald Wilson

National Center for Health Statistics

Hyattsville, MD

Barry Wolf

Medical College of Virginia

Richmond, VA

Sumner Yaffe

National Institutes of Health

Bethesda, MD

Laurie Zabin

Johns Hopkins University School of Medicine

Baltimore, MD
Appendix C

U.S. Infant, Neonatal, and

Postneonatal Mortality Rates

Table C-1. –U.S. Infant Mortality Rate and Annual Percentage Change by Race, 1968-85

Infant mortality ratea

All races

Year Rate

1968 . . . . . . . . ... 21.8

1969 . . . . . ... ... 20.9

1970 . . ... . ... . 20.0

1971 . ... . . . . . 19.1

1972 . . . . . ... 18.5

1973 . . . . . ... . 17,7

1974 ., . ... ... 16,7

1975 . . . . . . . . . . . . . . 16,1

1976 . . . . . . . . . . . . 15,2

1977 . . . . . . . . . . . 14,1

1978 . . . . . . . . . . . . . 13.8

1979 . . . . . . . . . . . . . 13.1

1980 . . . 12,6

1981 . . . 11,9

1982 . . . . . . . . . . . . 11.5

1983 . . . . 11.2

1984 . . . . . . . . . . . . . . 10,8

Percent changeb

–4. 3

–4.0

–4.5

–3.4

–4,1

–5.7

–3.8

–5.2

–7,3

–2,4

–5,3

–3.6

–5.4

–3.5

–3.1

–3.4

Whites

Rate Percent changeb

19.2

18.4

17.8

17.1

16,4

15.8

14.8

14.2

13,3

12.3

12.0

11.4

11.0

10.5

10.1

9.7

9.4

—

–4.1

–3.6

–3.8

–4.1

–3.6

–6.1

–4.5

–6.1

–7.3

–2.6

–4.9

–3.7

–4.7

–3.8

–3.3

–3,1

Blacks

Rate

36.2 ‘

34.8

32.6

30.3

29,6

28,1

26.8

26.2

25.5

23.6

23.1

21.8

21.4

20.0

19.6

19,2

18,4

Percent changeb

—

–3.9

–6,1

–7.1

–2.3

–5.1

–4.7

–2.1

–2,5

–7.5

–2.2

–5.8

–1.9

–6.4

–1,8

–2.3

–4.3

1985 . . . . . . . . . . . . . . . . . 10.6 –1.3 9.3 –1,4 18.2 –0.9

aThe ,nfant ~ortallty rate ,~ defined ~~ the number of Infants who dle in the first year of Ilfe per 1,000 IIve b!rths

bpercentage ~han~e computed Orl Infant morfaltty rates per 100000 live births.

SOURCE US Department of Health and Human Services, Pubhc Healfh Service, National Center for Health Statlstlcs, unpublished datafrom US vltalstattstlcs, Hyattsvdle

MD. 1986

Table C-2.–U.S. Neonatal Mortality Rate and Annual Percentage Change by Race, 1968-85

Neonatal mortality ratea

All races Whites Blacks

Year Rate Percent changeb Rate Percent changeb Rate Percent changeb

1968 . . . . . . . . . . . . 16,1 — 14.7 — 24.3

1969 . .

—

15,6 –3.4 14.2 –3.8 23.9 –1.4

1970 . . . . . . . . . . . . ,. 15,1 –3.2 13.8 –2.8 22.8 –4.9

1971 . . . . . . . . . . . . . 14.2 –5.9 13.0 –5.4 21,0 –7.9

1972 . . . . . . . . . . . 13.6 –4.0 12.4 –5.0 20.7 –1.4

1973 . . . . . . . . . . . . . . 13.0 –4.9 11.8 –4.3 19.3 –6.6

1974 ..., ..., . . . . . . . 12.3 –5,4 11.1 –5.9 18.7 –3.3

1975 . . ..., . . . . . . . 11,6 –5.5 10.4 –6.9 18.3 –1.9

1976 . . . . . . . . . . . . . . . 10.9 –5.7 9.7 –6.9 17.9 –2.2

1977 . . . . . . . . . . . . . . . . 9.9 –9.5 8.7 –9.4 16.1 –10.3

1978 . . . . . . . . . . . . . . . . . 9.5 –4.0 8.4 –4.1 15.5 –3.8

1979 . . . . . . . . . . . . . . 8.9 –6.5 7.9 –6.0 14.3 –7,5

1980 . . . . . . . . . . . . . . . 8.5 –4.4 7.5 –5.1 14.1 –1.6

1981 . . . . . . . . . . . . 8.0 –5.3 7.1 –5.4 13,4 –4.6

1982 . . . . . . . . . . . . . . . . . 7.7 –4.1 6.8 –4.2 13,1 –2,8

1983 . . . . . . . . . . . . . . 7.3 –5.3 6.4 –5.6 12.4 –5,0

1984 . . . . . . . . . . . . . . 7.0 –3.9 6.2 –3.6 11.8 –4.9

1985 . . . 7.0 –0,6 6.1 –1,3 12.1 +2.1

-. — aThe neonatal mortal[ty rate IS defined as the number of Infants who d!e In the first 28 days of hfe Per 1.000 live births

bpercentage change computed on neonatal mortallty rates per 100000 Ilve births

SOURCE US Deparfmentof Healfh and Human Services Pubhc Health Service, National Centerfor Health Statlstlcs unpubhshed data from US vtialstatlstlcs, Hyattsvtile

MD, 1986

195
196 • Healthy Children: Investing in the Future

Table C-3.—U.S. Postneonatal Mortality Rate and Annual Percentage Change by Race, 1968-85

Postneonatal mortality ratea

All races Whites Blacks

Year Rate Percent changeb Rate Percent changeb Rate Percent changeb

1968 ., . . . . . . . . . . . . . . . 5.7

1969 . . . . . . . . . . . . . . . . . 5.3

1970 . . . . . . . . . . . . . . . . . 4.9

1971 . . . . . . . . . . . . . . . . . 4.9

1972 . . . . . . . . . . . . . . . . 4.8

1973 . . . . . . . . . . . . . . . . . 4.8

1974 . . . . . . . . . . . . . . . . . 4.4

1975 . . . . . . . . . . . . . . . . . 4.5

1976 . . . . . . . . . . . . . . . . . 4.3

1977 . . . . . . . . . . . . . . . . . 4.2

1978 . . . . . . . . . . . . . . . . . 4.3

1979 . . . . . . . . . . . . . . . . . 4.2

1980 . . . . . . . . . . . . . . . . . 4.1

1981 . . . . . . . . . . . . . . . . . 3.9

1982 . . . . . . . . . . . . . . . . . 3.8

1983 . . . . . . . . . . . . . . . . . 3.9

1984 . . . . . . . . . . . . . . . . . 3.8

1985 . . . . . . . . . . . . . . . . . 3.7

—

–6.8

–6.6

0.2

–1.7

1.6

–6.6

+1.0

–3.8

–1.7

+1.3

–2.2

–1.8

–5.3

–2.2

+1.5

–2.4

–2.7

4.5

4.2

4.0

4.0

4.0

3.9

3.7

3.8

3.6

3.6

3.6

3.5

3.5

3.4

3.3

3.3

3.3

3.2

—

–5.0

–6.1

+1.6

–1.2

–1.6

–5.7

+2.4

–4.0

–1.6

+1.1

–2.5

–0.6

–3.4

–3.0

+1.3

–2.2

–1.4

11.9

10.8

9.9

9.4

8.9

8.8

8.1

7.9

7.6

7.6

7.6

7.5

7.3

6.6

6.6

6.8

6.5

6.1

—

–9.1

–8.8

–5.4

–4.3

–1.6

–8.0

–2.6

–3.3

–0.9

+1.1

–2.2

–2.4

–10.0

+0.2

+2.9

–3.3

–6.4

aThe Postneonatal mortallty rate is defined as the number of infants between 28 days old and 1 Year old who d!e Per 1,000 Ilve births

bpercentage change ~OMpUted on Postneonatal mortality rates per 100,000 hve births. Foranygtven Year when the rate computed Per 1.000 hve births aPPears not

to change, there can be asmafl percent change from unrounded rates computed per 100,000 hve b!rths

SOURCE U S Department of Health and Human Serwces, Publlc Health Service, National Center for Health Statl.stlcs, unpublished data from U S vital statlstlcs, Hyattswlle,

MD, 1986

Table C-4.— U.S. Infant, Neonatal, and Postneonatal

Mortality Rates and Relative Risk by Birthweight,

1980 Birth Cohort (Singletons)

Mortality rate and relative

risk a by birthweight

< 15oog < 2500g 22500g

Infant mortality:

All races . .......469.4 (93.9) 105.7 (21.1) 5.0

Whites. . ........475.3 (108.0) 103.9 (23.6) 4.4

Blacks ... . .....443.2 (61.6) 106.3 (14.8) 7.2

Neonatal mortality:

All races . . . . .. .431.2 (205.3) 89.4 (42.6) 2.1

Whites. . ........441.9 (221 .0) 89.5 (44.8) 2.0

Blacks . .........398.9 (1 47.7) 87.0 (32.2) 2.7

Postneonatal mortalityb

:

All races . . . . . . . 67.0 (23.1) 17.9 (6.2) 2.9

Whites. . . . . . . . . . 59.9 (24.0) 15.8 (6.3) 2.5

Blacks. . . . . . . . . . 73.6 (16.4) 21.2 (4.7) 4.5

aThe numbers i n parentheses denote relative risk. Relative risk IS defined as the

mortal!ty rate of infants tn a speclfled low b!rt hwelght category dlwded by the

mortality rate of Infants born at normal blrthwelght (I e , z 2500g)

bThe postrleoflatal mortality rate IS defined as the number of Infants between

28 days and 1 year old who die per 1,000 Infants survlvlng the neonatal period

(I e , f!rst 28 days after birth)

SOURCE Office of Technology Assessment 1988, calculated from the 1980 Na.

:Ional Infant Mortality Surveillance Project, Preliminary Tables, Centers

for Disease Control, Publlc Health Service, U S Department of Health

and Human Services, Atlanta, GA, May 1986
Appendix D

OTA’s

of

Derivation of the Estimate

the Population of Children

Without Health lnsurance1

As noted in chapter 3, the Current Population Survey (CPS) overestimates the population of children

without health insurance because it does not directly

ask about whether they have health insurance coverage through a noncustodial parent. Rather, if a parent responds that he or she has a policy that also covers the children, the CPS editing routine records a yes

or no response for private health insurance. Consequently, children who are covered by a private policy bought by a parent who does not live in the household, such as a noncustodial divorced parent, are

incorrectly listed as uninsured.

Although it is impossible to precisely adjust the estimates for this problem, one can estimate roughly how

many children are in this position by using the April

1984 CPS.2 The April 1984 CPS had a supplemental

questionnaire for women with children under 21 years

of age from absent fathers. On the basis of this survey, the U.S. Bureau of the Census estimated that there

were 8,690,000 women (±190,000) who had custody

of children under the age of 21 from absent fathers.

A quarter of these women had married again and

would be indistinguishable from women who had been

married only once on the March CPS—i.e., their marital status in March would be “married. ”

Among all the women with children from an absent

father, 3,995,000 (46 percent) were supposed to receive

child support payments in 1983, but only 3,037,000

(35 percent) actually received the payments. Thus, just

over a third of all women with children under 21 years

of age from an absent father received child support

payments in 1983. Of the women who actually re-

‘Thl. apperrdlx 1~ ba5ed on a background paper prepared for OTA b}

Katherine Swartz (631 I

‘The Intorrnat]on that tollows comes trom Child Support and Allmon),

IQ83 ( Supplemental Report I,’ Current Population Reports, Special Stud] es,

Series [’-13, No. 148 by the Bureau (]I the Cen\u\, U S Department of

Commerce \\’ash]ngton, DC, 1Q86

ceived child support payments, just over half had

health insurance included in the child support award

or agreement (1,641,000). On average, these women

had about 1.8 children, or about 2,954,000 children

under 21 years of age altogether nationwide.

In 1984, 59.1 percent of all children under 21 were

12 years old or younger, so for this age group, about

1,746,000 children had health insurance from absent

parents. An unknown percentage of these children

would have been reported as uninsured, when in fact

they had insurance through their child custody agreements. If the child had no other source of insurance

but that of the absent parent, then the CPS would have

shown him or her to be uninsured.

On the basis of the information just presented, OTA

calculated a lower bound on the percentage of children who were without health insurance. According

to the March 1984 CPS, 7,873,000 children between

O and 12 years of age—18 percent of all children in

that age group—were uninsured. If one assumes that

none of the 1,746,000 children with health insurance

through child custody agreements had other sources

of insurance, then the actual number of children age

12 or younger who did not have health insurance

would be 6,127,000 (7,873,000 — 1,746,000), 14 percent of the total O- to 12-year-old population in 1984.

Since 6,127,000 is 78 percent of 7,873,000, the lower

bound estimate of the number of uninsured children

O to 12 years old in 1984 is 78 percent of the number

reported by the CPS.

Applying this figure (78 percent) to the 1986 CPS

data on insuredness of children gives a lower bound

estimate of the percentage of children without health

insurance in 1986 of 14 percent. The upper bound estimate, taken directly from 1986 CPS data, is 19 percent. Thus, OTA estimates that the true percentage

of children between O and 12 years of age who were

without health insurance in 1986 lies somewhere in the

range of 14 to 19 percent.

197
Appendix E

Physician Participation in Medicaid

Issues in Measuring Physician

Participation

A question raised in chapter 3 was whether the current Medicaid payment levels are so low as to seriously

jeopardize the availability of physicians willing to

serve pregnant women and children covered by Medicaid. If acceptable access is defined as the ability of

the Medicaid patient to find a qualified doctor within

reasonable time and distance, not necessarily one of

the patient’s own choosing, participation in Medicaid

by all physicians is not necessary. Yet it is difficult to

measure the extent to which Medicaid patients are able

to find qualified physicians to serve them.

Ideally, Medicaid patients’ ability to find a participating physician should be measured directly. In fact,

however, most of what is known about physician participation is based on national surveys of physicians,

the most recent one conducted in 1984 (5,430,431,489,

593). These surveys generally ask individual physicians

two questions: 1) whether they participate in Medicaid, and 2) what share of their total practice is devoted

to Medicaid patients.

Both of these questions are inadequate. A positive

response on overall participation masks potentially

major differences among physicians in their true involvement in the Medicaid program. A physician who

has enrolled and obtained a Medicaid provider number

but who rarely sees Medicaid patients, for example,

may consider himself or herself to be participating,

when in fact he or she has virtually no involvement

in the program. The circumstances under which the

low Medicaid patient load occurs may also affect one’s

judgment about participation. Suppose the physician

will accept all Medicaid patients into his or her practice but is located in an area with so few Medicaid recipients that none are served. Which is the appropriate measure, the physician’s willingness to participate

or the actual treatment of patients?

The use of practice share as a measure of participation is also troublesome, especially when it is used to

show national trends in physician participation. Practice share can be influenced by changes in the number

of Medicaid eligibles, the size of the non-Medicaid population, and the number of physicians. As the number of eligibles decreases and the number of physicians

increases, one would expect practice shares to decrease

even in an environment of full participation. Conversely, as the number of participating physicians decreases, practice shares of those remaining to serve

Medicaid patients would be expected to increase,

Another problem in interpreting the data is the frequent reliance on self-reported estimates taken from

surveys of physicians rather than on objective data on

the physician’s actual patient population. Physicians

appear to overestimate their participation in Medicaid. One study of pediatricians found that, on average, these physicians reported that they devoted a

considerably greater percentage of visits to Medicaid

patients than was indicated by actual patient records

(i.e., 13,0 percent for self-reports v. 7.7 percent for

patient records) (343). In another survey of California physicians conducted in 1974 by the California

Medical Association, about 43 percent of physicians

indicated that they “probably would” accept a new

Medicaid patient, 19.9 percent “might” accept a new

patient, 24.6 percent “probably would not, ” and 12.4

percent “definitely would not” accept a new Medicaid patient (310). Shortly after the results of that survey were published, the results of a somewhat less scientific poll conducted by the Office of the California

State Auditor General’ were published (724). These results suggested that only those physicians who said

they “probably would” accept a new Medicaid patient

probably would.

The fact that physicians tend to greatly overestimate

their Medicaid participation suggests that survey data

based on physicians’ self-reports must be interpreted

with a great deal of skepticism.2 On the other hand,

there is no reason to suspect that the upward bias in

self-reporting of participation would change over time

or systematically vary across specialties or geographic

regions. Therefore, time-trend and comparative analysis based on physician surveys provides reasonably

valid information on changes or differences in access

to care among Medicaid populations.

Evidence on Physician Participation

in Medicaid

Recent national surveys of Medicaid participation

by physicians in pediatrics, obstetrics/gynecology

(OB/GYN), and other specialties are summarized in

‘This survey was based on calls to random physicians from purportedl}~

new Medica]d patients looking [or a physictan.

*For a more detailed discussion of reasons for inaccuracies in self-reported

surveys, see “Medicaid Part] clpatlon by Pedlatrictans and Obstetrlc]ans, ” prepared for OTA by P. McMenamin (418)

198
Appendix E—Physician Participation in Medicaid ● 199

table E-1 (5,430,431,489,593). Since the data in table

E-1 are all survey-based, the reported rates of participation and reported practice shares devoted to Medicaid patients are very likely overstated. Adjusting the

practice share estimates by the ratio between actual

practice share and reported practice share found by

Kletke, et al. (343)—i.e., 0,5894—yields a mean practice share of 9.8 percent for pediatricians and 5.9 percent for OB/GYNs in 1984. There is no similar adjustment factor available for the willingness-to-participate

measure, so that measure of participation cannot be

adjusted.

Information on pediatricians’ participation in Medicaid from a 1978 American Academy of Pediatrics

survey is presented in table E-2 (127). Pediatricians

were asked two questions: 1) whether they were accepting new non-Medicaid patients, and 2) if so,

whether they were accepting all new Medicaid patients. Those who answered yes to both questions were

considered to be “full participants” in the Medicaid

program. Wide differences in these rates were found

among the 13 States included in the survey.

Table E-3 summarizes data available from a survey

by the Health Care Financing Administration and National Opinion Research Corp. on Medicaid particiTable E-1. —Survey-Based Data on Recent Trends

pation of OB/GYNs by region in 1978 and 1984. That

table shows substantial regional variation in rates of

reported participation. Furthermore, it indicates a

reversal in rankings of the regions between 1978 and

1984. In 1978, the Northeast had the second highest

OB/GYN Medicaid participation rate; in 1984, it had

the lowest. Data from the 1984 survey by the Health

Care Financing Administration and National Opinion

Research Corp. also show that rural areas have higher

OB/GYN participation rates than urban areas. Whereas

85 percent of OB/GYNs not located in Standard Metropolitan Statistical Areas ( SMSAs ) reported participating in Medicaid, only 70 percent of OB/GYNs located in SMSAs reported participating.

The data presented in tables E-1 to E-3 allow several

●

●

●

●

observations:

OB/GYNs lag behind other specialties in Medicaid participation, and pediatrician participation

is about average among the specialties.

OB/GYN participation increased modestly over

time between 1978 and 1984.

Pediatrician participation increased slightly between 1978 and 1984.

There exists substantial regional variation in Medicaid participation rates of OB/GYNs; this variin Medicaid Participation, by Physician Specialty

Percentage of participating

physicians’ practice share

Percentage of physicians who participate devoted to Medicaid patients

Specialty

——

1976a 1978b1983C 1983d 1984e 1976a

1978b 1983d

1984e

All physicians ., ... . . . . . . . . . . . . 76.5 82.8 11.9 9.1 - ‘

--

Pediatrics ... . . . . . . . . . . . . . . . . 73.6 76.9 82 81.5 10.8 14.1 14.7 16.7

Obstetrics/gynecology . . . . . . 60.0 64.4 46 72.2 9.7 8.4 10.0

General practice ... . . . . . . . . . . 71.4 75.1 67 80.4 11.6 13.1 10.6

Family practice ... , . . . . . . . . . . . . . 67 86.8 10.6

Internal medicine. . . . . . . . . . . . . . . . . 66.5 79.8 80.4 7.9 13.2 7.6

Cardiology . . . . . . . . . . . . . . . . . . . . . . 68.1 85.5 6.9 6.3

Other medical specialties . . . . . . . . 84.3 7.1

General surgery . . . . . . . . . . . . . . . . 73.9 90.3 87.1 11.5 13.4 11.6

Orthopedic surgery . . . . . . . ... 81.4 88.3 9.8 6.8

Ophthalmology. . . . . . . . . . . . ... , . 82.0 87.0 13.2 6,4

Urology . . . . . . . . . . . . . . . . . ... 88.9 92.9 3.2 9.1

Other surgical specialties ... ... . 82.5 6.9

Psychiatry . . . . . . . . . . . . . . ... . 57.8 60.0 8.0 5.9

Anesthesiology . . . . . . . . . . ... . . 97.2 9.3

Pathology . . . . . . . . . . . . . . . . . . . . . 91.9 7.9

Radiology . . . . . . . . . . . . ... . . . . . . . 94.2 8.9

Other specialties . . . . . . . . . . ., . . . . . 84.7 10.0

‘F A slOan J cromwell, and J B M Itchell, Prlvafe Phys/c/.arrs and PuMIc Programs (Lexl n gton, M A D C Heath & CO , 1978) SU rvey quest Ion I n the I ast week, what

percentage of wslts were with Med!ca!d patients?

bJ B Mitchell and R Schurman, Access to Private Obstetrics/Gynecology Services Under Medlcald Med/ca/ Care 22(11] 1026-1037, 1984

cAlan Guttmacher tnstltutePhyslcl an Survey 1983, u n pu bll shed data on phys!c Ian parttc I pat Ion I n Medlcatd New York, NY, 1983 Survey question In your private prac

tlce, do you accept Medlcald reimbursements for deliveries?

dJ D perloff, P R Kletke and K M Neckerman, “Trends In Pedlatrtclan Parttclpatlon In State Medlcald Programs, Med/ca/ Care 24(8) 749.760, 1986

‘J Mitchell Health Care Flnanc!ng Admlrlstrallon/N ational Oplnlon Research Corporation Phystclan Prac[lce Costs and Income Survey 1984.85 “ unpublished data,

Center for Health Economics Research Chestnut HIII MA, 1986

SOURCE Off Ice of Technology Assessment 1988
200 . Healthy Children: Investing in the Future

Table E-2.— Percentage of Pediatricians Considered

“Full Participants” in Medicaid, by State, 1978

Percentage of pediatricians

considered full participants

Massachusetts. . . . . . . .

Nebraska. . . . . . . . . . . . .

Colorado . . . . . . . . . . . . .

Georgia . . . . . . . . . . . . . .

Oklahoma . . . . . . . . . . . .

Indiana . . . . . . . . . . . . . .

California . . . . . . . . . . . .

lowa. . . . . . . . . . . . . . . . .

Maryland . . . . . . . . . . . . .

Texas. . . . . . . . . . . . . . . .

New York . . . . . . . . . . . .

Tennessee . . . . . . . . . . .

Pennsylvania . . . . . . . . .

100%

94

87

85

85

80

78

76

68

61

60

59

32

aFull ~artlclpants were physicians who said that they were accepting new non”

Medicaid patients and were also accepting all Medicaid patients.

SOURCE S Davidson, J Perloff, P Kletke, etal , “Medlcald Part ictpat!on Full

and Llmlted Parflclpants, Ped/atr/cs 72552.559 1983 Reproduced by

permission

ation appears to have grown in the 6 years between 1978 and 1984.

● Rural areas have higher OB/GYN participation

rates than urban areas.

Table E-3.—Regional

The modest improvement over time in OB/GYN

participation in Medicaid is consistent with recent

trends in the supply of physicians in this specialty relative to the demand for their services. Table E-4 shows

that both the ratio of OB/GYNs to Medicaid women

and to the total number of births in the United States

increased between 1978 and 1984. The increasing supply of physicians would, all other things remaining the

same, encourage increased participation in Medicaid.

In addition, table E-4 shows that the ratio of participating OB/GYNs to Medicaid women has increased

dramatically (by 39 percent) in the period 1978 to 1984

(due in part to reductions in the size of the Medicaid

population caused by eligibility limitations imposed

in the early 1980s).

Trends in physician participation in Medicaid since

1984, while unmeasured, may not have continued in

the same direction. Increases in the cost of running a

practice discourage physicians from serving a Medicaid population with low fees, In the past 5 years, all

physicians, but particularly OB/GYNs, have experienced rapid increases in malpractice insurance premiums.

Between 1983 and 1985, the average cost of physician

Variations in OB/GYN Medicaid Participation Rates, 1978 and 1984

Percentage of OB/GYNs Mean percentage of practice share

who participate devoted to Medicaid patients

1978a 1984b 1978a

1984b

Northeast . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 66.20/o 62.20/o 8.6 7.3

North Central . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 69.2 82.9 9.6 11.8

South . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 60.4 71.0 6.2 9.6

West . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63.1 81.8 10.9 14.2

Total ... , . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 64.40/o 72.20/o 8.40/o 10.00/0

aD.ata from J B Mitchell and R Schurman, “Access to Private ObstetricslGynecology Serv!ces Under Medicaid, ” kfed~cal Care 22(11) 1026-1037, 1984

bJ Mitchell, Health Care FinarlClng AdMinlStratlOn/NatlOnal CJplnlon Research Corporation, Physlclan praCtlCC3 coStS and lnCOMe .%rVey 1984 -85,” unpublished data,

Center for Health Economics Research, Chestnut HIII, MA, 1986

SOURCE” Off Ice of Technology Assessment, 1988

Table E-4.–Ratio of OB/GYNs to Female Medicaid Recipients and to Total Number of Births, 1978 and 1984

OB/GYNs per 1,000 Participating OB/GYNs

female Medicaid per 1,000 female Medicaid

recipients (15-44 yrs)a

recipients (15-44 yrs)b OB/GYNs per 1,000

0/0 increase 0/0 increase births in the United States

1978 1984 1978-84 1978 1984 1978-84 1978 1984

Total United States . . . 4.30 5.30 230/o 2.80 3.90 39% 7.2 7.3

Northeast . . . . . . . . . . . . 4.33 6.59 520/o 2.87 4.10 420/o 10.1 10.1

North Central . . . . . . . . . 4.52 4.53 0% 3.13 3.76 20% 6.0 6.5

South . . . . . . . . . . . . . . . . 4.54 5.18 14 ”/0 2.74 3.67 34% 6.8 7.0

West , . . . . . . . . . . . . . . . . 3.88 5.02 290/o 2.44 4.10 680/0 6.9 6.7

aData On ratio of OB/GYNS to female Medicaid recipients from J B Mitchell and R. Sclwrrnan, “Access to Private Obstetrics/Gynecology Services Under Medlca!d,”

Medma/ Care 22(11) 1026-1037, 1984; and J Mitchell, “Health Care Financing Administration/National Opln!on Research Corporation, PhysicIan Practice Costs and

Income Survey 1984 -85,” unpublished data, Center for Health Economics Research. Chestnut HIIIs, MA, 1986.

bDa

ta on ratio of OB/GyNs t. total number of births from American Medical Association, Physfc/an Ctraracteristics and ~k?ribUllOn In the U.S. 7984 Edition (Chwm

IL 1985), American Medical Association, Ptrys/c/an Characfer/sf/cs and Distribution In the U. S.. 1979 Edition (Chicago, IL 1980), U S. Department of Commerce, Bureau

of the Census, Sfat/stica/ Abstract of ttre U S 1986 (Washington, DC 1985); U S. Department of Commerce, Bureau of the Census, Statistical Abstract of the U.S

1979 (Washington, DC 1979)

SOURCE Off Ice of Technology Assessment, 1988
malpractice insurance doubled (650).

practice insurance premiums for all

from 3 to 4 percent of average gross

Appendix E—Physician Participation in Medicaid ● 201

The cost of malphysicians went

income between

1982 and 1984; for OB/GYN-s, ‘malpractice insurance

premiums increased from 5 percent to 8 percent of

average gross income during that period, and for pediatricians, they stayed the same at 2 percent (650).

Other things being equal, the rapid increase in costs

of malpractice insurance unaccompanied by fee increases from Medicaid, should have a deleterious effect on participation. How the opposing forces of increased physician supply and increased practice costs

play out in terms of physicians’ willingness to serve

Medicaid patients today is an empirical question that

cannot be answered at present.

Data from California do provide some limited insights into access of Medicaid patients to private pediatric and obstetrical practices in the period 1981 to

1985 (418). The number of pediatricians’ practices that

actually received Medicaid payments per 1,000 eligible Medicaid children (under 21 years of age) in California remained stable from 1981 to 1985, and the

number of OB/GYN practices receiving Medicaid payments per 1,000 eligible women between 15 and 44

years old actually increased slightly in that period (see

table E-5). These data suggest that access to care in

private practice did not decline markedly in the 1981

to 1985 period, at least in California (418).3 So, while

‘These re~ults are not incor-i~istent wtth a reduct]on In the actual number

of part] c]pat]ng practices ( clef]ned here as pract]ces actually recelvtng pay’-

ments trom \4ed]caldI in the State during that time period, because the number of el]g]bles decreased dur]ng the pervod as well In tact, the number of

OB GYN partlclpat]ng pract]ces decllned from 1,867 to 1,719 from lQ81 to

1985, while the number ot partlc]pat]ng pediatrics pract]ces Increased from

1,409 to 1,b33 The greatest part of the decline m part] c]patmg OB GYN practices In Cal] fornla occurred In lust two counties, however (418).

Table E-5.—California Physician Practices Receiving

Medicaid Payments per 1,000 Eligibles, 1981-85

1981 1982 1983 1984– 1985

Pediatrician practices

per child 20 years or

younger . . . . . . . . . . . . . . . 1.15 1.24 1,24 1,20 1,22

OB/GYN practices per

eligible female aged

15 to 44 . . . . . . . . . . . . . 2.73 2,86 2.92 2.71 2.80

SOURCE State of California, Department of Health Care Services, Medical Care

statistics Unit, unpublished statistics on physician practices receiving Medicaid payments, Sacramento, CA, 1986

Medicaid patients’ access to private care may be limited, the available evidence to date suggests that it has

not deteriorated badly over the past 5 years in the State

as a whole, despite deterioration in the relative fees

paid by Medicaid and increases in practice costs.

To summarize, the available information on physician participation in Medicaid is limited and largely

insufficient to address the question of access. Because

of the high interstate and interregional variation in

physician participation, it is very likely that some populations of Medicaid recipients are without access to

private obstetrical and pediatric services, while others

are able to ob ain qualified services.
Appendix F

Ambulatory Tocodynamometry

Introduction

About 8 percent of all live births in the United

States, on the order of 300,000 per year, occur before

37 weeks of gestation. A large percentage of these

premature, or preterm, babies are of low birthweight,

accounting for roughly half the low birthweight babies born each year. Many of these infants require intensive care, some will die in their first month or year

of life, and some will have permanent disabilities as

a result of their premature birth. Ambulatory tocodynamometry is designed as an aid to secondary prevention, an “early warning system” for detecting preterm labor, with the hoped-for effect of greater success

of stopping early labor from progressing to an immediate birth.

The ambulatory tocodynamometer has an electronic

sensor (a resistance strain gauge of sorts) that detects

uterine contractions through the wall of the abdomen.

The device is worn by a pregnant woman, strapped

on with a belt. Signals from the device are stored in

an attached recorder and later transmitted by telephone line to be plotted on a paper strip so the pattern of activity can be interpreted by a nurse or other

trained professional. If preterm labor is diagnosed

more than about 4 weeks before the due date (full term

considered to be 36 weeks gestation), attempts to stop

the labor can be made, assuming there are no medical

reasons for the pregnancy to end early. How well

tocodynamometry will play a part in averting preterm

births still is unsettled, though information is accumulating as studies of the device are completed.

There remain considerable uncertainties about the

appropriate use of ambulatory tocodynamometry in

clinical practice, though current information suggests

that it may be effective under certain conditions.

Whatever the clinical usefulness of ambulatory tocodynamometry, it is clear that research about the natural history of uterine activity in pregnancy, normal

and abnormal, could benefit greatly from the information-gathering abilities of the device.

The underlying causes and events precipitating most

cases of preterm labor are not well understood, and

attempts at primary prevention of preterm labor—

avoiding or averting its occurrence at all—have been,

by and large, unsuccessful. It is possible, however, to

identify some women who have a high likelihood of

the premature onset of labor, based on their previous

obstetric history and some characteristics of their current pregnancy. The preexisting conditions that set

apart women at high risk for preterm labor include

preterm labor or preterm birth in a previous pregnancy

and certain abnormalities of the uterus. In the current

pregnancy, an initial episode of preterm labor, twin

(or higher multiple) pregnancy, cervical dilation, and

“uterine irritability” (excessive uterine activity, not

necessarily with full, high-amplitude contractions characteristic of labor) indicate a high risk of preterm labor. Many episodes of preterm labor and subsequent

preterm births occur among a much larger pool of

women without those specific risk factors. Clinically,

ambulatory tocodynamometers have been used mainly by the former group of women—those with known

risk factors. There has also been interest in developing a means to use the devices for identifying women

from the larger group who are likely to experience preterm labor.

Another strategy that addresses the problem of preterm labor and might be placed in the category of tertiary prevention—trying to prevent or minimize untoward consequences of preterm labor—is the aggressive

treatment of premature infants. Although large gains

have been achieved through neonatal intensive care,

the margin for further improvements is shrinking, and

the already high costs are still rising. ’

Strategies for Stopping Preterm Labor

The tocodynamometer itself is an informationgenerating technology that can be used to diagnose

preterm labor in early stages, and its potential for improving the outcomes of preterm labor depends entirely on the availability of interventions to alter the

natural course of events. Studies adequate to characterize the efficacy and safety of nearly all the available “tocolytic, ” or labor-stopping, interventions are

lacking, though some approaches appear to be more

effective than others.

One of the impediments to evaluating tocolytic interventions has been the fact that women do not readily recognize the very early stages of labor, when it

is generally believed that the process is most amenable to intervention (Newman, Gill, Wittreich, et al.,

1986). Once significant physical change in a woman’s

I For information on the costs and effectiveness of neonatal lntenslve care

uruts ( NICUS) see ch. 2 and OTA’S 1987, case study entitled Neona(a) Znten -

slve Care for Low, Birthwe@f In/ants: Costs and Effecf] veness (U. S. Congress, OTA, 1987).

202
Appendix F—Ambulatory Tocodynamometry • 203

cervix occurs, a preterm birth may be unavoidable,

given the currently available tocolytic strategies.

The idea for using ambulatory tocodynamometry

developed out of the apparent success in certain highly

motivated women of “self-palpation” of the uterus to

detect contractions before the women would normally

become aware of them. The aim was to shift the detection of labor to an earlier point when successful

long-term tocolysis is thought to be more likely, The

disappointing overall success rates of tocolysis, as reported in the literature, stem from a combination of

the low probability of stopping labor in advanced

stages and the effectiveness of the interventions. Using

tocodynamometry in studies of tocolytic interventions

could help clarify the effects of the interventions themselves when conditions appear more favorable for success. The discussion of tocolytic interventions presented here reflects the current literature and the

experience with these techniques as they have been

used generally.

The idea of intervening to stop the course of premature labor, or to prevent its occurrence entirely, is not

new, and a number of pharmacologic and physical approaches have been tried over the years. Hydration

is usually tried, with or without other measures. Some

classes of pharmacologic agents—e.g., tranquilizers,

spasmolytics, opiates, anesthetic agents—are no longer

considered to be effective. There still is some minor

interest in ethanol and hormonal agents (e. g., progesterone) for stopping preterm labor. Estrogen, in the

form of diethylstilbestrol (DES), was at one time considered useful (on the theory that estrogen deficiency

was the cause of preterm labor), but this substance is

no longer used. The earliest approach to attempt prevention of preterm births, and one still current despite

a lack of evidence of efficacy, is bedrest. Cervical cerclage, a surgical procedure which was introduced

about 40 years ago in which the mouth of the cervix

is physically cinched together with a suture, also is still

used, though its popularity has waned.

Tocolytic Drugs

Beta-mimetic drugs and magnesium sulfate are the

most recent, and probably the most effective, drug interventions for stopping labor. Ritodrine hydrochloride, a beta-mimetic, is the only drug approved by the

U.S. Food and Drug Administration (FDA) for the inhibition of uterine contractions in threatened preterm

labor. Developed specifically for this use and tested

in clinical trials (including randomized trials) during

the 1970s, ritodrine was approved in 1980, one of a

small number of drugs approved in recent years for

use during pregnancy (Barden, Peter, and Merkatz,

1980). Another beta-mimetic, terbutaline, a commonly

prescribed bronchodilator used by asthmatics, is

widely used for tocolysis, though it has not been approved for that indication.

Beta-mimetic drugs act by altering the cascade of

events that leads to contraction. “Receptors” on the

surface of smooth muscle cells play a role in mediating the ionic balance of the cells, including the influx

and outflow of calcium ions, which are instrumental

in the events leading to muscle contraction. Ritodrine

and terbutaline selectively stimulate receptors that predominate in uterine muscles—’’beta2 receptors”-

although they also affect the “betal1 receptors” of the

heart muscle and other organs. Stimulation of the beta1

receptors results in quickening of the heart beat, one

of the major side effects of beta-mimetic drugs. All

beta-mimetics may stimulate a wide range of organ

receptors, which may cause severe adverse effects on

the cardiovascular system.

A recent overview of randomized trials of betamimetic drugs concluded that they can be effective in

halting preterm labor in the short term—e.g., for 24

to 72 hours—but there is insufficient evidence from

those trials to conclude anything about their efficacy

in the longer term (King, Keirse, Grant, et al., 1985).

Part of the problem in interpreting those trials to understand the potential of the tocolytic agents used is

that in most women, preterm labor is far advanced

before it is recognized, and tocolysis fails. The pertinent question with the use of tocodynamometry is

whether tocolytics will, as is often assumed, be more

effective overall when preterm labor is diagnosed in

earlier stages. Randomized clinical trials of the tocodynamometry/tocolysis combination will be required

to adequately characterize the safety and effectiveness

of this approach. Potential negative effects include

overdiagnosis of preterm labor, resulting in unnecessary tocolytic treatment, and treatment of women in

whom preterm labor would resolve spontaneously.

Bedrest and Cervical Cerclage

In the realm of strategies to avoid the onset of preterm labor, at least one randomized trial has been conducted of hospital bedrest. That study compared hospital bedrest against hospitalization as needed from 32

weeks of gestation for women with twin pregnancies.

Hospital bedrest conferred no benefit at all in preventing the occurrence of preterm labor. In fact, preterm

deliveries were more common among women in the

group randomized to compulsory hospitalization than

among women in the ambulatory group (Saunders,

Dick, Brown, et al., 1985). Despite this negative finding and no reliable positive studies, routine bedrest still

is commonly prescribed.
The first randomized clinical trial of cervical cerclage

was published in 1984 (Lazar, Gueguen, Dreyfus, et

al., 1984). Because cervical cerclage has been so widely

accepted by obstetricians for women with a high-risk

profile for premature delivery due to cervical incompetence, the trial included only women at “moderate”

risk. In the end, the rate of preterm births was no

different in the cerclage and the control groups. The

trial had two important results. First, it provided clear

evidence that cervical cerclage was not effective in reducing the rate of preterm births among women at

average risk. Second, it raised enough doubt about the

usefulness of the procedure to plan a further trial of

cervical cerclage in women at high risk.

Women at high risk of preterm delivery were

recruited for the second randomized trial of cervical

cerclage (Rush, Isaacs, McPherson, et al., 1984), The

findings parallel those of the first trial. No evidence

of benefit, either in lowering the preterm delivery rate

or improving survival, was detected. In several ways,

women with cerclage fared worse than those without,

having longer hospital stays (excluding the time spent

in hospital for the cerclage itself), receiving more tocolytic drugs, and having more fevers (though the latter

two differences were not significant statistically).

It still is possible that cerclage may be beneficial to

a specific group of women with cervical incompetence,

but its use has not been so limited. Further studies may

elucidate an appropriate role for this procedure.

Risk Factors for Preterm Labor and

Preterm Birth Prevention Programs for

High-Risk Women

Certain factors have been identified that set apart

women at high risk for preterm labor, some of the factors present before the pregnancy and some related to

what is experienced during the pregnancy. Preexisting risk factors, some being stronger predictors than

others, include: preterm labor in a previous pregnancy,

uterine anomalies, being a “DES daughter” (a woman

exposed in utero to the drug DES during her mother’s

pregnancy), and previous spontaneous or therapeutic

abortions. Risk factors associated with the pregnancy

itself include: twin (or higher multiple) pregnancy (also

called “multiple gestation”), arrested preterm labor in

the current pregnancy, and recurring uterine “irritability, ” or infection. (There also are sociodemographic

factors that seem to be associated with a higher risk

of preterm birth—e.g., teenage low-income women are

more likely to experience preterm labor—but these factors are not such strong predictors on an individual

basis. )

Using this type of information, investigators have

developed risk scoring scales to identify women at high

risk of preterm labor. The French obstetrician Dr.

Emile Papiernik developed such a scale in the late

1960s, and he applied it in an area of France in a broadbased educational program aimed at bringing down

the rate of preterm births during the early 1970s. Although the success of particular aspects of the French

program could not be evaluated independently, the

preterm birth rate did drop gradually over a 12-year

period from 5.4 to 3.7 percent. That drop suggests the

possibility of influencing the preterm birth rate (Papiernik, Bouyer, Dreyfus, et al., 1985); however, other factors might have been changing over time as well, and

the change cannot be clearly attributed to any particular factor.

In the late 1970s, Dr. Robert Creasy, who built on

Papiernik’s scoring system, introduced the first preterm birth prevention program in the United States

based on self-detection of uterine contractions (Herron, Katz, and Creasy, 1982). That program laid the

groundwork for ambulatory tocodynamometry. Specifically, Creasy and his colleagues used a risk scoring method, which included both medical and sociodemographic factors, to divide their population of

patients into low- and high-risk groups. Women in the

high-risk group were educated about the early signs

and symptoms of preterm labor and were taught the

technique of self-detection of painless contractions by

palpating the uterus, These women had weekly cervical monitoring at a special clinic. The clinic staff also

had special training and education to optimize their

responses to the women in the program and to recognize the subtle symptoms seen at the onset of preterm

labor. The low-risk women got their usual obstetric

care. No controlled studies were carried out in conjunction with this program,

During the first year of the program, 24 (2.5 percent) of the 974 low-risk and 30 (17 percent) of the 176

high-risk women entered labor prematurely (before 36

weeks gestation). Beta-mimetic drugs were given to

most of the women (those who had not progressed beyond specific stages of labor and for whom there were

no contraindications for continuing the pregnancy)

with final results of full-term deliveries for 23 of the

high-risk women and for 15 of the low-risk women

who had experienced preterm labor.

The overall preterm birth rate (including those

women who had intentional preterm deliveries for

medical reasons) during 1979, the year after the program was initiated, was 2.4 percent. The preprogram

1977 rate was 6.75 percent. The authors also reported

that the annual rates from 1977 through 1979 at an
Appendix F—Ambulatory Tocodynamometry ● 205

affiliated institution remained above 6.5 percent. While

no causal inferences could be drawn because there was

no control population, it is possible that the program

accounted for some or all of the change. In any case,

the generalizability of results from the program is

limited because the population enrolled was a selfselected, highly motivated group of women,

The positive result of this program, however, was

to spur the initiation of a randomized trial of the

Creasy program at five institutions around the country, sponsored by the March of Dimes. The results of

this study are not yet available.

Development and Current Use of

Ambulatory Tocodynamometry

The ambulatory tocodynamometer is intended as an

adjunct to a preterm birth prevention program such

as Dr. Creasy’s. This device should be more reliable

than self-detection of early labor and would allow

women to stay at home when they otherwise might

be hospitalized or have emergency room or office

visits. Three such devices have been developed in the

United States. One, TermGuard®

, made by the Tokos

company, was developed by Dr. Michael Katz, who

was a fellow of Dr. Creasy’s, and the other devices

were developed by the Litton and Healthdyne companies. All three ambulatory devices are considered

“substantially equivalent” to hospital-based stationary

tocodynamometers that have been marketed since the

1950s, and the manufacturers have obtained FDA

clearance on that basis. Currently, these devices cannot be advertised as being effective for use in detecting preterm labor or in preventing preterm births, but

only for detecting uterine activity, the function of the

stationary devices. The Tokos company is seeking

FDA approval to market TermGuard® with a claim

that the device prevents preterm births, based on completed and ongoing clinical trials. On the basis of current approval, however, thousands of pregnant women

have been monitored over the past few years, most

with Tokos’ equipment.

Although there are differences in the capabilities of

the three brands of tocodynamometer, the most important difference among them is in the way they are

marketed. While the Litton device is sold to be used

by independent practitioners or institutions, Tokos’

TermGuard® is marketed not simply as a device, but

as a service, to be prescribed by doctors. (Healthdyne

has followed Tokos’ lead, though it is quite new to the

market. ) Once the service has been prescribed, nurses

employed by Tokos at special centers interact with patients, teaching them how to monitor, talking to them

each day, and receiving their monitoring transmissions. In general, patients on the Tokos system are

asked to monitor twice daily for an hour at a time,

during which time they may move around. With the

“sensor” strapped on, uterine activity is detected, and

the electronic signals are stored in the attached recorder. During telephone contact, the daily signals are sent

to the nursing center over an ordinary phone line and

printed out on a graphing tape, similar to the printout

in a hospital setting. The pattern of low- and highamplitude contractions is interpreted immediately after

transmission by a trained perinatal nurse.

Tokos nurses confer with the prescribing physicians

to define criteria for notifying them of unusual uterine activity and to inform them of when those criteria

are met. The notification criterion is typically four or

more contractions in an hour. Following notification,

the doctor decides on the appropriate action. If preterm labor is confirmed by physical examination (a

finding of cervical effacement), intervention with a

tocolytic agent may be prescribed.

Tokos does not currently sell its devices and therefore retains considerable control over how they are

used. Litton does not offer such a service and sells its

devices (including the monitors, recorders, and readout

units) outright. Most have been bought by hospitals,

private physicians, and private companies.

Tokos currently operates 30 nursing centers around

the United States and 1 in France. Since 1984, more

than 10,000 women have been monitored, an average

of 53 days each and at a cost of about $75 per day.

As of October 1987, 10 State Medicaid programs had

approved tocodynamometry for coverage (not all had

set reimbursement rates) and most of the major private insurance companies, including several Blue

Cross/Blue Shield plans, provided some coverage,

primarily for patients who have had preterm labor

stopped and been sent home from the hospital with

the device.

Studies of the Effectiveness

of Tocodynamometry

The first studies of ambulatory tocodynamometry

as part of a program for women at high risk of preterm delivery were carried out, as is often the case with

new technologies, by the device’s proponents, including one of its developers. These early studies, which

did have control groups but which did not use random allocation, had very positive results: significant

numbers of preterm births were avoided and no unintended adverse effects were found. They also answered

affirmatively some basic questions about the practicality of ambulatory tocodynamometry—e.g., can
206 ● Healthy Children: Investing in the Future

uterine activity patterns be accurately and reliably

transmitted over existing phone lines?

So far, few studies of ambulatory tocodynamometry in clinical practice have been completed, so available evidence on which to judge the effectiveness of

the technique is limited. In general, however, findings

from the more recent studies have been more modest.

All of the studies reviewed here involve the Tokos

service or a similar set of services, so the results cannot be interpreted as strictly attributable to the device

itself. In particular, there is a suggestion that the daily

contact between the pregnant women and the Tokos

nurses that is included in the service may account for

at least part of the benefit found in earlier studies.

Other differences in results among studies may be explained at least in part by other factors, including

underlying differences in study populations, e.g., in

the definitions of “high risk, ” in the effective use of

tocolytic interventions by physicians, and in the treatments given to the “control” groups.

The first report of ambulatory tocodynamometry

was published in August 1985 (Katz and Gill, 1985).

The authors aimed to answer basic questions about

the device itself (TermGuard®, Tokos Medical Corp. )

and the information it provides. First, do TermGuard®

readings correlate with readings from stationary external uterine activity monitors with regard to the frequency of contractions? Second, do TermGuard® external readings correlate well with readings from

internal uterine pressure catheters in measuring intrauterine pressure, a measure of intensity, during contractions? And last, can the device be used successfully

by a pregnant woman at home? Those questions were

all answered in the affirmative.

Questions about the overall effectiveness of tocodynamometry in preventing preterm birth have been

addressed in later studies, with more mixed results,

though generally positive findings. None of the studies

to date, however, has been free of major design flaws

or been large enough to give results that are unequivocal.

The first published evaluation of ambulatory tocodynamometry as part of a program to prevent preterm

births, carried out by the device’s developers and

proponents, appeared in December 1986 (Katz, Gill,

and Newman, 1986). The study reports the experience

of 76 women at very high risk of having a pre-term

birth as judged by their past obstetric history or the

existence of uterine anomalies. The birth outcomes for

these women were compared with those of a group

of 76 women who were matched on risk factors, parity, and age. Most of the women (87 percent of monitored and 82 percent of unmonitored) were given instruction about the signs of preterm labor and were

taught to palpate themselves for uterine activity.

About half the women in both the monitored and unmonitored groups went into preterm labor. All women

in preterm labor, except those with extreme cervical

dilation, were treated with intravenous ritodrine; then,

if tocolysis was successful, they were switched to oral

ritodrine or terbutaline. Overall, 67 of the 76 monitored women (88 percent) had deliveries at or beyond

37 weeks; 45 of the 76 unmonitored women (59 percent) reached at least 37 weeks.

In March 1987, a controlled study of ambulatory

tocodynamometry was reported (Morrison, 1987).2

The study compared the Tokos system (34 women)

with self-palpation (33 women) for monitoring uterine activity in a group of women at very high risk of

having a preterm delivery. Only women with one of

the following risk factors were eligible for entry into

the study: 1) multifetal gestation (meaning twin or

higher multiple pregnancy), 2) uterine abnormalities,

or 3) history of two or more preterm births. (These

criteria are more stringent than those used in the earlier

studies, resulting in a higher overall rate of preterm

labor in the study population. )

The tocodynamometry group wore monitors to record uterine activity twice daily for an hour at a time,

and both groups were instructed about the signs and

symptoms of preterm labor. Women in the tocody -

namometry group had regular daily contact with

Tokos’ nurses, and those in the self-palpation group,

twice weekly. All women were advised to call if they

had symptoms of preterm labor.

Overall, the results favored ambulatory tocodynamometry over self-palpation: 18 of the 33 women

in the self-palpation group, and 29 of the 34 women

in the group with tocodynamometers, carried their

pregnancies to term. About two-thirds of the women

in each group (22 in the self-palpation group and 24

in the Tokos group) had a diagnosis of preterm labor,

but more of the self-palpation women were farther

along in the course of labor than were the Tokos

women at the time of diagnosis. The investigators attribute the difference in overall outcome largely to the

greater success of tocolytic intervention (most with

magnesium sulfate, and a few with ritodrine hydrochloride) in the Tokos women because they were

treated in earlier stages of labor. Although this is a relatively small study, the results are quite striking and

appear to represent a positive effect of the Tokos system, though the true size of the effect cannot be estimated reliably.

‘Although the study is described as “randomized,” in fact, It was not

Women were allocated to one group or the other accord]ng to whether the

last digit of their hospital numbers were odd or even, Whether this affected

the results IS unknown.
Appendix F—Ambulatory Tocodynamometry ● 207

A second study comparing the Tokos system with

self-palpation appeared in September 1987 (Iams,

Johnson, O’Shaughnessy, et al., 1987). The advantage

of this study is that the self-palpation group had a level

of contact with the Tokos nurses similar to that of the

tocodynamometry group, so the difference in the interventions was narrowed as much as possible to the

device itself. The following risk factors qualified

women for entry into the study: 1) previous preterm

delivery, 2) twin pregnancy, 3) previous second trimester loss, 4) cervical cerclage in this pregnancy, 5)

uterine anomaly or DES daughter, and 6) bleeding after 14 weeks of pregnancy. The report states that 157

women were randomly allocated3 in a ratio of 1:2 to

either education and self-palpation (50 women, referred to as group E) or education and tocodynamometry (107 women, referred to as group EM).

The two groups had similar rates of preterm labor

(about 37 percent of the women), and the progress of

labor was not generally farther along in group E

women than it was among group EM women when

it was diagnosed. The rate of preterm birth was about

the same in each group (20.4 percent before 35 weeks

gestation in group E, and 23.5 percent in group EM),

and there were no significant differences in the rate

of successful tocolysis, gestational age, birthweight,

or days gained from first preterm labor to delivery between the two groups.

The conclusion from this study in this group of

patients is that tocodynamometry and self-palpation,

both accompanied by intensive nursing support, produced about equal rates of preterm birth in a high-risk

population. Because there was no group without intervention, the size of the effect relative to no intervention cannot be estimated directly. The investigators concluded that the role of “frequent and

supportive patient contact in preterm birth prevention”

should be given greater attention, and further that “the

role of ambulatory contraction monitoring has yet to

be defined.” The finding of no major difference in outcome between the two groups is difficult to interpret

because of the lack of a true control. The study does,

however, point out the need to clarify what elements

of monitoring—those centering on the device versus

those centering on the interaction between the patient

and provider—make a difference, as well as which

women are most likely to benefit from monitoring.4

Results of a third study of ambulatory tocodynamometry in high-risk women who have not yet had

an episode of preterm labor in the current pregnancy

‘The method of randomization ]s not given

‘A methodolog[c problem with the study ts that six women dropped out

t)t the study trom group E and n]ne from group ELI, and these women were

excluded trom the analysls; their exclus]on could have b]ased the results,

though lt [s Impossible to say’ whether this IS the ca~e

were presented at the 1987 meeting of the Society of

Perinatal Obstetricians (Porto, Nageotte, Hill, et al.,

1987).5 In this study, high-risk women were randomly

assigned to one of three groups. ” Groups 1 and 2 were

supplied with Tokos monitors and taught to use them,

and the third group had no special intervention. The

first two groups had daily contact with the Tokos

nurses and transmitted their recorded data to the

Tokos center, but the data were used to manage only

group 1. For group 2, data were not used for patient

management. A total of 136 patients were entered in

the trial, 44 in group 1, 46 in group 2, and 46 in group

3. The investigators excluded “noncompliant” women

from the analysis (3 women from group 1 and 4

women from group 2). The results indicated a similar

rate of preterm labor in all three groups, but a lower

rate of preterm deliveries in groups 1 and/or 2 compared with group 3 (reaching conventional levels of

statistical significance). The analysis was based on

small numbers of preterm births, however (4 in group

1, 6 in group 2, and 11 in group 3), and the exclusion

of the noncompliant women may well have had an effect on the analyses. It is not possible to draw strong

conclusions from this study.

Using Tocodynamometry To Screen

for Women at Increased Risk of

Preterm Labor

“Risk scoring” methods exist to identify women with

a high probability of delivering a preterm baby. Some

of the risk factors that go into these systems are discussed above, While a high percentage of the identified high-risk group will have preterm labor and go

on to a preterm delivery, the group that can be so identified is small, and in fact, approximately half of all

preterm births are to women not so identified, but who

are part of a much larger pool with a lower overall

risk of preterm birth. One potential use for the ambulatory tocodynamometer is as a method to “screen”

for women likely to proceed to preterm labor but who

have no specific risk factors. Three studies comparing high-amplitude uterine contraction patterns (the

type of contractions that occur at short intervals during labor and delivery) of women who experienced first

spontaneous labor preterm, at term, and postterm,

were presented at the 1987 annual meeting of the Society of Perinatal Obstetricians.7 Another recent study

looked at patterns of low-amplitude contractions

(which, when occurring frequently, are termed “uter-

‘Abstract only ava]lab]e

‘The random] zat]on scheme was not specltled

‘All available as ab~tracts on]>
208 ● Healthy Children: Investing in the Future

ine irritability”). One study in the first group (Main,

Katz, Chiu, et al., 1987) took a practical screening approach in which uterine activity of a group of lowrisk women was followed—measured with an ambulatory tocodynamometer for 1 hour once a week at

a clinic between 27 and 34 weeks gestation. The tracings were read by individuals with no knowledge of

the women’s status, and after the deliveries took place,

the tracings were analyzed according to the two groups

into which these women fell: 1) those who experienced

preterm labor (less than 37 weeks gestation), and 2)

those who had spontaneous labor for the first time at

term (37 or more weeks gestation). As early as 28

weeks gestation, the group of women who would go

on to preterm labor had a higher average number of

contractions per hour than did the rest of the women,

but the ranges of uterine activity between the two

groups overlapped considerably. According to the investigators, 12 of the 17 women who developed preterm labor would have been identified by a criterion

of five or more contractions in an hour anytime between 28 and 32 weeks gestation, It would also have

incorrectly picked out 34 of the 108 women who labored at term.

One of the other studies focused on a population

of women with known risk factors for preterm labor

who used ambulatory tocodynamometry as prescribed, monitoring for an hour twice daily (Tomasi,

Eden, Canlas, et al., 1987). Distinct differences in uterine contraction patterns, beginning at about 29 weeks

gestation, were found in the group of women who

would experience preterm labor compared with the

group who would go on to term or later.

Little detail was given about the population studied in the third report, but the data support a general

trend toward increased uterine activity among women

who will experience preterm labor several weeks before labor actually begins (Nageotte, Dorchester,

Porto, et al., 1987).

A study of low-amplitude contractions (Newman,

Gill, Campion, et al., 1987) was undertaken because

these contractions occurring at high frequency, a condition called “uterine irritability, ” are considered a risk

factor for preterm labor. In this study, 92 women at

high risk of preterm labor and 50 at low risk were monitored with the Tokos system. The authors found that,

in fact, many women who experienced low-amplitude

contractions for a relatively high proportion of the

time (more than 30 percent of the time) did enter labor prematurely. For a number of women, preterm labor was not preceded by that pattern, however. Those

who demonstrated this pattern less than 10 percent of

the time were much more likely to have term labor.

Although the findings are of clinical and biologic interest, the authors concluded that a pattern of highfrequency, low-amplitude contractions could not be

used as a screening technique because, overall, such

a finding was not highly predictive of preterm labor.

Net Health Care Costs of

Tocodynamometry

It is relatively easy to develop a simple model to determine the net monetary costs of ambulatory tocodynamometry, but it rests on a major assumption

about the level of effectiveness of the device and associated services in reducing the frequency of preterm

delivery. Basically, the costs of monitoring a group

of women must be balanced against the savings in neonatal care for the percentage of women whose pregnancies are prolonged. Costs of monitoring can be

measured directly, and savings can be measured as the

average costs of treating preterm babies in neonatal

intensive care units (NICUs). The preterm birth rates

in different groups of women and the success rate for

arresting preterm labor must be estimated from data

from the few comparative studies of tocodynamometry that have been carried out and from other women

who have been monitored. Net costs would decrease

the more “efficiently” tocodynamometry were used,

i.e., the larger the percentage of women in the monitored group who experience preterm labor, the greater

the benefit would be. With a low rate of preterm labor, many more women would be monitored than

would benefit, making a greater contribution to the

cost side than to the savings side.

The following example uses data from Tokos’ clinical experience (Tokos, 1987) and from studies of

women at high risk of preterm labor and preterm delivery. Among a group of women who either have had

a previous preterm delivery, have a uterine anomaly,

or have a multifetal gestation, about 40 percent would

be expected to have a preterm delivery, given accepted

obstetric practice in the United States. About 30 percent would be expected to experience preterm labor,

of whom 80 to 90 percent would go on almost immediately to a preterm delivery. The remaining 10 to 20

percent would extend their pregnancies by an average

of about 4 weeks. Of those with no preterm labor,

about 20 percent would have an intentional delivery

before term.

In this example, the Tokos service could potentially

extend the pregnancies of women who experience preterm labor, but for whom tocolysis would be too late

without tocodynamometry (the 80 to 90 percent of 30

percent), and also extend for more than 4 weeks the

pregnancies of those 10 to 20 percent (of the original
Appendix F—Ambulatory Tocodynamometry ● 209

30 percent) whose labor would have been successfully

stopped initially without Tokos. The effectiveness

data, which come largely from nonrandomized studies

and the patient files of the Tokos Medical Corp., currently are inadequate to select a number with confidence, but the existing data are consistent with a reduction in the overall preterm delivery rate from about

40 percent to about 25 percent. This reduction is assumed in the following analysis.

Net health care costs for society would be equal to

the difference between the total cost of monitoring

high-risk women and the savings resulting from reduction in the care required for the extra 15 percent of

deliveries that would be carried to term as a result of

the program. Using average figures, the cost of monitoring 100 women (for an average of 53 days at $75

per day) would be $397,500. The cost avoided for caring for the 15 babies brought to term, had they been

born instead at the time of preterm labor, can be considered a savings. Costs include not only the extra care

needed around the time of birth, but also some excess

hospital readmission during the first year of life particularly and the long-term costs of caring for the

proportion of preterm babies with lifelong handicaps

due to prematurity. In addition to direct costs to society, families may bear extra emotional and financial

costs at the birth of a premature baby, particularly one

with severe disabilities.

Using data from the State of Maryland, OTA estimates the extra cost of hospital care for each preterm

baby (assuming that all would have weighed less than

2,500 grams at birth) at between $3,763 and $5,236. ’

Extra initial physician costs are estimated at between

$475 and $1,487 per baby. Rehospitalization costs in

the first year of life are an estimated $802 extra per

preterm baby. The estimated cost of long-term care

per low birthweight baby (up to age 35) is between

$9,000 and $23,000. Based on these figures, the monetary cost of each low birthweight birth, therefore, totals between $14,040 and $30,525.9 The potential savings in delaying 15 births (from the original 100 above)

would be between $210,600 and $457,875, so there

may or may not be a cost-saving when compared to

the $397,000.

“The tlgures tor ]n]tlal and tlrst-year costs used In this analys]s are based

on data trom the State of kfarylanci See ch. -I of this report for details. Deta]ls of the long-term care costs are ~lven In app G. Hospital and physlclan

costs are given In 1Q80 dollars

“The tlgures are not charges, but estimates ot resource costs Many analy

ses ot the costs of caring for preterm babies have been based on actual charges,

wht~h may be ct)ns]derably h]gher than resource costs, thus alter]ng the balance In a cost analys[s OTA s analysl~, tr(~m the wcletal point ot view, IS

more appropriately based c~n costs The dlstrlbutlon of birthwe]ghts at ?8

to 31 weeks ge~tat]on wa~ taken trom U S natlona] ~]tal ~tatlstlcs tor 1Q85

( i-l S. [)HHS I)HS 1Q87 I ,4 welght(d average h~~~p]tal cc,st per preterm birth

was cieri~ed by allocating blrthwelght -speclf]c co~ts by the proportion ot birth<

at 28 t(j 3 I ;%,ec~s ]n each blrthwelght cate~or>

In a complete analysis, several other costs must be

considered, some of which would fall on the net cost

side and others on the saving side. Extra costs would

be incurred for women treated for preterm labor detected initially through tocodynamometry, in whom

the labor would not otherwise have been detected and

which would not have progressed to an immediate

birth. The potential rate of such “false positive” diagnosis is not known at present. Hospitalization for initial tocolysis, plus oral tocolysis after discharge would

be included. Potential adverse effects of tocolytic

agents on the mother and/or fetus, which currently

are poorly known, might also eventually become

costly in dollars and certainly have human costs.

An additional benefit of tocodynamometry, which

might result in cost savings, is the possibility of discharging women from the hospital on oral tocolytic

agents earlier than they might otherwise be. In this

case, the tocodynamometer may be used to calibrate

the tocolytic dose and give feedback on uterine activity otherwise available only while the woman is hospitalized. It is possible also that women who have had

a successfully arrested episode of preterm labor may

be able to return home on ambulatory tocodynamometry, rather than be hospitalized for the remainder of

the pregnancy.

Summary

As a machine, the ambulatory tocodynamometer

must be seen as a valuable information-generating

technology. It provides reliable information about the

activity of the uterus during pregnancy. It has already

increased knowledge about that activity in its use as

a research tool. The machine does not, however, allow interpretation of the information it produces in

a way that would provide a definite diagnosis of preterm labor. As more experience with the device is

gained, using the information for diagnosis should improve. The most uncertain part of all is deciding on

a course of action once preterm labor is detected, presumably early in its course, with daily tocodynamometry. Certain drugs appear to be effective in stopping

labor from proceeding to delivery, but the evaluations

have been spotty. Part of the difficulty in testing interventions in the past has been that most women are

not aware that labor has begun until it has progressed

to a point that it cannot be stopped. Interventions have

been attempted anyway, mostly unsuccessfully. Older

studies, in which most women were treated far along

in labor, may not be relevant to the use of tocolytic

interventions with early detection. Until there is a direct demonstration of the effectiveness of early tocolysis in a program that uses tocodynamometry, however, the actual value of the system cannot be judged.
210 . Healthy Children: Investing in the Future

Unfortunately, public sector research has focused

almost entirely on learning about the natural history

of labor, while the few intervention trials have been

supported largely by manufacturers.

Ambulatory tocodynamometry may have the potential for significantly reducing preterm birth rates

and perhaps saving money, if used in appropriate populations and if interventions are applied appropriately.

It might also foster the development and evaluation

of more effective means of tocolysis. The “ifs” cannot

be taken as inevitable, however, and the consequences

of the “if nets” include much greater use of tocolytic

agents, with their known and unknown adverse effects, as well as potentially great cost. As more and

more physicians use the Tokos service, and as more

companies enter the market, the widespread dissemination of the ambulatory tocodynamometer may precede answers to questions about appropriate populations and about the use of tocolytic agents.

Tocodynamometry is still considered investigational

by professional groups (e.g., the American College of

Obstetricians and Gynecologists), and there are a large

number of skeptics in the medical community. There

is a pressing need for well-designed randomized trials

of tocodynamometry in conjunction with the best

tocolytic treatments available, across the sociodemographic spectrum of pregnant women at risk of preterm labor. Without additional careful studies soon,

it may be impossible to place this device in its appropriate and rational niche.

Appendix F References

Barden, T. P., Peter, J. B., and Merkatz, I. R.,

“Ritodrine Hydrochloride: A Betamimetic Agent for

Use in Preterm Labor,” Obstet. /Gynecol. 56(1):1-

6, 1980.

Herron, M. A., Katz, M., and Creasy, R. K.,

“Evaluation of a Preterm Birth Prevention Program:

Preliminary Report, ” Obstet. /Gynecol. 59:452-456,

1982.

Iams, J. D., Johnson, F, F., O’Shaughnessy, R. W., et

al., “A Prospective Random Trial of Home Uterine

Activity Monitoring in Pregnancies at Increased Risk

of Preterm Labor, ” Am. J. Obstet. Gyneco].

157:638-643, 1987.

Katz, M., and Gill, P. J., “Initial Evaluation of an Ambulatory System for Home Monitoring and

Transmission of Uterine Activity Data, ”

Obstet. /GynecoZ. 66(2):273-277, 1985.

Katz, M., Gill, P. J., and Newman, R. B., “Detection

of Preterm Labor by Ambulatory Monitoring of

Uterine Activity: A Preliminary Report, ”

Obstet. /Gynecol. 68(6):773-778, 1986.

King, J. F., Keirse, M. J., Grant, A,, et al.,

“Tocolysis-the Case for and Against, ” Z+eterrn

Labour and Its Consequences, R.W. Beard and F.

Sharp (eds.) (London, England: Royal College of

Obstetricians and Gynecologists, 1985).

Lazar, P., Gueguen, S., Dreyfus, J., et al.,

“Multicentered Controlled Trial of Cervical Cerclage

in Women at Moderate Risk of Preterm Delivery, ”

Br. J. Obstet. Gynaecoi. 91:731-735, 1984.

Main, D. M., Katz, M., Chiu, G., et al., “Intermittent

Weekly Contraction Monitoring To Predict Preterm

Labor in Low Risk Women: A Blinded Study,”

abstract, paper presented at the annual meeting of

the Society for Perinatal Obstetricians, Lake Buena

Vista, FL, Feb. 5-7, 1987.

Morrison, J. C., “Prevention of Preterm Birth by Ambulatory Assessment of Uterine Activity: A

Randomized Study,” Am. J, Obstet. Gynecol. 156:

536-543, 1987.

Nageotte, M. P., Dorchester, W., Porto, M., et al,,

“Quantitation of Uterine Activity Preceding

Preterm, Term and Postterm Labor, ” abstract, paper presented at the annual meeting of the Society

for Perinatal Obstetricians, Lake Buena Vista, FL,

Feb. 5-7, 1987.

Newman, R. B., Gill, P. J., Campion, S., et al.,

“Antepartum Ambulatory Tocodynamometry: The

Significance of Low-Amplitude, High-Frequency

Contractions,” Obstet. /GynecoZ. 70:701-705, 1987.

Newman, R. B., Gill, P. J., Wittreich, P., et al.,

“Maternal Perception of Prelabor Uterine Activity, ”

Obstet. /Gynecol. 68:765-769, 1986.

Papiernik, E., Bouyer, J., Dreyfus, J., et al., “Prevention of Preterm Births: A Perinatal Study in

Haguenau, France, ” Pediatrics 76:154-158, 1985.

Porto, M., Nageotte, M. P., Hill, O., et al., “The Role

of Home Uterine Activity Monitoring in the Prevention of Preterm Birth, ” abstract, paper presented at

the annual meeting of the Society for Perinatal

Obstetricians, Lake Buena Vista, FL, Feb. 5-7, 1987.

Rush, R. W., Isaacs, S., McPherson, K., et al., “A

Randomized Controlled Trial of Cervical Cerclage

in Women at High Risk of Spontaneous Preterm Delivery, ” Br. J. Obstet. Gynaecol. 91:724-730, 1984.

Saunders, M. C., Dick, J. S., Brown, I. M., et al., “The

Effects of Hospital Admission for Bed Rest on the

Duration of Twin Pregnancy: A Randomised Trial,”

Lancet 2:793-795, 1985.

Tokos Medical Corp., “Home Uterine Activity Monitoring and Perinatal Nursing Services, ” typescript,

1987.

Tomasi, A. M., Eden, R. D., Canlas, V. M., et al,, “Can

Preterm Labor Be Predicted by Ambulatory

Tocodynamometry?” abstract, paper presented at

the annual meeting of the Society for Perinatal
Appendix F—Ambulatory Tocodynamometry ● 211

Obstetricians, Lake Buena Vista, FL, Feb. 5-7, 1987. fice, December 1987).

U.S. Congress, Office of Technology Assessment, U.S. Department of Health and Human Services,

Neonatal Intensive Care for Low Birthweight Public Health Service, National Center for Health

Infants: Costs and Effectiveness, OTA-HCS-38 Statistics, Monthly Vital Statistics Report 36(4)

(Washington, DC: U.S. Government Printing Of- (Suppl. ), July 17, 1987.
Appendix G

Background Information on Prenatal Care

Introduction

This appendix is intended to supplement the information on prenatal care in chapter 4. It has two main

parts:

● detailed descriptions of studies of the effectiveness

and cost-effectiveness of prenatal care, and

● background data and information on methods

underlying OTA’s analysis of the cost-effectiveness of prenatal care.

Studies of the Effectiveness and

Cost= Effectiveness of Prenatal Care

Studies of the effects of prenatal care on birth outcomes fall into two general categories: 1) studies based

on vital records (i. e., birth and death records); and

2) studies evaluating programs offering enriched or

augmented prenatal care services.

The methods and findings of 26 studies that analyzed the effects of prenatal care using vital records

collected by hospitals, cities, counties, States, and the

Federal Government are summarized in table G-1. All

of the studies shown in that table used multivariate

or other techniques to control for demographic or

medical risk factors that might influence birth outcomes independently of prenatal care.

In recent years, several investigators seeking to examine the effects of prenatal care on birth outcomes

have applied econometric techniques—in particular,

the instrumental variables method—to vital records

data. Table G-2 summarizes five recent econometric

analyses of the effects of prenatal care on neonatal

mortality and birthweight. All five of the studies involved the application of the instrumental variables

technique, a technique that is used to correct for adverse selection bias.1 Studies using econometric techniques such as the instrumental variables method uniformly find even stronger negative effects of prenatal

care on neonatal mortality and low birthweight than

are found with traditional multivariate techniques.

‘Adverse selectlon bias is a threat to the valldlty of some studies of the

effect iveness of prenatal care For more information on this and a related

threat (favorable select]on bias), see the section ]n ch, 4 entitled “Problems

In Interpreting the Evidence “ The Instrumental variables technique attempts

to correct tor adverse selection bias by replacing the observed value 01 prenatal

care with a predicted value derived from a regression of prenatal care on explanatory var]ables that are uncorrelated with the mother’s health status; the

predicted prenatal care level thus derived IS also assumed to be uncorrelated

with the mother’s health status The predicted level of prenatal care IS then

used In a second-stage regression analys]s to pred]ct Its etfect on the outcome

of pregnancy.

212

Such studies generally do not adequately control for

favorable selection bias, however, and therefore can

be expected to overestimate the effects of prenatal care

on birth outcomes.

Table G-3 summarizes 25 evaluations of the effects

on birth outcomes of programs offering augmented

prenatal care. Such programs typically serve teenagers

or poor women. Evaluations of programs with augmented services often use well-selected comparison

groups. However, such evaluations typically compare

care that is generally available to women in the community with more comprehensive programs, and it is

difficult to generalize from these studies about the

value of more v. less prenatal care of the kind that is

generally available.

Table G-4 summarizes 12 studies of the cost-effectiveness of prenatal care. The studies differ with respect to the target population studied, the alternatives

compared, and the categories of costs included. Most

important in distinguishing these studies from one

another, however, is the perspective of the analysis

(indicated in the second column of the table). Most

of the 12 cost-effectiveness studies examine the net

costs of a strategy to a particular institution (e. g., a

health maintenance organization) or program (e.g.,

Medicaid). Differences between alternatives in costs

to other segments of society (e.g., patients, providers,

and insurance companies) are generally not calculated.

Data and Methods Underlying OTA’s

Cost= Effectiveness Analysis of

Expanded Medicaid Eligibility for

Prenatal Care

In chapter 4, OTA analyzed the cost-effectiveness

of expanding eligibility for Medicaid to all pregnant

women in poverty. OTA’s analysis relied on estimates

of the cost of prenatal care and health care for low

birthweight babies and the expected change in the use

of early prenatal care resulting from the expansion of

eligibility. This section elaborates on those two topics,

first, with a description of the data sources, methods,

and assumptions underlying the estimate of the longterm health care costs associated with a low birthweight birth; and second, with a summary of data on

the impact of insurance coverage on the use of prenatal care by poor women.
Table G-1. —Studies Using Vital Records To Examine the Effects of Prenatal Care on Birth Outcomes

Author Study year(s)

Kessner, et al., 1973’ . . . . . .

Gortmaker, 1979’ . . . . . .

Greenberg, 19833 

. . . . . . . . . .

Showstack, et al., 1985’ . . . . .

Strobino, et al., 198 5

5

Institute of Medicine. 19856 .

Fisher, et al., 19857 . . . . . . . . .

Quick, et al., 19818 

. . . . . . . . . .

Eisner, et al., 19799 

. . . . . . .

Terris and Glassser, 197 4

1 0

.

Shwartz and Vinyard, 19651. .

Elster, 1984”. . .,

Dott and Fort, 197 5

1 3

1968

1968

1977

1978

1975-80

1981

1980-83

1973-75

1974

1961

1960

1974-79

1972

Research design

Retrospective analysis of live births in

New York City controlling for race,

ethnicity, social and medical risk

Reanalysis of Kessner, et al. (1973)

data controlling for demographics (4

measures), medical conditions,

hospital service (private v. general)

Retrospective analysis of live births in

the U.S. controlling for race and

education

Retrospective analysis of I we births in

2 California counties controlling for

demographics, hospital type, gestation

Retrospective analysis of change in

neonatal mortality from 1976 to 1980

in Mississippi; race-specific

decomposition of change in NMR into

proportion attributed to new use of

prenatal care v. proportion

independent of changes in use

Retrospective analysis of live births in

the U.S. controlling for race,

educational level, marital status,

age/parity risk

Retrospective analysis of births in lowand high-income census tracts in

Washington State, 1980-83

Retrospective analysis of live births in

Portland, Oregon, controlling for

sociodemographic and medicalobstetric risk and membership in HMO

Retrospective analysis of live births in

the U.S. controlling for demographics

and pregnancy history

Life table analysis of demographically

matched LBW and mature weight

infants born to black mothers in New

York City

Modified life table analysis of live

births in Washington, DC, controlling

for demographics and pregnancy

complications

Retrospective analysis of live births in

Utah controlling for demographics,

pregnancy history, and maternal age

Retrospective analysis of live births in

Louisiana controlling for birthwelght

and poverty status

Prenatal care measure

Adequacy of care index27 28

Modified adequacy of care

Index

Some v no care

Modified adequacy of care

index

Number of visits

Trimester in which care

began

1. First trimester v. other

2. First-trimester care with

recommended number of

visits by gestational age

Percent receiving late or no

prenatal care

Modified adequacy of care

index

Some v. no care

Month care began

Onset of care in specific

gestational age intervals

Trimester care began

Number of visits

Observed effects

Neonatal mortality Birthweight

Whites Black s Total Whites Black s Total

+ + + + + +

†

†

+29

o 0

0

†

† †

Mixed 3 0

Mixed”

† 32
Table G-1 .—Studies Using Vital Records To Examine the Effects of Prenatal Care on Birth Outcomes—Continued

Observed effects

Author Study year(s)

Schramm and Land, 1984” . .

Ryan, Sweeny, and Solola,

1980 15 . . . . . . . . . . . . .

Terris and Gold, 1969 ”

Shwartz and Poppen,

1982’ 7 

. . . . . . . . . . . . . . . . . . .

Grossman and Jacobowitz,

198 1

18 

Corman and Grossman,

1985” . . . . . . . . . . . . . .

Hadley, 198219 ... . . . . . . .

1981-82

July -Dec.

1979

Not

specified

1981

1964-77

1964-77

1969-73

Research design

Retrospective analysis of Missouri

Medicaid births controlling for race,

separate analysis for each year

Retrospective analysis of live births in

Memphis, Tennessee, hospital serving

mainly low-income blacks; groups

similiar on most demographics and

medical risk

Retrospective analysis of

demographically matched pairs of

LBW and mature weight black infants

born in one Brooklyn, New York,

hospital

Retrospective analysis of births in

Baltimore, Maryland, controlling for

demographics, medical-obstetric

factors

Retrospective county-level analysli of

live births in the U. S., controlling for

demographics, family planning and

abortion use, prior mortality rates

Retrospective county-level analysis of

live births in the U.S. controlling for

demographics; availability of family

planning, MIC Projects, CHCS and

NICUs; WIC use

Retrospective county group-level

analysis of live births in the U.S.

controlling for prior NMR, births to

high-risk women, hospital births,

Medicare expenditures, percent older

and non-board-certified OBS, abortions

and NICU

Neonatal mortality Birthweight

Prenatal care measure Whites Black s Total Whites Black s Total

Modified adequacy of care

index

Low (O-3) v. high (4+) number

of visits

Week of pregnancy at first

Visit

Ratio of observed to

expected/recommended

number of visits by

gestational age

Modified adequacy of care

Index

Active non-Federal MDs/1 ,000

population

Medicaid coverage of firsttime pregnancies

Medicaid coverage of firsttime pregnancies

Number of OBs/1 ,000 live

births

Medicaid coverage of unborn

chiIdren

+

o

0

0

+

4-

0 0 + + +

+ +

0

0

+

Mixed 3 3

0

0

0

0
Table G-1 .—Studies Using Vital Records To Examine the Effects of Prenatal Care on Birth Outcomes—Continued

Author Study year(s) Research design

Goldman and Grossman,

1982 2

’ . . . . . . . . . . . . . . . . . . .

Corman, Joyce, and

Grossman, 198722 

. . . . .

Joyce, 198 7

23 

........ ,

Rosenzweig and Schultz,

198224 . . . . .

Harris, 198225 ., . . . . . . . .

1969-78 Retrospective county-level analysis of

live births in the U.S. controlling for

percent nonwhite births, family

income, availability of physicians

1975-80 Retrospective county-level analysis of

live births in the U.S. controlling for

birthweight, abortion rate, NICU

availability, teen family planning use,

WIC use, BCHS project use, smoking

behavior, high-risk women, percent

poor

1976-78 Retrospective county-level analysis of

live births in the U.S. controlling for

birthweight, prematurity, teen family

planning use, abortion use, NICU

availability, smoking behavior, teen

births, births to older women, high-risk

women, population density

1980 Retrospective analysis of live births in

the U.S. controlling for demographics,

parity, smoking behavior, use of

prenatal screening tests, and

electronic fetal monitoring

1975-76 Retrospective analysis of fetal deaths

and Iive births to black mothers I n

Massachusetts, maximum likelihood

estimate of effect of prenatal care

controlling for demographic and

medical risk factors and gestational

age

Prenatal care measure

Presence and number of

CHCs

Percent of Iive births with

first-trimester care

Percent of Iive births with

first-trimester care

1. Delay (in months) to first

visit

2a Delay (in months) to first

visit

2b. Total number of visits

Trimester in which care

began

Observed effects

Neonatal mortality Birthweight

Whites Black s Total Whites Black s Total

Mixed Mlxe d

34 Mixe d

†

†

†

o

—35

† o

0

—

+

o
Table G-1 .—Studies Using Vital Records To Examine the Effects of Prenatal Care on Birth Outcomes—Continued

Observed effects

Neonatal mortality Birthweight

Author Study year(s) Research design Prenatal care measure Whites Black s Total Whites Black s Total

Lewit, 198326 

. . . . . . . . . . . . . . 1970 Retrospective analysis of live births in Delay in initiation of care +3,

New York City controlling for

demographics and medical risk factors Number of visits +36

and gestational age

Abbreviations BCHS = Bureau of Community Health Services; CHC = community health center, LBW = low birthweight; MD = medical doctor; MIC = maternity and infant care; NICU = neonatal Intensive

care unit, N M R = neonatal mortality rate, OB = obstetrician; WIC = Women, Infants, and Children

Key: + = positive effect (e g., prenatal care Improves the condition)

— = negative effect (e g , prenatal care worsens the condition).

O = no effect (e g prenatal care has no impact on the condition)

Mixed = results were positive, negative, and/or nil.

Blank spaces mean the relationship was not analyzed.

‘D Kessner, J. Singer, C Kalk, et al., “Infant Death An Analysls by Maternal Risk and Health Care, ” Contrasts in Health Status” Vo/ / (Washington, DC: Instttute of Medtclne, National Academy of Sciences, 1973).

‘S L , Gortmaker, “Poverty and Infant Mortality In the United States,” Am. Sociological Review 44 ”280-297, 1979

3R.S. Greenberg, “The Impact of Prenatal Care In Different Social Groups, ” Am. J. Obstet. Gyneco/. 145 ”797, 1983.

“J A. Showstack, M H Stone, and S.A. Schroeder, “The Role of Changing Clinical Practices In the Rls!ng Costs of Hospital Care,” N Errg J Med 313(19):1201-1207, 1985.

5D. M. Strobino, Y.J Kim, B E Crawley, et al., “Decllnes In Nonwhite and White Neonatal Mortallty (n Mississippi, 1975 -80,” Pub//c Health Reporls 100(4 )”417-427, 1985

‘Institute of Medlclne, Preverrt/ng Low Etirthwe/ght (Washington, DC: National Academy Press, 1985).

‘E S F!sher, J P. LoGerfo. and J.R Dallng, “Prenatal Care and Pregnancy Outcome During the Recession: The Washington State Experience,” Am J. f’ub//c k/ea/th 75(8):6664369, 1985

‘J D Quick, M R Green lick, and K.J. Roghmann, “Prenatal Care and Pregnancy Outcome in an HMO and General Population’ A Multivariate Cohort Analysis, ” Am. J. Pub//c /+ea/fh 71(4):381-390, 1981

W Elsner, J V Bra.ae, M W Pratt, et al., “The Risk of Low Birthweight, ” Am. J. Pub//c Health 69(9)887-893, 1979

‘OM. Terris and M. Glasser, “A Life Table Analyls of the Relation of Prenatal Care to Prematurity,” Am J Pub//c F/ea/th 64(9):869-675, 1974.

‘IS Shwarfz and J.H. Vinyard, “Prenatal Care and Prematurity, ” Pub/ic Hea/th Reports 80(3):237-248, 1965.

‘ZA. B. Elster, “The Effect of Maternal Age, Parity, and Prenatal Care on Pennatal Outcome in Adolescent Mother, ” Am J Obstet. Gyneco/ 14!3(8):845-647, 1984

“A. B Dott and A T Fort, “The Effect of Availability and Utilization of Prenatal Care and Hospital Services on Infant Mortality Rates,” Am. J. Obstet. Gyneco/ 123(8):854-860, 1975.

“W. Schramm and G Land, “Prenatal Care and Its Relationship to Medicaid Costs,” prepared under HCFA Grant No. 11-P-98305, State Center for Health Statistics, Division of Health, Missouri Department

of Social Services, December 1984.

“G Ryan, P Sweeney, and A Solola, “Prenatal Care and Pregnancy Outcome,” Am. J Obstet. Gyneco/. 137(8):876-881, 1980

‘EM Terris and E. Gold, “An Epidemiologic Study of Prematurity: Part 11, Relation to Prenatal Care, Birth Interval, Residential History, and Outcome of Prewous Pregnancies,” Am J. Obstef. Gyrreco/. 103(3) :371-

379, 1969

“R. Schwartz and P Poppen, Measuring the Impact of CHC’S on Pregnancy Outcomes (Cambridge, MA: Abt Associates, Inc., Oct. 15, 1982).

IOM Grossman and S Jacobowitz, “Variations In Infant Mortality Rates Among Counties of the United States: The Roles of Public Policles and Programs,” Demograpfry 18(4):695-713, 1981

“H. Corman and M. Grossman, “Determinants of Neonatal Rates In the U S ,“ J. Health Economics 4.213-236, 1985.

IOJ f-fadley,MoreMe~jc&./ care, Better Health? (Washington. DC: Urban I nstltute press, 1982)

2’F. Goldman and M Grossman, “The Impact of Public Health Policy: The Case of Community Health Centers, ” Working Paper No. 1020 (Cambridge, MA National Bureau of Economic Research, November 1982).

ZZH Corman, T.J. Joyce, and M. Grossman, “Birth Outcome Production Functions in the U.S.,” J. Human Resources 22(3):339-360, 1987

‘3T Joyce, “The Impact of Induced Abortion on White and Black Birth Outcomes in the United States,” Demography 24(2):229-244, 1987

Z,M R, Rosenzwelg and T,p, Schultz, ‘, The Behav, or of Mothers as Inputs to child Health: The Determinants of Birth Weight, Gestation, and Rate Of Fetal Growth, ” Ecortom/c Aspects of Health, V R Fuchs

(ed ) (Chicago, IL” Unwersity of Chicago Press, 1982).

‘5J. E. Harris, “Prenatal Medical Care and Infant Mortality,” Economic Aspects of Hea/tfr, V.R. Fuchs (cd.) (Chicago, IL: University of Chicago Press, 1982).

“E. Lewit, “The Demand for Prenatal Care and the Production of Healthy Infants, ” Research in Human Capita/ and Development 3:127-181, 1983.

“3-category Index measuring tlm!ng of first visit, number of vlslts by gestational age, and type of hospital serwce.

~ewhlte = native born whites only

“Blacks = nonwhites

‘“When gestational age differences were controlled, negligible differences were found in the initiation of care for mothers of all premature births and their mature comparisons However, mothers of Infants

premature by weight and gestation tended to initiate care earlier than the!r comparisons, while mothers of infants premature by weight alone tended to begin care later than their comparisons. 31 No association was found between lack of care and low blflhwel~ht for women with complications of pregnancy. Similarly, there was no association for women without complications prior to gestatlonal

week 36. A significant association was found among women with uncompl Icated pregnancies who delivered after 35 weeks gestation, controll I ng for demographics.

“Effect adjusted for gestatlonal age

3]Of four regression models tested using different control variables, two were posltlve and slgnlflcant; two were not.

“The slgnlf!cance of flndlngs varied w!th the CHC variable and the regression model tested Authors concluded that CHCS contributed to reductions in NMR

l~Effect adjusted for gestational age. Prenatal care associated with improvement I n Prematurity rate

j* Effect on bl rthweight Independent of effect through 9e5tatlonal a9e

SOURCE Office of Technology Assessment, 1988

I
Author

Corman Joyce and

Grossman 1987b

Joyce 1987 C

Rosenzweig and

Schultz 1982d

Rosenzweig and

Schultz 1986e

Schultz, 1986’

Abbreviations CHC =

Study year(s)

1975-80

1976-78

Married subsample of

1980 National Natality

Survey

Table G-2.—Econometric

Married subsample of

1980 National Natality

Survey

Married subsample of

1980 National Natality

Survey

the

the

the

community health center, MIC

Unit of

analysis

Counties

Counties

Individual

Individual

Individual

— . .

Studies of the Effectiveness of Prenatal Carea

Observed effects

Neonatal mortality Birthweiqht

Prenatal care measure Whites Blacks Total Whites Blacks Total

1 Race-specific 3-yr – 016 t o 026 to

average percent live – .076g

1 17q

births for which care

began in first trimester

centered on 1977

2 MIC project patients and NS NS

female CHC users/ 1,000

poor women

Percent of births receiving –.047g

NS

prenatal care in first

trimester

1 Delay (in months) to first 1

visit

2a Delay (in months) to 2a

first visit

2b. Total number of visists 2b.

061 h.045h

One month additional

delay reduces

birthweight by 40 grams

NS

Average increase in

birthweight of 246 to

263 grams per visit

Delay in months to first One month additional delay

visit reduces birthweight by 91

grams

1 Delay (in months) to 1 NS

first visit

2 Total number of visits 2. 287 to 33 grams

increase per visit

maternity and infant care, NMR = neonatal mortality rate. NS = not significant.

aThe stljdles summarized in this table analyzed vital records data us I ng the Instrumental variables technique

bH Corman, T J Joyce, and M Grossman. “Birth Outcome ProductIon Functions in the the U S ,“ J Human Resources 22(3) 339-360, 1987

C T Joyce, “The Impact of Induced Abortion of White and Black Birth Outcomes In the United States, ” Demography 24(2) 229.244, 1987

dM R Rosenzwelg and T p Schultz. “The Behavior of Mothers as Inputs to Child Health The Determinants of Birth Weight Gestation, and Rate of Fetal Growth EconornIc Aspects of Hea/th, V R Fuchs

(cd.) (Chicago IL: Unwerslty of Chicago Press, 1982)

eM, R, Rosenzwelg and T p Schultz, The Stabillty of Household ProductIon Technology: A Repllcatlon, ” Center D!scusslon Paper No 511, Economic Growth Center, Yale University, New Haven, CT, September 1986

fT p Schultz Unpublished data from the 1980 National Natallty Suwey, prepared for the Off Ice of Technology Assessment, U S Congress, Washington, DC JUIY 1986

~predlcted percentage point change In NMR resultlng from each percentage point Increase In percent of mothers recelvlng early prenatal care

Predicted percentage point change In low blrthwelght rate resultlng from each percentage point Increase In percent of mothers recelvlng early prenatal care

SOURCE Office of Technology Assessment, 1988

I

●
Table G-3.—Studies of the Effects of Programs Offering Augmented Prenatal Care1 on Birth Outcomes

Observed effects

Neonatal mortality Birthweight

Author Study year(s) Research design Prenatal care measure Blacks Whites Total Blacks Whites Total

Peoples and Siegel,

19832

Sokol, et al 19803

Johnson and Hefferin.

1977’

Peoples, et al , 19845

Strobino, et al , 19866

State of California, 1984,

and Korenbrot.

19847

Papiernik, et al 1985’

Herron, et al 1982’

Burt, et al 198410

Moore, et al 1986”

Smith et al 197812

1970-77, MIC project m

North Carolina

Retrospective analysis controlling

for demographics, reproductive

risk, adequacy of care28

MIC v comparison group —

(all residents of three (Teens) 27

similiar nonprogram

countries)

1976-77, MIC project m †

Cleveland Metropolitan

General Hospital, Ohio

Comparison of program

participants and similiar patients

ineligible due to county of

residence

MIC v comparison group

o

0 0

MIC v traditional health

department clinic users

1969-71, MIC project m

Los Angeles County,

California

1979-81, IPO project m

North Carolina

1975-81, ICHP in

Mississippi

Retrospective univariate analysis of

demographically similar groups

o

0

27

Retrospective analysis controlling

for demographics and reproductive

risk

Pre-post retrospective analysis

controlling for demographics and

reproductive risk

IPO counties/registrants

v non-l PO

counties/registrants

ICHP counties v nonICHP counties

OB Access births v †

matched Medic-Cal births

1978-82, OB Access

project m California

1971-82 Haguenau,

France

Retrospective analysis of

demographically matched groups

Time-series analysis of rates of

change in program area.

controlling for maternal age, blood

pressure, and social class

Comparison of incidence of

preterm delivery in program

hospital v nonprogram hospital

Births in study area

where special program

was Implemented †

Preterm labor prevention +33

program for high risk

UCSF v affiliated

institution without special

program

Participation in OAPP

projects v other similar

programs or national data

‘No care v program

participants

1978-79 University of

California, San Francisco

Medical Center

1982, 38 projects

sponsored by OAPP

1981-84, University of

California, San Diego

Medical Center

1970-74 Jefferson Davis

Hospital, Houston, Texas

Retrospective analysis and informal

comparisons controlling for

demographics

†

Comparison of groups with similiar

demographics and medical risks †

Program participants randomly †

selected from hospital’s obstetrical

clinic comparison group matched

on race, age, parity month of

delivery

Teenage program

participants v nonparticipants
Table G-3.—Studies of the Effects of Programs Offering Augmented Prenatal Care1 on Birth Outcomes—Continued

Observed effects

Neonatal mortality Birthweight

Author Study year(s) Research design Prenatal care measure Blacks Whites Total Blacks Whites Total —

Olds et al 19861 3 1975-80 semi-rural Randomized clinical trial Nurse-visited v

county in Appalachian comparison +

region of New York (Teens)

o

i Smokers)

Mixed29

I Older

nonsmokers )

Ershoft et al

1982 1983”

Leppert, Namerow. and

Barker 198615

University Associates,

1985”

Fence et al 198117

McAnarney et al

197818

1980-81 southern

California HMO

1981-82 large urban

teaching hospital New

York City

1984-85 11 local health

departments in Michigan

1974-78, University of

Maryland Hospital,

Baltimore Maryland

1972.73 3 settings in

Rochester New York

Pre-post design with two

comparison groups, separate

covariate analyses for

demographics

Retrospective analysts controlling

for demographics complications of

pregnancy

Retrospective analysis of

demographically similar groups

Retrospective analysis of

matched pairs in terms of age

race parity and socioeconomic

status

Retrospective analysis of groups

matched for race and public

assistance status

Routine care v care and

education services

Number of visits

Number of visits

Trimester at which care

began

Outcome of prior

pregnancy compared to

outcome of pregnancy

whale enrolled in program

for same women

Program participants v

non-participants

Young teen users of

comprehensive clinic v

regular clinic users

Comprehensive maternity

project for teens v a

CHC v a hospital

o

(Total)

Mixed30

(smokers)

†

†

o

0 + +

†

†

obstetrics clinic
Table G-3.—Studies of the Effects of Programs Offering Augmented Prenatal Care1 on Birth Outcomes—Continued

Study year(s)

Observed effects

- - . —

Neonatal mortality Birthweight

Prenatal care measure Blacks Whites – Author Research design Total Blacks Whites Total

Grossman and

Jacobowtiz 198119 1964-77 MIC projects

throughout the U S

Retrospective county-level analysis

controlling for demographics,

family planning and abortion use

prior mortality rates

Presence of MIC projects

and number of births to

participants as percent of

births to poor women

o 0

Mixed31 Mixed31

Corman and Grossman

198520 1964-77 MIC projects

throughout the U S

Retrospective county-level analysis

controlling for demographics,

availability of family planning

abortion and NICUs: WIC use

Medicaid eligibility

Number of MIC projects

and CHCs per 1,000 poor

women

Corman, Joyce, and

Grossman 19872

’ 1975-80, U S Retrospective county-level analysis

controling for birthweight,

abortion and NICU availability

teen family planning use, WIC

use, smoking behavior, high-risk

women, percent poor

Retrospective analysis controlling

for race, SES, maternal age

MIC project patients and

CHC female users per

1 000 poor women

Mixed 32 Mixed32

Shapiro, et al , 195822

Shapiro et al 19602 3

Rivara et al 19852 4

1955 New York City

1955-57, New York City

1970-78 Kentucky

Prepaid group practice

(HIP) v private practice

patients

Augmented prepaid group

practice (HIP) v private

practice patients

Regionalized perinatal

care program counties v

comparison counties

0

27

+27

+

+

o

Retrospective analysis controlling +

for race, SES, maternal age

Pre-post with comparison group,

two groups similar on

socioeconomic risk factors,

standarized NMRs by birthweight

birth multiplicity and infant

gender

Retrospective analysis, all

participants were low Income, high

risk

Heins et al 19832 5 1976-78, South Carolina

1970-79 eight regions

Regionalized perinatal

care program participants

v nonparticipants

o

0

McCormick et al

198526 Pre-post with comparison group

having similiar demographics

Eight regionalized

perinatal care program

regions v eight

comparison regions
Abbrewatlons HIP = Health Insurance Plan of New York City, an HMO, HMO = health maintenance orgamzatlon ICHP – Improved Ch!ld Health Project, IPO – Improved pregnancy outcomes. LBW = low

blrthwelght, MIC = maternity and Infant care, NICU = neonatal lntenslve care unit NMR – neonatal mortality rate OAPP – Off Ice of Adolescent Pregnancy program. OB = obstetrician

SES = socioeconomic status, UCSF = Unlverslty of California San Franc!sco

KEY ~ = pos!tlve effect (e g comprehensive program Improves the condltlon)

= negative effect (e. g., comprehensive program worsens the cond!tlon)

O = no effect (e.g., comprehensive program has no Impact on the cond!tlon)

Mixed = results were positive, negattve and/or nll

Blank spaces mean the relationship was not analyzed

‘Augmented care Includes programs which prowde supplemental services In addltlon to prenatal medical care These programs provided one or more of the followlng types of spec!al services outreach. transportation.

nurse home vlsltatlon nutrltlon and social serwces, health education, followup of missed appointments. case management/coordination of serwces, and dental care El Iglble partlcl pants were usually adolescents

and/or low Income or medically Indigent women Target areas vaned in size also Comparison groups typically received a more Ilmlted range of services

‘M D Peoples and E Siegel, “Measur!ng the Impact of Program for Mothers and Infants on Prenatal Care and Low Birth Weight The Value Of Ref!ned Analyses. ” Mecf/ca/ Care 21(6) 586-605, 1983

‘R J Sokol R B Woolf, M .G Rosen, et al “Risk. Antepartum Care, and Outcome I m pact of a Maternity and Infant Care Project, Obstet/Gyneco/ 56(2) 150.156 1980

‘D K Johnson and E A Heffenn, “Perinatal Outcomes Among High-Risk Patients In Two Prenatal Care Programs, /rrqufry 14293-302. 1977

‘M D Peoples, R C Grimson, and G L Daughtry, “Evaluation of the Effects of the North Carollna Improved Pregnancy Outcome Prolect Implications for State-Level Declslon Making,” Am J Pub//c Health

74(6) 549-554, 1984

‘D M Strobl no, G A Chase, Y J Kim, et al , “The Impact of the MISSISSIPPI Improved Child Health Project on Prenatal Care and Low Blrthwetght, ” Am J Publlc Health 76(3) 274-278, 1986

“State of Cahfornla, Health and Welfare Agency, Department of Health Care Serwces. “Final Evaluation of the Obstetrical Access Pilot Project. July 1979-June 1982. ” Sacramento, CA 1984, and C C Korenbrot,

Risk Reduction in Pregnancies of Low-Income Women, ” &fobIus 4(3).35-43. 1984

‘E Papternlk, J Bouyer, J Dreyfus, et al , “PreventIon of Preterm Births A Pennatal Study In Haguenau, France. ” Ped/atr/cs 76(2) 154-158, 1985.

‘M A Herron, M Katz, and R K Creasy, “Evaluation of a Preterm Birth PreventIon Program Preliminary Report, ” Obstet /Gyneco/ 59 ”452-456, 1982

‘‘M R Burt M H Klmm!ch, J Goldmuntz , et al F/e/p/rig Pregnant Ado/escerrts. Outcomes and Costs of Serwce De//very (Washington, DC Urban Institute Press, February 1984)

‘‘T R Moore W Ongel, T C Key, et al , “The Pennatal and Economic Impact of Prenatal Care In a Low-Socloeconomlc Population, ” Am J. Obstet Gyneco/ 154(1) 29-33, 1986

“P B Smith, R B Walt, D.M Mumford, et al “The Medical Impacts of an Anteparfum Program for Pregnant Adolescents” A Stattstlcal Analysis, ” Am ,/ Pub/(c F/ea//lr 68(2) 169-172 1978

I’D L Olds and C R Henderson, “lmprowng the Dellvery of Prenatal Care and Outcomes of Pregnancy A Randomized Trial of Nurse Home Vlsltatlon. ” Ped/atr/cs 77(1) 16-28. 1986.

“D H Ershoff, N K Aaronson, B G Danaher, et al Cost.Benefit Ana/ys/s of a Comprehensive Prenatal Health Educat/on Program kV/th/n an HMO Sett/ng, Execuflve Summary, prepared for the Off Ice of Health

Information Health Promot!on and Physical Fitness and Sports Medlclne, Publlc Health Service, U S Department of Health and Human Services, Washington, DC, July 1982, and D H Ershoff, N K Aaronson,

B G Danaher, et al., “Behavioral, Health, and Cost Outcomes of an HMO Based Prenatal Health Education Program. ” Pub//c Health Reports 98(6) 536.547, 1983

“P C Leppert P B Namerow, and D Barker, “Pregnancy Outcomes Among Adolescent and Older Women Recelvlng Comprehensive Prenatal Care. ” J Ado/ Health Care 7(2) 112-117. 1986.

“Unlverstty Associates, Infant Hea/th /n/t/at/ve Program Final Report, prepared for the Bureau of Community Services, Mlchlgan Department of Publlc Health (Lansing, Ml December 1985)

‘ ‘M E Fence J L Granados, I G Ances et al “The Young Pregnant Teenager Impact of Comprehensive Prenatal Care, ” J Ado/ Health Care 1(3) 193.197, 1981

“E R McAnarney K J Roghmann, B N Adams. et al “Obstetric Neonatal and Psychosocial Outcomes of Pregnant Adolescents. ” Ped/atr/cs 61(2) 199-205 1978

“M Grossman and S Jacobowltz, “Varlatlons in Infant Mortallty Rates Among Counties of the United States The Roles of Publlc Poltcles and Programs, ” Demography 18(4) 695-713, 1981

“H Corman and M Grossman, “Determinants of Neonatal Mortal!ty Rates In the U S ,“ J Health Economics 4213-236, 1985

“H Corman T J Joyce, and M Grossman. “Birth Outcome ProductIon Functions In the U S “ J Human Resources 22(3) 339360, 1987

2’S Shapiro, L Weiner, and P M Densen, “Comparison of Prematurity and Pennatal Mortallty In a General Population and In the Population of a Prepaid Group Practice Medical Care Plan, ” Am J Publfc

/+ea/th 48(2) 170.187, 1958

2’S Shapiro, H. Jocobzlner, P M Densen, et al., “Further Observations on Prematurity and Perlnatal Mortallty In a General Population and In the Population of a Prepaid Group Practice Medical Care Plan, ”

Am J Pub//c Hea/th 50(9) 1304.1317, 1960

“F P Rlvara, G A Culley D Hickok, et al ‘A Health Program s Effect on Neonatal Mortality In Eastern Kentucky, ” Am J Prev Med 1(3) 35-40, 1985

“H C HeIns, J M Miller, A Sear, et al “Benefits of a Statewide High-Risk Perlnatal Program “ Obstet /Gyneco/ 62(3) 294296. 1983

z,M c McCormick, S Shapl ro and B H Starfleld “The Reglonallzatlon of Pennatal Service Summary of the Evaluation of a National Demonstration Program, ” J A.M A 253(6) 799-804, 1985

“Black = nonwh!te

‘“Adequacy of care Index = 3-category Index measuring tlmlng of first vlslt, number of vlslts by gestatlonal age and type of hospital serwce, Index onglnally developed for use In the Kessner, et al (1973) study

“NO effect on average blrthwe!ght but percent LBW lower !n experimental group

30 Higher mean blrthwelght In augmented care group h!gher mean blrfhwelght than In comparison group but no stgniflcant difference between groups In percent LBW

“When prior (basellne) death rates were controlled there was no slgmflcant association between the prenatal care measure and the dependent vanable Slgnlflcantf!ndlngs were obtained when basellne death

rates were not cent rolled for wh Ites, the relatlonsh I p was pos!tlve while for blacks, the relatlonshl p was negat Ive

~~Resu Its were SI gn Iflcant on Iy when b! rthwe! ght was controlled

‘

] Effect was for preterm dellvery which IS correlated with blrthwe!ght

SOURCE Off Ice of Technology Assessment 1988

I

I

o

3

I ●
Table G-4.—Studies of the Cost-Effectiveness of Prenatal Care

Maternal costs Newborn costs

Year(s) and target Alternates Perspective Prenatal Maternity Initial NICU All initial

Author population compared of analysis care only care hospital hospital Other expenses

Korenbrot 1984’,

State of California,

19842

, Phibbs and

Korenbrot, 19863

Malitz 19834

Schramm and

Land, 19845

Schramm and

Land, 19845

Institute of

Medicine, 1985’

1978-82, Medi-Cal

eligible pregnant

women m California

1981 pregnant

women in Texas

who would become

Medicaid - eligible at

delivery

OB Access Project

augmented v

routine care for

Medi-Cal women

Change in

utilization after

expansion of

Medicaid coverage

from pregnancy

verification

a Eligible for

prenatal care

only

b Eligible for all

Medicaid

1981-82, Missouri Adequate” v

Medicaid births inadequate care

1981-82, pregnant Unborn Child

women in Missouri Program18

who would become expansion of

Medicaid eligible at Medicaid coverage

delivery from pregnancy

verification

1980, national First trimester v

cohort of women other

aged 15-39 with

less than 12 yrs of

education receiving

public assistance

Medicaid x

x16 x Rehospitalized

during first year

Medicaid

Medicaid

U S health care x

system

x

x

x

x

x

x

x

x

x

Rehospitalized

during first year

long-term singleyear morbidity

costs

Change in expected Ratio of savings

birthweight to cost

33.8% 15 reduction 1 7 to 26

in LBW rate

NA

a 1.0115 (all cases

1 121

5

(adolescents)

b Net

costs =$558/

case and

$332/adolescent

16%15 reduction in 1 34 to 1 12’5 “

LBW rate

7-30%15 reduction Net costs =$157/

in LBW rate19 case

13-22% 15 reduction 2.0315 to 338

in LBW rate2o With a 6.4%

reduction in LBW

rate, savings equal

costs
Appendix G—Background Information on Prenatal Care ● 223

x x x

x

x x x x

x
Table G.4.—Studies of the Cost-Effectiveness of Prenatal Care—Continued

Maternal costs Newborn costs

Year(s) and target Alternates Perspective Prenatal Maternity Initial NICU All initial Change in expected Ratio of savings

Author population compared of analysis care only care hospital hospital Other expenses birthweight to cost

Joyce, et al

198614 1975-80, all first trimester v U S health care x For whites: 27-66 Cost of prenatal

pregnant women in other system fewer LBW births care only per LBW

the U S per 1,000 birth

additional users of averted =$3,200 to

first-trimester care $6,500 for whites

For blacks 20-97 and $1,900 to

fewer LBW births $9,400 for blacks

per 1,000 savings not

additional users of calculated

first-trimester care

Abbreviations: HMO = health maintenance organization; LBW = low birthweight; NA = not available, NS = not significant, OB = obstetrician.

IC.C. Korenbrot, “Risk Reduction In Pregnancies of Low-Income Women, ” Mobius 4(3)35-43, 1984

‘State of Callfornla, Health and Welfare Agency, Department of Health Care Serwces, “Final Evaluation of the Obstetrical Access Pilot Project, July 1979-June 1982, ” Sacramento, CA, 1984

‘C S Phlbbs, and Korenbrot, C.C , “Cost Impact of Comprehensive Prenatal Care on Medl-Cal With the Implementation of AB3021,” testimony to the Ways and Means Committee of the California State Assembly,

Apr. 16, 1986

‘D Mal!tz, “A Cost-Benef!t Analysis of Extending Medicatd Coverage To Prowde Prenatal Care to Pregnant Women, ” Study submitted to the Texas Department of Human Resources, Austin, TX, May 1983

‘W Schramm, and G Land, “Prenatal Care and Its Relatlonshlp to Medicaid Costs, ” prepared under HCFA Grant No 11-P-98305, State Center for Health Statlstlcs, Dlwslon of Health, Missouri Department

of Social Serwces, December 1984.

‘Institute of Medicine, /Jrevent/ng Low B/rthweight (Washington, DC National Academy Press, 1985)

‘S Ricketts, Family Health Services Division, Colorado Department of Health, Denver, CO, Internal memorandum, February 1986

‘L. B. Berger, “Public/Private Cooperation In Rural Maternal Child Health Efforts The Lea County Pennatal Program, ” Texas Med/c/ne 8054.57, September 1984.

‘A.G. Blackwell, L Sallsbury, and A.P. ArrIola, Publlc Advocates, Inc., San Francisco, CA, “Adm!nlstratwe Petltlon To Reduce the Incidence of Low Birth Weight and Resultant Infant Mortal ity, ” administrative

petltlon to the U S. Department of Health and Human Serwces, 1983

‘“P C Leppert, and P B Namerow, “Costs Averted by Providing Comprehensive Prenatal Care to Teenagers, ” J. Nurse-M/dw/fery 30(5):285.289, 1985.

‘‘T R Moore, W Orlgel, T C. Key, et al., “The Pennatal and Economic Impact of Prenatal Care tn a Low-Socloeconomlc Population, ” Arn J Obstef. Gyneco/ 154(1)29-33, 1986

“D.H. Ershoff, N.K Aaronson, B.G. Danaher, et al,, Cost-L?eriefit Ana/ys/s of a Cornprehens/ve Prenata/ /+ea/th Educatlorr Program Wfthln an HMO Setting, Executive Summary, prepared for the Office of Health

Information, Health Promotion and Physical Fitness and Sports Medicine, Publlc Health Serwce, U S Department of Health and Human Serwces, Washington, DC, July 1982

“D H. Ershoff, N K Aaronson, B G. Danaher, et al., “Behavioral, Health, and Cost Outcomes of an HMO-Based Prenatal Health Education Program, ” Pub//c /-/ea/th Reports 98(6):536-547, 1983.

“T Joyce, H Corman, and M Grossman, “A Cost-Effectiveness Analysts of Strategies To Reduce Infant Mortal ity. ” Med/ca/ Care. In press

‘

5 Calculation by OTA

“Physician fees only

“Adequate care = care begun by the 4th month with at least five wsits for preterm deliveries and at least eight visits for full-term births Inadequate care = all other comb! nat!ons of tlmlng and frequency

‘*Prenatal care was provided to previously Inellglble first-time mothers under this program

“Range IS based on analyses on 2 separate years of data

~oThe maJor objective of this study was to estimate sawngs If the Publ IC Health Service goal for the LBW rate (g”io ) was met

z !Adequate = 6 + visits, Inadequate = 5 or fewer vlslts

~~Range IS for current Medicaid el Iglbles and Inellglbles

“Overall figures for LBW not reported.

SOURCE Office of Technology Assessment, 1988

I

I
Appendix G—Background Information on Prenatal Care ● 225

Approach Used To Estimate the Net

Long-Term Health Costs of Low Birthweight2

Low birthweight is associated with, and in some

cases clearly brings about, increased levels of illness

and disability over a person’s lifetime (580,665). It

follows, then, that if the low birthweight rate—i.e.,

the percentage of live births that are low birthweight—

could be reduced, there would be fewer infants born

with chronic illness and physical or developmental disability, with consequent savings in the health care costs

of treating these conditions.

Long-term health care costs associated with low

birthweight births result from early intervention programs, q special education, adult care and services, and

institutional or foster care. Other long-term health care

costs, not considered in OTA’s analysis, may result

from unpaid parental and other voluntary care, and

occasional acute care expenses beyond the first year.

OTA’s analysis made the following assumptions regarding the types of care that low birthweight children

will receive over their lifetimes and the costs of that

care:

●

●

●

●

all infants surviving at age 1 will survive to age

35, regardless of their level of disability;

costs of care are calculated only to age 35;

the severity of disability as evaluated at age 1 is

constant through age 35; and

the costs of special services provided to moderately and severely impaired populations (i. e.,

institutional or foster care, adult care and services,

special education, and early intervention), by

level of disability, are the same as the costs of providing these services to severely and moderately

mentally retarded people.

Available data on the quantity and costs of care are

imperfect and in some cases incomplete. To account

for the uncertainty in the estimates, OTA estimated

the long-term costs of low birthweight in a range, with

high- and low-cost boundaries.

Estimates of Long-Term Outcomes by Birthweight

Group.—To compare the net extra long-term costs of

care for low birthweight babies with those of normal

birthweight babies, OTA needed data on health out-

‘B]rthwelght categories are defined here as follows. normal birthweight M

at least 2,500 grams, and low b]rthweight is under 2,500 grams. Low birthweight has two parts: very low b]rthweight (under 1, soo grams) and moderately low blrthwelght ( trom 1,500 to 2,500 grams).

‘Early intervention programs are broadly defined by the Education of the

Handicapped Act Amendments ot 1986 (Public Law 9Q-4571 as developmental services provided to handicapped Infants or toddlers. These serwces include family training, counseling, and home wstts; special InstructIon; speech

pathology and audlolo~y; occupational therapy, physical therapy; psychm

Ioglcal serv]ces; case management services, medical services only tor diagnostic or evaluation purposes; early ]dentlficat]on, screenln~ and assessment

serv]ces, and health services necessary to enable the Infant or toddler to benetlt trom the other early lntervent]on services

comes across all birthweight categories, including normal birthweight. One study, by Shapiro, et al. (580),

collected data on the outcomes of approximately

200,000 births in regions of six States in 1978-79. That

study included all birthweight categories and also provided information on developmental outcomes at age

1 for the followup population (the roughly 80 percent

of the infants in the study population that survived

to year 1).

Another study that evaluated a followup population of neonatal survivors to determine developmental outcomes, by Marlow, et al, (403), was based on

a sample of 1,000 births in Great Britain from 1976-

80. The Marlow, et al., study included only births of

less than 2,000 grams, so the results are not considered in OTA’s analysis. As shown in table G-5, however, neonatal mortality and morbidity for very low

birthweight infants in the Shapiro and Marlow studies

are quite similar.

Health outcomes at age 1 by birthweight category

as reported by Shapiro, et al., are shown in table G-6

(580). Note that l-year-olds evaluated as having mild

congenital anomalies are grouped in the normal outcomes category in the table. To the extent that children with mild congenital anomalies have differentially

greater care needs than normal birthweight children,

OTA’s analysis underestimates the long-term health

care costs of low birthweight.

Table G-5.— Health Outcomes Per 1,000

Very Low Birthweight Births

Shapiro, Marlow,

Outcome et al.a

et al.b

Normal outcome ... , . . . . 390 331

Moderate impairment . . . . 102 125

Severe impairment . . . . . . . 69 74

Dead (neonatal

mortality rate)c 

. . . . . . . . . 439 470

as Shapiro, M C, McCormick, B H Starfleld, et al., “Changes In infant Morbldlty

Associated With Decreases in Neonatal Mortal ity,” Pediatrics 72(3)”408-415, 1983

Shapiro, et al , defined adverse outcomes among surwvors in the following terms

1 ) severe /rnpa/rment (! e , a congenital anomaly likely either to shorten Ilfe or

affect function severely and/or a gross motor delay corresponding to a develop.

mental quotient (DQ) < 70), 2) moderate impafrmenf (1 e , a congenital anomaly

likely to affect funct!onlng moderately and/or a suspect gross motor performance

correspond ng to a DO of 70 to 79; and 3) mild congenital anoma/y (i e , a congenital anomaly Ilkely to have a minor effect on functioning). The sharpest distinction is between the first category of severe conditions, wh!ch Invariably

require extensive medtcal resources and often require social support, and the

latter two categories. In this table, OTA classified mild congenital anomalles

as normal outcomes.

bN Marlow, S,W, D’Souza, and M L Chlswlck, “Neurodevelopmental outcome

In Babies Weighing Less Than 2,001 g at Birth, ” Br Med J 2941582.1588, 1987

Marlow, et al., defined adverse neurodevelopmental outcomes among survivors

in three major groups” 1 ) major handicap (cerebral palsy, developmental retardation (Gr!fflths quotient or IQ < 71), blindness or deafness sufficient to warrant

special education, and hydrocephalus, 2) minor deve/opmenta/ impa(rmenf

(squints, minor degrees of refractive error or hearing loss, abnormalities of mus.

cle tone without disablllty, poor fine motor function, non febrile fits, or border.

line results of psychometric testing (Gnff!ths quotient or IQ from 71 to 85).

cThe neonatal mortality rate is defined as the number of lnfantS who dle in the

first 28 days of Ilfe per 1,000 Ilve births

SOURCE Off Ice of Technology Assessment, 1988
226 ● Healthy Children: Investing in the Future

Table G-6.— Health Outcomes Per 1,000 Live Births by Birthweight Category

Low birthweight Normal

Total birthweight All

Outcome at the end of 1 yeara

<1,500g 1 ,500-2,500g ( < 2,500g) ( > 2,500g) birthweights

Normal outcome . . . . . . . . . . . . . . . . . 364 818 744 909 899

Moderate impairment . . . . . . . . . . . . . 96 106 104 68 69

Severe impairment . . . . . . . . . . . . . . . 65 40 44 18 20

Dead (infant mortality rate)b . . . . . . . 475 36 108 5 12

ashaPirO, ~1 al,, d~fl”ed adverse outcomes among survivors In the following terms’ 1 ) severe impairment (i e., a Congenital anomaly Ii kely e!ther to shorten life or affect

function severely and/or a gross motor delay corresponding to a developmental quotient (DO) < 70); 2) moderate impairment (i.e , a congenital anomaly I!kely to affect

functioning moderately and/or a suspect gross motor performance corresponding to a DQ of 70 to 79, and 3) rrri/d congerrita/ artorna/y (i e , a congenital anomaly likely

to have a minor effect on functioning). The sharpest distinction is between the first category of severe conditions, which invariably require extensive medical resources

and often require social support, and the latter two categories In this table, OTA classified mi Id congenital anomal!es as normal outcomes

bThe infant mo~ality rate is defined as the number of infants who die in the first year of Ilfe Per 1,000 live births

SOURCE Reproduced by permission of Pediatrics. S. ShaDiro, M C McCormick, B H Starf!eld. et al ‘( Chances . In Infant Morhidlty -, Associated With Decreases tn Neonatal Mortality, ” Pediatrics 72(3):408-415, 1983

Note also that the Shapiro, et al., data in table G-6

are based on developmental outcomes in 1978-79 and

therefore do not capture the impact of new technologies introduced since then, such as those in neonatal

intensive care units (665). To the extent that the disability rate at age 1 has improved since 1980, OTA’s

analysis overestimates the long-term health care costs

of low birthweight.

Assumptions About the Kinds of Services Received.

—Because information on the kinds of services that

will be provided to children who have severe or moderate developmental impairments at age 1 does not exist, OTA’s analysis is based on the care provided to

severely and moderately mentally retarded people in

the United States. Barden, et al. (46), analyzed the lifelong services required for mentally retarded people in

the following categories: institutionalization, foster

care, adult care and services, and special education.

OTA included these services and one more, early intervention programs, in its cost-effectiveness analysis.

Barden, et al. (46), assumed that all severely mentally retarded people would require institutionalization. In addition, they assumed that one-half of all

moderately or mildly mentally retarded people would

receive foster care from age 5 to 20, and that all of

them would receive adult care and services from age

20 for life. In the general population, less than half of

the severely mentally retarded people in the United

States are actually in public and private mental retardation facilities (361). The placement of the others,

whether at home or in foster or residential care, is

unclear.

In its analysis, OTA used two sets of assumptions

regarding the special services provided to severely and

moderately impaired children (see table G-7). The

high-cost estimate of the costs of long-term care is

based on the assumption that all severely impaired

children will receive institutional care from age 5 to

35. The low-cost estimate, on the other hand, is based

on the assumption that only 25 percent of severely impaired children will receive institutional care from age

5 to 35. Another 25 percent will receive foster care

from age 5 to 20, and the remaining 50 percent will

Table G-7.—Assumptions Regarding the Special

Services Required by the Severely and Moderately

Impaired Populations in OTA’s Analysis

(in 1986 dollars, undiscounted)

Severely impaired

Institutional care

(ages 5-35). . . . . . . . . . . . .

Foster care

(ages 5-20). . . . . . . . . . . . .

Adult care and services

(ages 21-35). . . . . . . . . . . .

Special education

(ages 4-10). . . . . . . . . . . . .

(ages 1 1-15). . . . . . . . . . . .

(ages 16-20). . . . . . . . . . . .

Early intervention

(ages O-3). . . . . . . . . . . . . .

Moderately impaired

Institutional care

(ages 5-35). ... . . . . . . . .

Foster care

(ages 5-20). . . . . . . . . . . . .

Adult care and services

(ages 21-35). . . . . . . . . . . .

Special education

(ages 4-10). . . . . . . . . . . . .

(ages 1 1-15). . . . . . . . . . . .

(ages 16-20). . . . . . . . . . . .

Percent of population

receiving service

High-cost

estimate

Low-cost

estimate

100 %

0%

0%

100 ”/0

100 ”/0

100”/0

100 ”/0

0%

50%

100%

100%

100%

100%

Early intervention

(ages O-3). . . . . . . . . . . . . . 100%

SOURCE Off Ice of Technology Assessment, 1988

25%

25%

75%

100%

100%

100%

100%

0%

25%

100%

100%

100%

100”/0

100 ”/0
Appendix G—Background Information on Prenatal Care ● 227

be cared for at home from age 5 to 20. A further assumption in the low-cost estimate is that beginning at

age 21, all noninstitutionalized severely impaired individuals will receive adult care and services until at

least age 35.

In both the high- and low-cost estimates, it is assumed that none of the moderately impaired population will enter institutions. The high-cost estimate is

based on the assumption that 50 percent of moderately

impaired children will receive foster care and 50 percent will receive care at home from age 5 to 20. The

low-cost estimate is based on the assumption that only

25 percent of moderately impaired children will receive

foster care from age 5 to 20; 75 percent will receive

care at home from age 5 to 20. In both the high- and

low-cost estimates, it is assumed that all moderately

disabled individuals will receive adult care and services from age 21 to 35.

The other special services for the impaired population included in OTA’s analysis were special education and early intervention programs. In Barden, et

al. (46), the level of special education required (and

associated costs) depended on a child’s age and level

of mental retardation, although both severely and

moderately retarded children received special education from ages 4 through 20. OTA adopted Barden,

et al. ’s assumption about special education for severely

and moderately impaired children.

Early intervention is a new and evolving concept in

the care of disabled children, so the estimated levels

of care (and associated costs) vary. In one study, early

intervention was provided for both severely and moderately developmentally disabled children from birth

through age 3 (736). OTA assumed that all moderately

and severely disabled children would receive early intervention through age 3.

Assumptions About the Cost of Care.—In the study

by Barden, et al. (46), the costs of institutionalization

were calculated on the basis of data obtained at the

Wisconsin Center for Developmental Disabilities.

Barden, et al. ’s estimate of $36,500 per year in 1982

is similar to national information obtained by OTA

for 1985 ($35,000 to $45,000) (361). Barden, et al., subtracted $4,000 per year from their figure of $36,500

to net out normal personal consumption costs, yielding an estimate of $32,500 per year (in 1982 dollars).

OTA’s analysis incorporates Barden, et al.’s assumptions about the cost of institutional care. Since costs

reported in Barden, et al. ’s analysis were in 1982 dollars, however, OTA adjusted them to 1986 dollars

using the medical care component of the Consumer

Price Index (an increase of 13.6 percent). This adjustment yielded an estimated cost of institutionalization

in 1986 dollars: $36,920 per year (see table G-8).

Table G-8.—Assumptions Regarding the Annual Cost

of Special Services Required by the Severely and

Moderately Impaired Populations in OTA’s Analysis

(in 1986 dollars, undiscounted)

Annual cost per child

receiving the service

Annual cost of institutional care

(ages 5-35) . . . . . . . . . . . . . . . . . . $36,920’

Annual cost of foster care

(ages 5-20) . . . . . . . . . . . . . . . . . . $ 5,680’

Annual cost of adult care and

services (ages 21-35) ... ... $13,632

Annual cost of special education

(ages 4-10) . . . . . . . . . . . . . . . . . . $ 5,888

(ages 1 1-15) . . . . . . . . . . . . . . . . . $ 6,549

(ages 16-20) . . . . . . . . . . . . . . . . . $ 6,501

Annual cost of early intervention

(ages O-3) . . . . . . . . . . . . . . . . . . . $2,045 to $4,089

aThiS estlnl’te does not Include $4, S44 In perSOOal Consurnptlon costs

bspe,-.lal education costs represent those costs in excess of cOSt S of normal

educatton

SOURCE Off Ice of Technology Assessment, 1988

OTA’s assumptions about the costs of foster care

and adult care and services are similarly based on those

of Barden, et al. (46) and updated to 1986 dollars. The

annual cost of foster care in 1986 dollars is estimated

to be $5,680, and the annual cost of adult residential

care and services is estimated to be $13,632.

Special education costs, as mentioned above, depend on age and the level of mental retardation. The

cost assumptions of Barden, et al. (46), are based on

a nationwide study by Kakalik, et al. (313). Assuming that all mentally retarded people receive special

education, and in the absence of further national information on the added costs of special education,

OTA figures used the same figures for both its highand low-cost estimates.

For the costs of early intervention from birth to age

3, OTA used as a low-cost estimate Walker and colleagues’ (736) estimate of $2,045 per year (in 1986 dollars). Since Walker and colleagues’ estimate was based

on one program in one area and since the concept of

early intervention itself is evolving, OTA’s high-cost

estimate was double this figure: $4,089 per year.

The costs shown in table G-8, which summarizes

OTA’s assumptions regarding the long-term costs of

services provided to moderately and severely impaired

children, are in 1986 undiscounted dollars. Because

long-term costs of services are spread out over 34

years, however, costs incurred in the distant future

must be discounted to their present (1986) value.

The choice of a discount rate is somewhat arbitrary.

Although the rate should represent society’s valuation

of the costs of the opportunity of present v. future consumption, it is difficult to know what rate actually rep-
228 ● Healthy Children: Investing in the Future

resents that value. Barden, et al. (46), used a 7-percent

discount rate. Others have used higher rates, up to 10

percent. Ten percent appears to be quite high as a discount rate in real after-tax dollars. Indeed, 7 percent

may itself be high. (A high discount rate implies a

lower cost estimate than a low discount rate. ) OTA

applied a 7-percent discount rate to both its low-cost

estimate and its high-cost estimate of the cost of special services required by moderately and severely impaired populations. OTA also applied a 4-percent discount rate to these two estimates.

Results. —Table G-9 presents the estimated lifetime

cost of special services for each moderately and severely impaired child, discounted at 4 percent and 7

percent. For the moderately impaired, the discounted

lifetime cost of services ranges from $90,000 to

$167,000 in 1986 dollars. For the severely impaired,

the cost ranges from $177,000 to $634,000. Although

the range in each case is wide, the lifetime costs are

high even under the most conservative assumptions.

The percentage of births that result in severe and

moderate impairment varies by birthweight category.

The expected lifetime cost of special services per birth

in each birthweight category is shown in table G-10.

Table G-9.—Low-Cost and High-Cost Estimates:

Lifetime Cost of Special Servicesa for Each

Moderately and Severely Impaired Child

(in 1986 dollars, discounted at 4 and 7 percent)

Cost per child

Moderately Severely

impaired impaired

Low-cost estimate

4°/0 discount rate . . . . . . $147,000 $292,000

70/o discount rate . . . . . . $90,000 $177,000

High-cost estimate

4°/0 discount rate . . . . . . $167,000 $634,000

7°/0 discount rate . . . . . . $106,000 $413,000

%ost of special services for impaired Individuals from 1 to 35 years of age.

SOURCE Office of Technology Assessment, 1988

The estimates in table G-10 can be used to calculate

the net long-term savings that can be expected from

reducing the rate of low birthweight. Two assumptions

underlie the calculation:

● moving a birth from the low birthweight category

to the normal birthweight category will reduce the

probability of impairment to the level experienced

by infants in the normal birthweight category;

and

● reductions in the number of low birthweight babies in each low birthweight category (moderately

low birthweight and very low birthweight) will

occur in proportion to the relative frequency of

these categories in the population of births. (In

1985, 82 percent of all low birthweight infants

were moderately low birthweight; 18 percent were

very low birthweight.)

According to OTA’s calculation based on these assumptions, the net long-term savings that would be

gained by preventing each low birthweight birth (i.e.,

moving it to the normal birthweight category) would

be between approximately $9,000 and $23,000 (see

table G-II). Or, restated, the net long-term cost of

each low birthweight birth is between $9,000 and

$23,000.

The Impact of Health Insurance Coverage on

the Use of Prenatal Care

OTA’s cost-effectiveness analysis in chapter 4 used

data from the 1982 National Survey of Family Growth

to estimate the proportion of pregnant women newly

eligible for Medicaid who would switch from late initiation of prenatal care to care in the first trimester of

pregnancy as a result of the expansion of Medicaid

eligibility to all pregnant women in poverty. OTA

assumed that 44 percent of women who are newly

eligible for Medicaid, and who would not otherwise

receive first-trimester care, would switch to first-triTable G-10.—Low-Cost and High-Cost Estimates: Expected Lifetime Cost of

Special Servicesa Per Birth in Specified Birthweight Categories

(in 1986 dollars, discounted at 4 and 7 percent)

Cost per birth by birthweight category

Normal Moderately low Very low

birthweight birthweight birth weight

Low-cost estimate

40/o discount rate . . . . . . . . . $15,000 $27,000 $33,000

70/o discount rate . . . . . . . . . $9,000 $17,000 $20,000

High-cost estimate

40/o discount rate . . . . . . . . . $23,000 $43,000 $57,000

70/o discount rate . . . . . . . . . $15,000 $28,000 $37,000

acost of special Sewices for impaired individuals from 1 to 35 Years Of a9e

SOURCE: Office of Technology Assessment, 1988.
Appendix G—Background Information on Prenatal Care ● 229

Table G-1 1 .—Low-Cost and High-Cost Estimates:

Net Long-Term Costa of Low Birthweight Per Birth

(in 1986 dollars, discounted at 4 and 7 percent)

Low-cost estimate

4°/0 discount rate . . . . . . . . . $13,080

7°/0 discount rate . . . . . . . . . . . . . $ 8,540

High-cost estimate

4°/0 discount rate . . . . . . . . . . . . . . . . . . . . $22,520

7°/0 discount rate . . . . . . . . . . . . . . . . . . . . $14,620

acost from age 1 to 35

SOURCE Off Ice of Technology Assessment, 1988

mester care as a result of expanded eligibility for Medicaid. This assumption is based on the fact that approximately 44 percent of pregnant women who were

eligible for Medicaid in 1982 received first-trimester

prenatal care.

Other data are available on the use of prenatal care

by insurance status, but in most available studies, the

comparison group was not limited to women in poverty. Spitz, et al., using 1976-78 data from Georgia,

found that the proportion of Medicaid recipients receiving first-trimester prenatal care differed little from

the proportion in three non-Medicaid comparison

groups consisting of participants in two other publicly

subsidized programs and women with less than a high

school education (609a). The women with the highest

rate of first-trimester care were the women of low

educational attainment who were not served by any

publicly subsidized program. The women most probably had higher incomes than those served by the public programs,

Norris and Williams, in a 1978 study in California,

found that non-Medicaid women (including nonpoor

women) obtained earlier prenatal care than Medicaid

women in that year (462a). Cooney studied prenatal

care among women in New York City with less than

12 years of education in 1981 (117a) and compared the

percentage of Medicaid recipients receiving late or no

prenatal care with that of privately insured women in

30 subgroups defined by race, marital status, and age.

In 23 of the 30 subgroups, the percentage of Medicaid

recipients receiving delayed or no care was higher than

the percentage of women with private insurance.

Hadley examined differences between Medicaid and

non-Medicaid women in poverty in the number of

maternity care visits as reported on the National

Health Interview Survey between 1978 and 1982

(243a). Hadley analyzed a sample of women with infants 3 months of age or younger at the time of the

interview. Annual doctor visits reported by these

women largely reflected prenatal visits but also included postpartum care and visits not directly related

to the pregnancy. Medicaid recipients had on average

one and one-half more visits than did the uninsured

women (see table G-12). The insured poor women had

more visits on average than either Medicaid recipients

or the uninsured women. This fact probably reflects

the higher family income and stability among the inTable G-12.—Annual Doctor Visits and Other Characteristics of a Sample of Poor Women With an Infant

3 Months of Age or Younger, by Health Insurance Statusa

Women without Women with Women with insurance

Characteristics health insurance Medicaid other than Medicaid

Number of women in sample . . . . . . . . . . . . . . . . 71 98 132

Education (yrs.) . . . . . . . . . . . . . . . . . . . . . . . 10.9 10.6 11.7

Real income per family member (1982 dollars) . $1,672 $1,438 $2,429

Black . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19.7% 42.9% 18.20/o

Community type

Central city. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28.2% 48.0% 28.0%

Rural . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 56.3% 19.4 % 40.20/o

Region

Northeast . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.9% 23.5% 17.5%

South . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53.5% 24.5% 43.90/0

North central . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15.5% 31.6% 25.00/o

West . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21.1% 20.45 13.60/o

Marital status and age

Unmarried, 17-19 . . . . . . . . . . . . . . . . . . . . . . . . . . 9.9% 21. % 3.80/o

Unmarried, 20+ . . . . . . . . . . . . . . . . . . . . . . . . 8.5% 45.9% 6.1%

Married, 17-19 . . . . . . . . . . . . . ... . . . . . . . . . . . 12.7% 5.1% 12.1%

Fair or poor health . . . . . . . . . . . . . . . . . . . . . . . . . 14.1% 17.3% 12.1%

Number of annual doctor visits per womanb 

. . . 11.0 12.6 13.1

aTh e data In this table are based on a sample of poor women (I e , women Ilvlng In famllles In which the real income per family member is less than $3.500 in 1982

dollars) who responded to the 1978, 1980, or 1982 Nat{onal Health Interview Survey Insurance status reflects coverage at some time during the lntervlew year. It was

not possible to Identify when during the pregnancy coverage of a given type began

bReported annual doctor visits prlmarlly reflect prenatal care vIs Its, but also Include vlslts for postpartum care and for care unrelated to a woman’s Pre9nancY

SOURCE J Hadley, calculations based on the 1978. 1980, and 1982 National Health Interview Survey, 1987
230 ● Healthy Children: Investing in the Future

sured poor (e. g., income per family member was 68 ever, that eligibility for third-party payment, whether

percent higher among the insured poor than among it be Medicaid or other insurance, has a real effect on

Medicaid recipients). Hadley’s data show clearly, how- the quantity of prenatal care that poor women receive.
Appendix H

Disorders Currently Detectable

by Newborn Screening

Introduction

As noted in chapter 5, the identification of phenylketonuria (PKU) and discovery of the treatment to prevent its associated mental retardation provided the first

major impetus for routine newborn screening. The

clinical course and characteristics of PKU and the following eight congenital disorders detectable through

newborn screening are described below:

1. congenital hypothyroidism,

2. galactosemia,

3. maple syrup urine disease (MSUD),

4. homocystinuria,

5. biotinidase deficiency,

6. sickle cell anemia,

7. cystic fibrosis, and

8. congenital adrenal hyperplasia (CAH).

These disorders (with the exception of most cases of

congenital hypothyroidism) are genetic in origin and

are transmitted in a recessive genetic pattern. They are

amenable to newborn screening techniques because of

quantitative or qualitative differences detectable in certain biochemical markers. As outlined below, some of

the disorders are treatable by supplying the missing

enzyme or end product or by removing substances

from the child’s environment.

Phenylketonuria

The group of disorders that are included under the

heading of PKU share a common feature: impaired metabolism of phenylalanine, an amino acid contained

in protein. This genetic abnormality prevents the normal conversion of phenylalanine into tyrosine, a reaction occurring in the liver (454). Defects in the production of certain enzymes result in the progressive

accumulation of phenylalanine in the blood and tissues. The abnormally high levels of this amino acid

in the blood and tissues interfere with brain development and cause damage to the central nervous system,

although the mechanism by which this damage occurs

is not known (597).

Newborn infants with PKU appear normal at birth

and, because of the disease, frequently go on to develop excessively blond hair, blue eyes, and fair skin.

Various manifestations of the disorder begin to appear

in the first few months of life, including irritability,

diaper rash, seizures, and delayed development. Gradually, it becomes apparent that the infant is obviously

mentally retarded. It is estimated that 96 to 98 percent of all untreated infants with classical PKU will

become mentally retarded, most of them severely or

profoundly retarded (644). 1 With supportive care

alone, the disease is not directly lethal, but the overall lifespan of mentally retarded individuals with PKU

is reduced. The incidence of classical PKU is usually

between 1 in 10,000 and 1 in 15,000 live births (378),

although in some populations it is even rarer (e. g.,

PKU is particularly rare in blacks).

Treatment consists of restriction of dietary phenylalanine to the minimum amount required for growth

and development. A special formula for newborns and

a food substitute for older children that restricts intake of phenylalanine from the diet is necessary to provide a nutritionally adequate diet when natural protein sources are restricted. If the special diet is begun

before 2 to 4 weeks of age and maintained properly

throughout development (and possibly indefinitely),

infants with PKU can attain normal development, behavior, and intelligence. Such treatment generally does

not reverse mental retardation if started well after

symptoms have appeared. However, recent evidence

suggests that some perceptual motor problems and

learning disabilities may exist even in treated children

with PKU, and it is not yet known whether these can

be completely avoided (485). The average lifespan of

treated individuals is unknown, but it is expected to

be unaffected by PKU. Periodic monitoring of blood

phenylalanine levels is needed to ensure that the level

is within safe limits during development, and a nutritionist usually assists in monitoring and coordinating

nutritional regimens. Current recommendations are

that the special diet be continued indefinitely. The need

for dietary restriction in individuals with PKU beyond

adolescence has not been investigated.

For many years, it has been known that excess

phenylalanine in a mother acts as a teratogen to the

fetus: high maternal blood phenylalanine levels (above

‘PKLI a condlt]on characterized b}, the progrewave accumulation of

phenylalan]ne ]n the blood and tissues (hyperphenylalanlnernla), ex]sts not

t~nl}, In Its classical form, which IS associated with severe mental retardation,

but”also In a spectrum ot milder forms, m wh]ch developmental delay IS more

variable Some 01 the milder forms do not result In mental retardation and

do nnt requtre treatment

231
232 •Healthy Children: Investing in the Future

20 mg/dl) during pregnancy are associated with a high

rate of mental retardation, microcephaly, congenital

heart defects, and low birthweight among offspring of

women with untreated maternal PKU (346,392). Maintaining normal phenylalanine levels by dietary restriction in mothers with PKU can be successful in preventing at least some of these adverse effects in offspring

(371), but treatment of women with PKU after a pregnancy has begun appears to be ineffective or only partially effective.

The overall efficacy of a phenylalanine-restricted

diet during pregnancy in preventing the complications

of maternal PKU is currently being examined by a U.S.

and Canadian prospective collaborative study funded

by the National Institute of Child Health and Human

Development (346). As many as possible of the estimated 2,400 women in the United States at risk for

maternal PKU are being followed and advised to go

on the special diet before and during pregnancy. After the study is complete, the responsibility for tracking women with PKU during their childbearing years

will fall on the individual screening programs. This

tracking will require reliable monitoring systems and

thorough educational efforts to maintain contact with

women at risk.

Congenital Hypothyroidism

Infants with congenital hypothyroidism have a deficiency of thyroxine (T4), a hormone essential for physical growth and early brain development. Without

thyroxine, permanent, irreparable brain damage occurs, The thyroid gland may be missing, incompletely

developed, dislocated, or dysfunctional in congenital

hypothyroidism (551), and each form of the disease

may be associated with a different cause, Accordingly,

symptoms vary widely among children with congenital hypothyroidism, and the prognosis may vary from

case to case (360). In all of them, however, the infants’

thyroid glands are unable to produce sufficient thyroxine, whether or not there are high serum levels of

thyroid-stimulating hormone,

Congenital hypothyroidism is several times more

frequent than PKU, with an incidence rate estimated

at 1 in 3,000 1 in 4,000 live births. It is one of the

more common causes of mental retardation, and is

more common in girls than in boys. It is not considered to be genetic in origin in more than about 25 percent of cases. Most infants with congenital hypothyroidism lack conspicuous features of the disease in the

first few days after birth. Later on, constipation,

lethargy, prolonged jaundice, poor feeding, and hypothermia are among the nonspecific neonatal symptoms

that commonly develop (360). The progressive course

of the disease eventually results in mottled dry skin,

coarse facial features, growth retardation, and impaired motor function. Most critically, the disease interferes with brain function and normal growth and

development, and leads to some degree of mental

retardation. Before screening for congenital hypothyroidism was available, most infants with the disease

were diagnosed on the basis of some of these symptoms sometime after 3 months of age or even much

later. By that time, however, irreversible damage to

the brain had usually occurred.

Treatment for congenital hypothyroidism depends

on daily oral ingestion of tablets containing L-thyroxine to raise serum thyroxine levels into the normal

range. The tablets should be taken indefinitely, and

serum thyroxine levels should be monitored periodically to prevent overtreatment or undertreatment.

Treated children appear to be normal in intellectual,

psychosocial, and physical development. Recent observations have suggested, however, that there may

be some residual behavioral problems; subtle, minor

differences have been noted between some treated children and their normal siblings (550). The severity of

the children’s condition at birth and the time it took

to bring their serum thyroxine levels into the normal

range may account for these findings, but systematic,

long-term followup is needed to determine final outcome. There is general agreement that screening and

early treatment are essential to improved outcome in

patients with this disorder.

Galactosemia

The initial symptoms of galactosemia occur in the

first week of an infant’s life, with vomiting after the

start of milk ingestion. Increasing lethargy and liver

dysfunction may occur soon thereafter, and unless

treated immediately, galactosemia can be rapidly fatal, Septicemia (blood poisoning) and progressive liver

damage are the most common causes of death in infants with untreated galactosemia. Mental retardation,

cataracts, and cirrhosis of the liver are the most frequent consequences of suboptimal treatment in the survivors who are eventually diagnosed on the basis of

clinical presentations. The average age at diagnosis of

these infants is 3 to 6 weeks.

The symptoms of galactosemia result from an accumulation of galactose (a component of the sugar

(lactose) found in milk) and a metabolize known as

galactose-1-phosphate in the blood, leading to excretion of high levels of galactose in the urine. Galactose,

absorbed in the small intestine from milk and milk

products, is normally converted to glucose in the liver.

Infants with galactosemia are deficient in one of the
Appendix H—Disorders Currently Detectable by Newborn Screening ● 233

enzymes that is required to catalyze this reaction, so

galactose and products of its metabolism accumulate

unmetabolized. The disorder is found in approximately

1 in 60,000 live births. Screening for galactosemia using

cord blood would be even better than using newborn

blood in facilitating the earlier diagnosis and initiation

of treatment.

To avert neonatal death or mental retardation, screening for galactosemia must be done in the first few days

of life. Treatment for galactosemia depends on completely eliminating milk and its products from the diet

throughout an individual’s life. Overall, the elimination of milk products prevents early death and promotes normal mental and physical development in

most children with galactosemia, and long-term studies

show normal adult functioning in most early treated

cases (138).

The results of apparently optimal treatment for

galactosemia have not been completely satisfactory in

all cases, as a small percentage of treated children have

had major neurological deficits (546). Many girls with

galactosemia seem to have developed ovarian failure

despite treatment. Finally, a specific speech abnormality (verbal dyspraxia) is being reported in an increasing number of individuals with galactosemia, despite

their having received the same treatment that prevented such symptoms in other individuals (82,735).

Maple Syrup Urine Disease

MSUD (also called branched-chain ketoaciduria) is

a disorder of amino acid metabolism involving the

three branched-chain amino acids: leucine, isoleucine,

and valine. Affected individuals have a deficiency of

one of the enzymes that control the pathway of the

catabolism of these amino acids. Several forms of

MSUD have been reported: a classic, severe form and

milder variant forms. The urine of affected individuals has a distinctive odor that has been described as

smelling like maple syrup. The incidence of classic

MSUD ranges from 1 in 120,000 to 1 in 290,000, with

a figure of 1 in 225,000 being most frequently cited

(455).

Infants with MSUD appear normal at birth, but by

the end of the first week, develop worsening signs of

central nervous system damage with poor feeding and

vomiting. Convulsions and lethargy leading to coma

may occur shortly thereafter. The infants become

progressively more lethargic and may suddenly go into

a coma and die from profound ketoacidosis and brain

damage, not uncommonly in the first 2 weeks of life

(633). Electroencephalographic abnormalities support

the evidence of severe brain dysfunction in infants with

MSUD, Few manage to survive untreated, although

they usually sustain severe mental and motor retardation (453).

Newborn screening for this disorder is useful only

if it leads to rapid diagnosis and immediate treatment

in the first week or two of life. Treatment must be lifelong and consists of dietary restriction of the branchedchain amino acids. As in treatment for PKU, a special

formula is necessary to ensure adequate nutrition. Initiation of the special diet before the onset of acute

symptoms can result in survival with normal intelligence, although the long-term prognosis of treated

children with MSUD is still unknown.

Homocystinuria

Classical homocystinuria is caused by a deficiency

of one of the enzymes involved in the metabolism of

an amino acid known as homocystine. As a result of

this enzyme deficiency, homocystine and another

amino acid, methionine, accumulate in the body and

are excreted in large amounts in the urine. z

The incidence of classical homocystinuria has been

estimated at 1 in 200,000 live births (437), but this figure may be an underestimate since it is based on the

number of cases detected through newborn screening

performed in the first week of life, and screening at

this time may miss as many as 50 percent of affected

cases. The optimal time for collecting blood for newborn screening for this disorder is 4 to 6 weeks of age

(453).

An infant born with homocystinuria develops clinical signs of the disease relatively slowly. Developmental retardation is the first general sign of the disease.

A number of manifestations may appear during childhood or later in life—e.g., downward dislocation of

the ocular lenses; thinning and lengthening of the long

bones; sparse, fair hair; and seizures, Homocystinuria

can lead to life-threatening episodes of vascular thrombosis (clotting of blood). It has been estimated that

most of the surviving, untreated infants with this disease go on to have mental deficiency, and half of them

may die by age 25.

The major mental and motor manifestations of

homocystinuria may be controlled if affected infants

who are not biochemically responsive to vitamin B6

are treated with a diet that restricts dietary intake of

methionine and those who are vitamin B6 responsive

are treated with vitamin B6. Long-term prognosis of

those who are treated, particularly the risk of thrombosis, is not known.

‘Classical homocystinurla, m which there IS an increased methionine level,

can be detected by current tests used in newborn screening. There are other

forms, however, that do not have an Increased methionlne level and cannot

be detected by these tests

72-676 0 - 88 - 6
234 ● Healthy Children: Investing in the Future

Biotinidase Deficiency

The cause of biotinidase deficiency is an inability

to recycle the B vitamin biotin. The incidence of this

disorder has been estimated at 1 in 45,000 live births

(759). Infants with biotinidase deficiency appear normal at birth, but may develop symptoms of the disorder in the first weeks or months of life. The most

common presenting symptoms include seizures, ataxia,

hypotonia, developmental delay, hearing loss, skin

rash, and/or loss of hair. If untreated, biotinidase deficiency can lead to acidosis, resulting in coma or death

in infancy (760).

Biotinidase deficiency is one of the most recent additions to newborn screening programs, so current experience with its diagnosis and treatment is still limited.

Since symptoms can appear as early as 3 weeks of age

and can be rapidly fatal, screening in the first week

of life is probably the optimal time for detecting this

disease. Experience to date suggests that affected infants can improve markedly with oral doses of biotin

and that this treatment can prevent most or all of the

symptoms of the disease. If treatment for biotinidase

deficiency is begun too late, however, irreversible neurologic damage can result. Evidence suggests that this

damage can occur before the onset of overt clinical

signs of the disease (760).

Sickle Cell Anemia

Sickle cell anemia is caused by an abnormality in

the beta globin chain of the oxygen-carrying molecule,

hemoglobin, in the blood. The red blood cells become

distorted in shape and have shorter useful lifespans in

the circulatory system. The misshapen cells block small

blood vessels, obstructing the flow of blood, leading

to cell death in various organs in the body. The disease occurs in about 1 in 500 U.S. black newborns and

also with relatively high frequency among people of

Mediterranean and Middle Eastern descent.

The clinical course of sickle cell anemia is quite variable. Appearing normal at birth, infants with this disease may seem to be in pain and act irritable without

apparent reason. Some infants with sickle cell anemia

succumb to severe bacterial infections, such as septicemia, pneumonia, or meningitis in the first few years

of life. When these infections occur, they can develop

without overt initial symptoms or fever and may proceed rapidly, with death occurring in less than 12

hours. Overall, there may be a 10- to 20-percent mortality rate in infants with sickle cell anemia in the first

year of life. Between 6 months and 1 year of age,

chronic hemolytic anemia may begin to manifest itself, leading to long-term, debilitating complications

that affect general health, growth, and development.

Painful episodes of vase-occlusive crises (i.e., obstruction of veins and arteries) are the hallmark of the disease. For the majority of infants with sickle cell anemia who survive infancy, there is wide variability in

severity of the disease through childhood, adolescence,

and adulthood.

There is no overall treatment or cure for sickle cell

anemia. It is possible to prevent the occurrence of overwhelming infection in children with the disease by administering prophylactic penicillin beginning by 4

months of age and continuing beyond age 3. Such

treatment has been shown to reduce overall morbidity and mortality from infection in affected infants

(198,747). Blood transfusions may be needed at various times to increase oxygen-carrying capacity. Ongoing monitoring and treatment of acute crises may

be necessary to maintain an adequate quality of life.

Newborn screening for sickle cell anemia, allowing

administration of antibiotics before the disease would

normally have been diagnosed, may be lifesaving for

a certain percentage of infants with the disease. For

others, it may allow for improved medical care by

directing these infants to specialized treatment centers

at an earlier time,

Cystic Fibrosis

Cystic fibrosis is a disorder of exocrine glands, characterized by thick secretions obstructing different organs, particularly the lungs, sweat glands, and pancreas. Its underlying cause is unknown, but it seems

to involve a defect in chloride transport across cell

membranes. It is thought to be the most common potentially fatal genetic disease in the Caucasian population, with an incidence of about 1 in 2,000 live births.

In most infants with cystic fibrosis, the disease begins its course with nonspecific symptoms. Some infants are detected at birth because of a specific form

of bowel obstruction (meconium ileus). Most cases,

however, manifest in infancy or early childhood with

failure to thrive, diarrhea due to poor digestion and

absorption of food, and persistent or recurrent signs

of lung infections, which are due to thick sticky mucus in the bronchial tree.

Children with cystic fibrosis have no associated

mental disabilities. Their overall physical problems—

poor growth, intestinal malabsorption, recurrent pneumonias, and chronic respiratory disease—are progressive and disabling, however, and have social as well

as medical consequences. Improvements in medical

care and increased awareness of the disease have led

to better survival in children with cystic fibrosis. Although death in childhood still occurs as a result of
Appendix H—Disorders Currently Detectable By Newborn Screening ● 235

the disease, the average lifespan of affected individuals who have been treated through normal medical

channels is now above 20 years.

Current treatment for cystic fibrosis is partially

preventive and partially palliative. The inability to secrete normal amounts of digestive enzymes into the

intestines (preventing the absorption of protein and fat

from the diet) leads to nutritional deficiencies that can

be corrected with supplemental vitamins and pancreatic replacement therapy if the disease is diagnosed

sufficiently early in life. Salt supplements may be

needed to counteract excessive salt loss in sweat, and

antibiotics administered prophylactically can reduce

incidence and effects of infections. Respiratory dysfunction eventually predominates, however, and generally determines the severity of the case. Obstructive

lung disease with heart failure is the most common

cause of death in individuals with cystic fibrosis, and

at present, there is no cure for this problem. Whether

early diagnosis and treatment will improve the longterm prognosis for patients with cystic fibrosis is still

uncertain.

Congenital Adrenal Hyperplasia

The most common form of CAH, resulting from a

deficiency of the enzyme 21-hydroxylase (276) affects

clinical manifestations in infant girls more dramatically

than in infant boys. The typical female patient with

the disease is born with masculinization of the external genitalia and may be sent home from the hospital

as a male, while the typical male infant with the disease has normal genitalia at birth. In the first week of

life, a significant proportion of patients with the saltwasting form of CAH (about one-half of all patients

with the disease) undergo a severe salt-losing crisis that

is rapidly fatal if not treated immediately.

Some infant girls with CAH who survive the first

few weeks of life require reconstructive surgery, but

if the underlying cause of their disease is not treated,

they will continue to masculinize and may go on to

have short adult stature, and no breast development

or menstruation. In contrast, the typical infant boy

with CAH appears to develop normally in infancy, but

enters puberty prematurely, resulting in short adult

stature.

CAH results from a deficiency of one or another of

the enzymes in the adrenal cortex that are required for

normal steroid hormone synthesis. This prevents the

synthesis of cortisol, leading to excessive androgen

synthesis. In some forms of CAH, aldosterone production is also affected. These hormones are necessary for

the body to manage stress and control salt content of

tissues. The symptoms of CAH result from a deficiency

of some hormones and an overproduction of others.

The prevalence of classic salt-wasting CAH ranges

from approximately 1 in 11,500 to 1 in 18,250 (276,

609), but varies widely in different populations (e.g.,

it occurs in 1 in 3,000 live births in Alaskan Eskimos).

Newborn screening can be particularly useful for detecting and treating the salt-wasting form of CAH,

since infants with this form of the disease are at risk

for sudden death very soon after birth if they are not

properly treated. Infants with either form of the disease

require replacement of missing hormones (hydrocortisone with or without mineralocorticoids) to prevent

excessive androgen production and its effects on growth

and reproductive functioning.
Appendix I

Data and Methods Used in

OTA'S Cost-Effectiveness Analysis of

Strategies for Newborn Screening

This appendix presents information on sources of

data and methods of calculation used in OTA’s costeffectiveness analysis of strategies for newborn screening, which is presented in chapter 5. That chapter considered seven different strategies offering different

combinations of tests for phenylketonuria (PKU), congenital hypothyroidism, galactosemia, maple syrup

urine disease (MSUD), and homocystinuria. Information about the detection and treatment of these and

other disorders is presented in appendix H.

Specimen Collection Costs

The vast majority of first blood specimens for newborn screening are collected in the hospital before a

newborn infant is discharged. The only published data

on costs of specimen collection in the hospital are from

a time study at three Wisconsin hospitals (47). The

average cost of first specimen collection in that study

was found to be $4.60 (in 1982 dollars), which included

the cost of drawing blood, administration, medical recordkeeping, supplies, billing, and overhead. Using the

medical care component of the Consumer Price Index,

OTA inflated the $4.60 from this study to its 1986

value, $6.07, and used this to represent the cost of first

specimen collection in the base case analysis.

Most second specimens are likely to be collected outside the hospital, possibly during the first recommended

well-child visit at the physician’s office or clinic, and

would therefore entail different costs than first specimen collection. The recommended schedule of wellchild visits offered by the American Academy of Pediatrics Committee on Practice and Ambulatory Medicine specifies that infants should be examined by a physician during the first month after birth and that tests

for PKU and congenital hypothyroidism should be

done at about 2 weeks of age (20). ’ Second specimen

collection performed during such visits would then be

additional to the services performed during the visit,

and would not require a separate visit to the physician’s office solely for that purpose. The assumption

in OTA’s analysis, therefore, was that the costs of col-

‘For more information on the recommended frequency and content of wellchild care, see ch. 6 of this report

lecting a second specimen would not normally include

the separate cost of an office visit to the physician.

Data on the costs of specimen collection performed in

a physician’s office are not available, so it is unknown

whether these costs are greater or less than the collection costs in a hospital.2 For OTA’s analysis, it was

assumed that the cost of collecting a second specimen

would be similar to the cost of collecting the first.3

Laboratory Testing and

Followup Costs

OTA estimated the resource costs of newborn screening for PKU, congenital hypothyroidism, galactosemia, MSUD, and homocystinuria using data provided

by three State newborn screening programs: Washington (609), Wisconsin (259), and Iowa (256). OTA

asked the directors of each of these programs to estimate the cost of resources (divided into personnel time,

amounts of supplies and reagents, and major equipment) applied to laboratory testing and followup for

each of these conditions, and requested an approximate breakdown of cost items in these categories. The

results reflect best available estimates of the value of

resources used to screen for these various disorders.

Using these data, OTA made an effort to include only

the appropriate types of data in each category and to

delete irrelevant and duplicative items.

Based on these three States’ data, the combined cost

of laboratory detection and followup for PKU and

congenital hypothyroidism4 ranged from $3.88 to

$8.16 per specimen, giving a mean of $5.65, which was

‘Both, however, may be different from actual charges that families pay

for the service. Since charges affect only incomes and budgets, rather than

resource costs, they are not considered here.

‘In practice, the cost of second specimen collection in a physician’s office

may actually be less than m a hospital, For comparison, under the Medicare

program, physicians are currently reimbursed $3.00 for handling a blood

specimen that will be sent to an outside laboratory for analys]s (438). Moreover, newborn blood specimens are collected onto filter paper cards, which

are generally easier to handle and transport than whole blood collected in

tubes, so handling a newborn screening specimen may be less costly than

handltng other blood specimens collected by the physician, and can actually

be transported by regular mail service.

‘Since screening for PKU and congenital hypothyroidism is available in

all States, OTA combined the costs of screening for these conditions Into a

single estimate.

236
Appendix l—Data and Methods Used in OTA's Cost-Effectiveness Analysis of Strategies for Newborn Screening ● 237

used in OTA’s base case analysis to estimate the cost

of detection and followup of PKU and congenital

hypothyroidism. The cost of laboratory detection and

followup for galactosemia ranged from $1.25 to $1.60

per specimen in these data, and for MSUD, from $0.98

to $1.84 per specimen. OTA’s base case analysis used

the simple averages of these estimates: $1.43 for galactosemia and $1.41 for MSUD. Only one estimate for

homocystinuria testing and followup was available—

$0.93 per specimen—and that was used in OTA’s base

case analysis.

Table l-l .—Costs of Treatment for PKU

and Congenital Hypothyroidism

Undiscounted costs costs

total treatment discounted discounted

Year of cost costs at 70/0 at 100/0

Phenylketonuria: age 0-20

1982 dollars . . . . $81 ,600’ $40,830 $32,350

1986 dollars . . . . $53,855 $42,670

Congenital hypothyroidism: age 0-70

1982 dollars . . . . $11,240 b $ 3,230 $ 2,270

1986 dollars . . . . $ 4,260 $ 3.588

The differences among the three State newborn

screening programs in estimated screening and followup costs may result from actual technical differences in testing and from different ways of estimating

amounts and costs of resources needed for testing and

followup. In addition, a large portion of their estimated costs may be fixed costs, which do not change

with changes in the number of specimens analyzed.

Further, costs of equipment and personnel may, to

some extent, be fixed costs in screening programs,

while costs of supplies and reagents (generally the least

costly components of testing) would be more closely

related to the specimen volume. Because some percentage of costs is fixed, unit costs in small volume programs are not likely to correspond to unit costs in large

volume programs.

Another possible cause of the variability in unit costs

among these data may be real differences in organization and staffing among the programs, as well as artificial differences in reporting (e.g., inclusions of some

types of costs in one program and not another) or

differing methods for allocating common or overhead

costs. The result is a combination of methodologies.

The costs of laboratory equipment, for example, were

particularly difficult to assess, since ways of determining equipment costs involved different interpretations

of what would be considered “major” equipment and

different ways of valuing them.

Treatment Costs for Cases Detected

by Newborn Screening

Estimates of treatment costs per case of PKU and

congenital hypothyroidism used in OTA’s analysis are

shown in table I-1. The undiscounted costs and their

1982 values were derived from two studies in Wisconsin (46,47). The base case and the best case analyses

applied a 7-percent discount rate to these costs, while

the worst case analysis applied a 10-percent discount

rate.

‘H s Barden, R Kessel, and V E. Schuett, “The Costs and Benefits Of Screening for PKU in Wisconsin, ” Soc/a/ B/o/ogy 31(12) 1-17, 1984

bH.S Barden and R Kessel , “The Costs and Benefits of Screening for Congenl

tal Hypothyro!dlsm in Wlsconsln, ” Social B/o/ogy 31(3-41 185200 1984

SOURCE Of ftce of Technology Assessment, 1988

Treatment costs for PKU include the following costs

spread over the first 20 years of a patient’s life5

: a lowphenylalanine dietary supplement beginning in the first

few weeks of life6 (averaging $2,914 per year, undiscounted 1982 dollars) and clinical followup—including

blood testing, travel, ’ and consultation with physicians, nutritionists, and genetic counselors. Treatment

costs for congenital hypothyroidism include the following costs: clinical followup—including laboratory

testing, physician fees, travel—and medication (thyroxine supplements cost approximately $20 per year,

undiscounted 1982 dollars).

OTA inflated these estimates of PKU and congenital hypothyroidism treatment costs to their 1986 values

using the medical care component of the Consumer

Price Index. In 1986 dollars, total costs of PKU treatment were estimated at $53,855 using a 7-percent discount rate and $42,670 using a 10-percent discount

rate. Total costs of congenital hypothyroidism treatment were estimated at $4,260 and $3,488, respectively.

Comparable data on treatment costs for galactosemia, MSUD, and homocystinuria are not available in

‘The length of time that a given ]nd]v]dual w]th PKU must remain on the

diet IS shll unknown, but preliminary ]nformat]on suggests that beyond age

20 or so, a high phenylalanlne level In the blood ha+ Ilttle or no effect o n

mental capacities However, there may be se]zure+, personality changes, and

other effects of discontinuing the diet. Women with PKU should be advised

to continue the d]et dur]ng their childbearing years to m]n]m]ze the r]sh of

fetal damage Long-term collaborative studies are In progress to determine

if there is an age at which it M sate to dlscont]nue the diet ~ 340)

‘Since the Iow-phenylalanine products are d]etary supplements rather than

a complete alternative food source, and individuals WI th I’KLI can eat natural foods that have little or no phenylalan]ne (though these ma}’ be somewhat more expensive than other foods), the costs of a normal cf]et are not

subtracted from the cost of a PKU diet

“Ideally, travel costs should have been omitted from this analysls, since

they are not costs to the health care sector. Since they contributed only $660

undiscounted I ~82 costs to the total cost of PKU treatment over 20 years

and $780 to the costs of congenital hypothyroidism treatment over 70 years,

however, they are not Ilkely to affect the estimate of treatment costs
238 . Healthy Children: Investing in the Future

the literature. Children with galactosemia require no

special supplemental diet—just avoidance of foods

containing galactose. In OTA’s analysis, costs of treatment for galactosemia are approximated by the reported costs of treatment for congenital hypothyroidism

(46), which include minor costs for medication and

long-term costs of clinical care and monitoring.

Treatment costs for MSUD and homocystinuria in

OTA’s analysis are approximated by the costs of longterm PKU treatment (47), because patients with MSUD

or homocystinuria require a special diet similar to the

PKU diet and also require long-term clinical care and

monitoring. The diets for MSUD and homocystinuria

may be more costly than the PKU diet (and patients

with MSUD may have more crises requiring hospitalization, so their treatment may be more expensive than

treatment for patients with PKU); but since the lifespan

of treated patients with these diseases is unknown, the

difference in costs is unknown. In the absence of firm

data, OTA assumed that the costs of PKU treatment

approximate the cost of MSUD and homocystinuria

treatment, and the cost of congenital hypothyroidism

treatment approximate the cost of galactosemia

treatment,

Health Care Costs Averted by

Newborn Screening and Treatment

Individuals with untreated PKU or congenital hypothyroidism, who are mentally retarded in the majority

of cases, obviously lead lives that are fundamentally

different from those of afflicted individuals in whom

the disease has been treated. The societal costs of mental retardation include the added costs of residential

care and special education, as well as the loss to society of some potential contribution the afflicted individual might have made with a normal level of intelligence. Some costs may also be borne by the family

of the individual with untreated PKU or congenital

hypothyroidism (e.g., reduced earning capacity of one

or both parents due to the increased demands of raising a mentally retarded child compared to a normal

child).

The costs of untreated PKU and congenital hypothyroidism in OTA’s analysis, however, include only

the major costs to the health care sector broadly

defined—in particular, the costs of custodial care and

institutionalization and the cost of special education

for untreated individuals beyond that required for normal individuals. The costs avoided by newborn screening include the lifelong costs of custodial care and special education associated with untreated disease. The

costs averted by treatment of PKU are shown in table

I-2, and those averted by treatment of congenital

hypothyroidism are shown in table I-3.

In calculating these costs, it is necessary to estimate

the expected levels of mental retardation and average

survival in untreated individuals. For PKU, OTA used

the assumptions of Barden and colleagues that 64 percent of individuals with untreated PKU would be inTable 1.2.—Costs of Residential Care and Special Education Averted by Newborn Screening for PKU

Lifetime Lifetime cost Lifetime cost

undiscounted discounted 7°/0 discounted 10°/0

Component of cost cost per person Total cost PKU cost a

Total cost PKU cost a

Residential care and services

a. Institutional care (assumes 64°/0 of PKU cases

institutionalized from age 5 to 70). . . . . . . . . . . . . . .

b. Foster care (assumes 18°/0 of PKU cases receive

foster care from age 5 to 20) . . . . . . . . . . . . . . . . . . .

c. Adult residential care and services (assumes 36°/0

of PKU cases use adult residential care and services from age 20 to 70) . . . . . . . . . . . . . . . . . . . . . . . .

Special education

(by degree of mental retardation)

a. Severe (64°/0 of PKU cases) . . . . . . . . . . . . . . . . . . . .

b. Moderate (20°/0 of PKU cases) . . . . . . . . . . . . . . . . . .

c. Mild (16°/0 of PKU cases) . . . . . . . . . . . . . . . . . . . . . .

Total cost per case

in 1982 dollars. . . . . . . . . . . . . . . . . . . . . . . . . . . .

Total cost per case

in 1986 dollarsb

, . . . . . . . . . . . . . . . . . . . . . . . . .

$913,250 $259,000 $166,000

$67,000 $31,740 $ 6,000

$176,400 $ 20,010 $ 7,000

$ 84,110 $42,020 $ 27,000

$ 75,530 $36,660 $ 7,000

$ 43,270 $ 22,120 $ 4,000

$217,000

$246.512

$181,700 $116,288

$23,950 $ 4,311

$ 9,280 $ 3,341

$ 32,470 $ 20,781

$28,040 $ 5,608

$ 17,250 $ 2,760

$153,089

$173.909

%OUEEIIOndS to the averaae cost Der child with PKU, which IS a function of the Dercent of PKU Individuals reauirina institutionalization (see text for explanation)

blnflate~ from 1982 to 19ti dollars using the Consumer Price Index of 13.60/. fOr this period.

,-

SOURCE: Adapted from H.S E3arden and R, Kessel, “The Costs and Benefits of Screening for Congenital Hypothyroidism In Wisconsin, ” Socfal Biology 31(3-4) 185-200, 1984
Appendix /—Data and Methods Used in OTA's Cost-Effectiveness Analysis of Strategies for Newborn Screening ● 239

Table l-3.—Costs of Residential Care and Special Education Averted by

Newborn Screening for Congenital Hypothyroidism (CH) -

Lifetime

undiscounted

Component of cost cost per person

Residential care and services

a. Institutional care (assumes 15°/0 of CH cases institutionalized from age 5 to 70) . . . . . . . . . . . . . . . $1,845,500

b. Foster care (assumes 25°/0 of CH cases receive

foster care from age 5 to 20) ., . . . . . . . . . . . . . . . . . . $ 46,680

c. Adult residential care and services (assumes 40°/0

of CH cases use adult residential care and services

from age 20 to 70) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . $ 513,480

Special education

(by degree of mental retardation)

a. Severe (1 5°/0 of CH cases) . . . . . . . . . . . . . . . . $ 87,590

b. Moderate (25°/0 of CH cases) . . . . . . . . . . . . . . . . . . . . $ 79,330

c. Mild (40°/0 of CH cases) . . . . . . . . . . . . . . . . . $ 44,820

Total cost per case

in 1982 dollars, . . . . . . . . . . . . .

Total cost per case

in 1986 dollarsa 

. . . . . . . . . . . . . . . . . . . . . . . . .

Lifetime cost

discounted 7%

Total cost CH cost a

$324,600 $48,690

$ 32,420 $ 8,110

$ 41,280 $ 16,510

$ 42,690 $ 6,400

$ 37,520 $ 9,380

$ 22,370 $ 8,950

$ 98,040

$111,373

a[nflated from 1982 tO 19W using the Consumer Pr!ce Index of 13 6° o for this period

SOURCE Adapted from H S Barden and R Kessel ‘The Costs and Benefits of Screening for Congent[al Hypothyroidism In Wlsconsln

stitutionalized from age 5 for life, 18 percent would

require foster care from age 5 to 20, and 36 percent

would require adult residential support services (47).

The net average costs of residential care and special

education were derived from this same study (47)

(given in 1982 dollars and discounted at 7 and 10 percent) and inflated to 1986 values for the OTA analysis. To adjust for the expected lifespan of untreated

individuals with PKU, OTA used survival rates based

on a study of the age at death for institutionalized individuals with PKU (174); that study generally agrees

with previous studies (85).

Costs of untreated congenital hypothyroidism, as

in PKU, derive mainly from the attendant costs of

mental retardation, but the spectrum of severity is

different for congenital hypothyroidism. In these calculations, OTA used the assumptions of Barden and

colleagues that 15 percent of individuals with untreated

congenital hypothyroidism would be institutionalized

from age 5 for life, 25 percent would require foster care

from age 5 to 20, and 40 percent would require adult

care and services from age 20 for life (46). These costs

were combined with the additional cost of special education (46) (given in 1982 dollars and discounted at

7 and 10 percent) and inflated to 1986 values. To take

into account the lifespan of individuals with congenital hypothyroidism, survival was estimated to be 95

percent of normal survival rates (368).

The costs of untreated galactosemia, MSUD, or

homocystinuria are more difficult to quantify. No data

Lifetime cost

discounted 10°/0

Total cost CH- Cost a

$205,400 $30,810

$ 24,250 $ 6,063

$ 17,590 $ 7,036

$ 32,700 $ 4,905

$ 28,440 $ 7,110

$ 17,300 $6,920

$62,844

$71,391

soc~al Btology 31(3-41 185200 1984

are currently available to estimate the cost of the

progressive deterioriation and almost certain death,

as occur in the majority of cases of galactosemia or

MSUD, or the long-term disabilities and risk of premature death, as in cases of homocystinuria. For that reason, OTA’s analysis did not quantify costs of untreated

galactosemia, MSUD, or homocystinuria.

The cost of institutional care for the mentally

retarded was estimated at $36,500 per year per patient

in 1982 dollars (47). This cost was derived from an estimate of the Wisconsin Center for Developmental Disabilities and compared with $32,759, the yearly cost

of residential care derived from national data (362).

In Barden’s analysis, $4,000 was subtracted from the

annual cost of institutionalization to account for the

costs of care for a normal individual (603).

OTA calculated the costs of institutionalization per

patient using the annual cost of institutional care per

patient, the estimated survival of individuals with PKU

or congenital hypothyroidism, and the percentage of

survivors requiring institutional care. The costs of institutionalization reported by Barden et al. (47) were

inflated to 1986 dollars in OTA’s analysis using the

overall Consumer Price Index.

The annual cost of foster care was estimated to be

$9,000, or $5,000 if personal consumption costs are

deducted (47). In PKU, the discounted cost of foster

care amounts to $32,000 (in 1982 dollars) over the

period from age 5 to 20 discounted at a 7-percent rate.
240 ● Healthy Children: Investing in the Future

The annual cost of adult residential care and services was estimated at $12,000 (1982 dollars) per person, but this does not include costs of associated community services, special transportation, or vocational

rehabilitation (47). For individuals with untreated

PKU, the cost of adult residential care services is low

because of the low survival rate to adulthood.

The added costs of special education for survivors

were derived from a nationwide study conducted by

the Rand Corp. (313) and expressed in 1982 dollars

in the studies by Barden and colleagues (46,47). The

original costs in the Rand report were expressed in 1978

dollars and were inflated by Barden et al. to 1982 dollars using the GNP deflator. This method increased

these costs by 34 percent for this period, whereas the

overall Consumer Price Index would have inflated

them by 48 percent for this same period (721),8 For

OTA’s analysis, the costs of institutionalization, foster care, adult residential care and services, and spe-

‘Thls difference In ]nflatlon methods for 4 of the 8 years for which they

are ad]usted is not likely to alter the total discounted cost O( spec;al education In these cases

cial education were inflated to 1986 levels using the

overall Consumer Price Index.

Calculation of Net Costs and

Effectiveness in the Base Case

and Sensitivity Analyses

The calculation that OTA used to estimate the

overall costs or savings and number of cases detected

per 100,000 infants screened is shown by the figures

for Strategy I (a single specimen to test for both PKU

and congenital hypothyroidism) in table I-4. The total

cost of newborn screening and treatment, consisting

of the costs of specimen collection, lab testing, followup,

and treatment, amounts to $1,716,000 per 100,000

infants screened to identify and treat approximately

34 cases of PKU and congenital hypothyroidism when

compared to no screening at all. The expected cost

averted by such screening and treatment amounts to

$4,935,000 per 100,000 infants screened, yielding a net

savings of $3,219,000.
1

2

3

4

5

6

Table 1-4.—Costs and Effectiveness of Seven Newborn Screening Strategies Compared to No Screening (1986 dollars)

Strategy I Strategy II Strategy Ill Strategy IV Strategy V Strategy VI Strategy Vll

1st specimen PKU + CH PKU + CH PKU † CH –

PKU + CH PKU + CH PKU, CH GA, MSUD PKU, CH, GA, MSUD — —.. .

PKU + CH PKU + CH CH only

2nd specimen. None on all on early discharge on all

Infants Infants only infants

Specimen-collection cost per 100,000

Infants screened $ 607,000 $1.214000 $ 858298 $1,214,000

Lab testing and followup cost per

100,000 Infants screened $ 565,000 $1.130.000 $ 799910 $ 875000

Number of cases detected per 100,000

infants screened 34.6 366 3 5 9 3 6 3

Treatment cost for cases detected

among 100 000 Infants screened $ 544.000 $ 568.000 $ 560.000 $ 51.00 0

Total cost of screening and treatment

[1+2+4 ] $1716,000 $2.912,000 $2,217000 $2.640.000

Costs averted [custodial and special

education costs associated with

untreated disease] $4,935,000 $5.198,000 $5,106,000 $5124,000

PKU, CH HC PKU, CH, and HC

on all None on all

Infants infants

$1214000 $ 607,000 $1,214,000

$1,223000 $ 849,000 $1,507,000

371 3 6 4 3 8 9

$ 594,000 $ 572,000 $ 622,000

$3,031,000 $2,028,000 $3,343,000

$5,198000 $4,935,000 $5,198,000

Al) brwat(ons PKU = phenylketonurla CH = congendal hypolhyroldlsm HC = homocystlnurla GA = galactosemla MSUD = maple syrup urine disease

SOURCE Office of Technology Assessment 1988
Appendix J

Effectiveness of Well= Child Care

and Cost-Effectiveness of

Childhood Immunization

As a supplement to the discussion of well-child care in chapter 6, this appendix presents nine

tables summarizing studies of the effectiveness of well-child care and the cost-effectiveness of childhood immunizations. The first five tables summarize various types of studies of the effectiveness of

well-child care as a whole:

● studies of varying the frequency of child health supervision visits,

● studies of comprehensive care programs,

● studies of Medicaid’s Early and Periodic Screening, Diagnosis, and Treatment (EPSDT)

program,

● studies of health outcomes in alternative health delivery and insurance systems, and

. studies of the effects of well-child care on developmental outcomes.

Three subsequent tables summarize studies examining the effectiveness of three specific components

of well-child” care:

. the physical examination,

. the Denver Developmental Screening Test (DDST), and

● anticipatory guidance for child safety restraint use.

The last table is a summary of the studies evaluating the cost-effect

programs.

iveness of childhood vaccination

242
Table J-1.– Effectiveness of Well-Child Care as a Whole: Studies of Varying the Frequency of Well-Child Care Visits

—

Years

—

data Study

Author collected Study population design Sample size Intervention Outcome measures Results Comments

Gilbert, et al 1984a

1979-80 Ontario,

low risk

Hoekelman 1975b

1971-72 Rochester, low

biologic risk–

clinic and Dnvate

RCT 214 experimental Decrease the number of well- Number of physical

252 control child visit from 10 to 5 in abnormalities

first 2 years Number of undetected

abnormalities

Bayley

HOME

Maternal anxiety

Satisfaction with care

RCT 125 experimental Decrease number of well- Knowledge

121 control child visits from 6 to 3 in Satisfaction with care

first year Compliance

Utilization

Number of undetected

abnormalities

No differences Small difference in actual

detected number of well-child

visits—6 19 in experimental

group and 7.89 in control

No differences 1 Extra visits occurred due to

detected contact with nurses c Extra

visits scheduled for experimental clinic patients

2 Inadequate measures of

developmental/behavioral

outcomes

3 Inadequate power for 50%

difference in frequency of

physical abnormalities

4 Outcome assessment not

blinded to study group

Abbrevlatlons RCT – randomized cllnlcal trial, HOME = tests of cognltlve development In the home

aJ R Gilbert, W Feldman, L Seigal. et al. “How Many Well-Baby Vlslts Are Necessary In the First 2 Years of Life?” Can Med AssfI J 130857-881, 1984

bR A. Hoekelman, “What Constitutes Adequate Well-Baby Care, ” Pediatrics 55:313.325, 1975

cThe sample for this study came from two sources. a ~rlvate practice and a c1 I nlc, Those cl!nlc patients who were randomized to recefve a lower freWJenCy Of well. ch!ld visits were nonetheless sc hedu led

for addlt!onal !11 and well-child (Immunization only) v!slts by the nurses or physicians of the clinic

SOURCE Off Ice of Technology Assessment, 1988, based on a background paper by C J Homer, ‘ Evaluation of the Evidence on the Effectiveness of Well-Child Care Services for Child ren, ” prepared for the

Off Ice of Technology Assessment, U S Congress, Washington, DC, April 1987
Table J-2.—Effectiveness of Well-Child Care as a Whole: Studies of Comprehensive Care Programs

Years

data

Author collected Study population Sample size Intervention Outcome measures Results Comments

Study

design

RCT Comprehensive care

(MD, RN, MSW– free)

v usual care

Infant mortality

hospitalization

clinic/EW visits

height/weight

< 10% number of

Immunized

School attendance

No differences 1.

2

1

2

3

1

2

3

4

5.

6.

7

8

1

2

3

4

Inadequate power

Inadequate morbidity and developmental measures

Gordis and 1967-70

Markowictz 1971a

Baltimore primiparous

<18 years

120 experimental

117 control

Enrollment in Children

& Youth Health project—daytime program,

peals, MSW, RN, public

health

Small, statistically significant difference with

+ effect of enrollment

status (3.2 days). likely

self-selection of healthier children into program (selection bias)

No significant change

in absenteeism with

participation; trend to

increased absence

Kaplan, et al 1969-70

1972b

Pittsburgh attendees 2

schools in Iow-income

neighborhood (preschool and school-age

children)

Cross sectional 525 experimental

700 control

Effect of both health center

utilization and absenteeism

Iikely confounded by health

status

Secular trend existed towards

increased absenteeism

Possible selection bias (no

data comparing intervention

and control groups)

Not a representative sample of

a given community

Eligibility not clear

30% dropout–probably not

biasing

Comparative nature experimental and control groups

not documented

Specific morbidity measures

not noted in report

No developmental measures

Multiple comparisons for

statistical testing

Introduction of Medicaid may

have minimized effect

Inadequate power mortality

analysis

Adequate power for some

morbidity outcomes, appropriateness uncertain

Confounding of case finding

and better care

No behavioral outcomes

Cross sectional 991 total

3 groups

Degree of participation

in health center–multidisciplinary, comprehensive, free physical

exam

Moore, and 1968-71 Change in absenteeism

Frank 1973C

Charlestown schoolchildren undergoing

complete physical exam

173 experimental

189 control

No significant difference any morbidity

measure, simiar frequency outpatient visit

with more preventive

visits; no significant

difference overall hospitalization–more surgical,

fewer acute, improved

satisfaction with wait and

professional relationships, improved

process measures

RCT Comprehensive medical

care program–MD, RN,

MSW, v usual care

Child health index utilization, sickness and

drug days, satisfaction,

cost, process use of

preventive services and

Immunizations

Alpert, et al 1964-68 Boston, Children’s

1976d

Hospital–poor, no

other MD live near

hospital

116 experimental

119 control

No significant

differences

Pseudo-randomized

trial

Intensive followup and

home visits v. usual

care

Infant mortality; health

appraisal age 1, uncorrected abnormalities,

global health assessment, Hct, DDST (not

reported), hospitalizations, and outpatient

visits

Rogers, et al 1970-82

1974e

Fort Defiance Indian

reservation Arizona—

live born infants
Augustin, et al

1973’

Gordis 19739

Klein, et al

1973

Briscoe, et al ,

1980’

1970-71

1968-70

1968-70

1975

1977

NYC children enrolled

in Montefiore-Morisania

C&Y project

Baltimore residents

5-14 yr in 1) census

tracts with comprehensive health centers and

2) adjacent, comparable, and all other

tracts

Rochester

1 Catchment area

residents,

2 Health center users

Hazard, Kentucky

Sample of all children

born at ARH hospital,

matched to children

born at comparable

facility

Hybrid design–lSt 40 total

year enrollees

compared to 2nd

year

Ecologick

1. Ecologic

2 Cross sectional

Cohort

study —experimental and control

groups geographically separate

Not relevant

35,068 eligible

Incidence

13 5/100,000

1 8,000 experimental,

7,000 control

2 1,500 to

3,300 users,

6,000

to 4,750

nonusers

65 pairs from

177 pairs in

original group,

79 pairs m new

study group

Not described

Existence of comprehensive care program

in tract

Comprehensive, multispecialty group practice

1 In tract v not in

tract

2 Users v nonusers

Home visits (7) for

counseling, support,

education, and advocacy. plus well-child care

Number of Illness visits

to clinic during 2nd

year of program partcipation compared to age

matched first year enrollees hospital days

per registrant

Rheumatic fever incidence (rates)

Hospitalization rates

and length of stay

Health status physical

exam, otitis media.

hemoglobin count, iron

deficiency, utilizationadmissions and outpatient/EW visits

35% decrease outpatient visits, decrease

in hospitalization rates

from O 36 to O 102

60% decline (p<.005)

in rheumatic fever rates

in eligible census tracts

1 Lower hospital admission rates and

LOS in control tracts

throughout study

2 Users had lower

hospitalization rates

than nonusers and

lower LOS than

nonusers or control

group

No difference in health

status measures, nonsignificant trend to

decreased utilization in

experimental group but

home visits not inincluded

1

2

3

4

1

2

1

2

1

2

3

No description of population

No description of program

Inadequate control group

Time of enrollment and acute

needs related (confounded)

Ecologic studyk

Not specifically related to

child health supervision

Limitations in value of

hospitalization rates as

outcome

Selection bias m use of health

center (initial users were lower risk segment of target

population)

Inadequate control population

(Increased distance to MD for

control group, better insurance for intervention group)

Inadequate power to detect

differences m hospitalization

No behavioral outcomes

Abbreviations EW = emergency ward, LOS = length of stay, MD = physlclan, MSW = medical social worker; RCT = randomized cllnlcal trial, RN = registered nurse

aL. Gordls and M Markowictz, “Evaluation of the Effectiveness of Comprehensive and Continuous Pediatric Care, ” PedlatrlCS 48:766, 1971.

bR s Kaplan, L B. Lave, and S Leinhardt, ‘

f The Eff!cacy of a Comprehensive Health Care Project An Emplncal Analysis, ” Am J Public Health 62:924-930, 1972

CG Moore and K, Frank, “comprehensive Health Services for Children’ An Explorato~ Study Of Benefit, ” pediatrics 51 17-21, 1973

dJ J Alperf, L S Robertson, J.K. Kosa, et al , “Dellvery of Health Care for Children: Report of an Experiment, ” Ped/atr/cs 57:917-930, 1976

eK D Rogers, R Ernst, I Shulman, et al , “Effectiveness of Aggresswe Followup on Navajo Infant Health and Medical Care Use, ” Pediatrics 53 ”721-725 1974

fM s August in, E, Stevens, and D Hicks, “An Evaluation of the Effect weness of a Children and Youth Project, ” Hea/th Serwces Report 88 ”942-946, 1973

gL Gordls, “Effectiveness of Comprehensive.Gare Programs In Preventing Rheumatic Fever,” N Eng J Med 289:331-335, 1973

hM Kle, n, K ROghmann, K WoodWard, et al , “The Impact of the Rochester Neighborhood Health Center on Hospltallzation of Children. 1968 to 1970,” Pedfatr/cs 51 ”633-639, 1973

IM E Brlscoe, D.L Hochstrasser, G W Somes, et al , “Followup Study of the Impact of a Rural Preventive Care Outreach Program on Children’s Health and Use of Medical Services. ” Am J Pub//c Health

70151.156, 1960.

jTh)s IS a generic problem of these evaluation studies but especially StrOng here

kln ecologlc studies ,ndlvidual experience ,s not directly measured, rather, such experience IS Inferred from measures of aggregate experience A problem with such studies Is that the lndlvlduals maY not

experience the exposures attributed to them by virtue of their residence or group membership

SOURCE” Office of Technology Assessment, 1988, based on a background paper by C J Homer, “Evaluation of the Evidence on the Effectiveness of Well-Child Care Serwces for Child ren, ” prepared for the

Office of Technology Assessment, U.S Congress, Washington, DC, April 1987
Author

lrwin and ConroyHughes i 1982a

Keller, 1983b

Table J-3.—Effectiveness of Well-Child Care as a Whole: Evaluations of Medicaid’s Early

Periodic Screening, Diagnosis, and Treatment (EPSDT) Program

Years

data Study

collected Study population design Sample size Intervention Outcome measures Results Comments

1973-80 S E Pennsylvania Before/after with 1,831 children Participation in EPSDT 1 Identification of an 1 No difference in 1 Results based on

EPSDT eligible >18 separate controls program abnormal condition crude rates speculate admo. at 1st screen,

screened at 2 yr

1979 Mlchlgan–population

eligible for EPSDT

entire year

Reis, et al , 1984C

1972-79

for each time requiring treatment

2 Number of treatable conditions

identified, standardized for number

of conditions tested

1 Repeated 1 16,000 random Participation in EPSDT 1 Referral rates

prevalence sample program 2 Costs for partlcl2 Cross section users 2 10,000 users, pants v nonparv nonusers 6,000 nonusers ticipants, with and

without administrative costs

Review of SIX EPSDT

demonstration/eval -

uation projects

2 When adjusted for

secular trend of inincreased identification rates,

rescreening was

associated with a

26% decrease

1 Decreased referral

rates with

Increased

screening

2 No consistent

change m costs

with Increased

numbers of

screenings

3. Participants cost

less than nonparticipants

justment

2 No specific information on importance of conditions

3 No individual

health status

measures

1 Same criticisms as

comments 2 and 3

above

2. Nonparticipants are

Iikely different than

participants (selection bias)–e.g.,

nonscreened Medicaid eligible may

have “spent

down’ to get onto

Medicaid roles

1 Great variability in

proportion of eligible population

screened (14-85%)

2 Variation in case

finding rates

(6-18%)

3 Although 50-80%

of those identified

with problems were

treated, only

7-18% were

judged to achieve

maximum benefit

4 Large proportion of

those diagnosed

were not previously

Identified

ap, ~, Imln and R. Conroy-Hughes, ‘

6 EPSDT Impact on Health Status: Estimates Based on Secondary Analysts of Administratively Generated Data, ” Medica/ Care 20216-234, 1982.

bw Keller ‘study of Selected outcomes of the Early and Periodic Screening, Diagnosis, and Treatment pro9ram in Michigan, “ Pub/ic Hea/th Reports 98:1 10-119, 1983.

CJ s Reis,’ S R Pliska, and E Hughes, “A Synopsis of Federal-State Sponsored Preventive Child Health,” J. CorrrrrrurrIty Health 9:222-239, 1964

SOURCE: Office of Technology Assessment, 1988, based on a background paper by C,J, Homer, “Evaluation of the Ewdence on the Effectiveness of Well-Child Care Serwces for Children,” prepared for the

Office of Technology Assessment, U S Congress, Washington, DC. April 1987.
Table J-4.—Effectiveness of Well-Child Care as a Whole: Comparisons of Health Outcomes in Alternative Health Delivery and Insurance Systems

Years

data

Author collected Study population Study design

Valdez 1986a

1974-82 R C T Random sample families

from six communities

some exclusions

0-11 yr

Kessner et al 1974b

1970-71 Cross sectional Washington, DC

Random sample from

specific neighborhoods, predominantly

black, 6 me-l 1 yr

Dutton and Silber, 1970-71 Reanalyses of Washington DC

1980C

Kessner data Random sample from

specific neighborhoods predominantly

black, 6 mo-11 yr

Sample size Intervention Outcome measures

1 844 children Differing levels of health Physilologlc function

Insurance anemia, middle ear

fluid; hearing loss,

visual acuity

Physical health limitations in daily activity

Mental and general

health perception

1,436 families SiX different types of ‘ Tracer” condtlons2,780 children providers, including 1. Middle ear infection/

both prepaid and fee- hearing loss

for service 2 Iron deficiency

anemia

3 Visual disorders

1,436 families Different types of ‘Tracer’ conditions–

2,780 children prowders 1. Middle ear infection/

hearing loss

2 Iron deficiency

anemia

3 Visual disorders

1

2

3

1

2

3

Results

Overall no significant

difference in health

measures with differing

levels of insurance

Decreased utilization associated with cost

sharing–preventwe

services decreased by

comparable amount to

other services

For poor children who

were anemic at outset

of study 8% of those

in free care were anemic by the end of the

study, compared to

22% of those in cost

sharing

Provider type had no

significant influence on

health status measures

after controlling for

socioeconomic status

Tests often not performed as often as

recommended

Abnormal results often

not followed with

treatment

Trend toward lower

health status for users

of solo practitioners

relative to users of

prepaid or OPD care

Lower satisfaction with

OPD use

Abbrewatlons OPD – outpatient delwery cllnlc, FtCT = randomized cllntcal trial

—

1.

2

3

4

1

2

3

4

Comments

Sample attrition 30%

Plans not representative

of those generally avail

able to the poor

Inadequate power for

examination of role limitations and for subgroup analyses

Growth and developmental outcomes not

reported

Generalizability limited

with 1 city, black popuIation, large numbers of

inner-city solo practitioners

Question of adequate

controlling for socioeconomic status

Question regarding

aggregation of provider

types

Implications for preventive care uncertain, if

valid, implication iS that

although prepaid programs provided more

preventive care, outcomes no different

1 Question regarding

generalizability

2 Aggregate effect very

small

3 Question appropriateness of linking OPD and

prepaid care schemes —

aR o B Valdez The Effects of Cost Shar~ng on the f-/ea/th of Children, R-3270HHS (Santa Monica, CA Rand COrP , 19@

bD” M“ Kes~ner’ c K snow and J Singer, AssessmentOfMed/ca/care for Chl/dren (Washington, DC: National Academy of Sclenc@s, 1974)

CD B, Dutton and R S Sllber, “Children’s Health Outcomes In SIX Different Ambulatory Care Dellvery System s,” Medical Care 18693-714, 1980

SOURCE Off Ice of Technology Assessment, 1988, based on a background paper by C J Homer, “Evaluation of the Evidence on the Effectiveness of Well-Child Care Serwces for Chlldr@n, ” prepared for the

Office of Technology Assessment, U S Congress, Washington, DC, April 1987
Table J-5.—Effectiveness of Well-Child Care as a Whole: Studies of the Effects of Well. Child Care on Developmental Outcomes

Years

data

Author collected Study population Study design Sample size Intervention Outcome measures Results

Cullen, 1976a

1964-73 Rural W Australia

other criteria not

stated

Gutelius, et al., 1977b 1965-76 Urban Washington,

(enrolled DC, primigravid 15-

1965-69 18-year-old mothers

with 6 with early prenatal

year care, IQ >70; no

followup) neonatal problems

. .

Stratified, men Iul families

randomized 122 children each every 3 mo. m 1st

(RCT) group yr; then every 6 mo,

for 4 yr, emphasis

on gentleness, positive outlook

RCT 47 experimental Pediatrician and nurse

48 control well-child visits in

motor coach, 1 hour

each; additional

nurse visits-total

18/12/8 1st 3 yr,

Group counseling,

medicinal iron, cognitive stimulation

program

Chamberlain and 1976-79 Rochester, primiparous Cohort 371 total

Szumowski. 1980C

mother recruited from

pediatricians

Casey and Whitt, 1977-78 North Carolina,

1980d

primiparous

mothers, no medical

complications, no

Identified source of

pediatric care

Various levels and

methods of extensive

parent education m

pediatrician offices

(e.g., discussions,

handouts, shale

presentations)

RCT (randomized 15 experimental Counseling emphasizafter stratifi- 17 control (of 59 ing affective interaccation) eligible) tion; control of

well-child care by

same MD (all intervention by one physician)

1. Behavior symptoms

2 Family relations

3 Readiness for work

4 Basic Iearning

ability

5 Early school

personality

6. Stan-Binet vocab

7 Describe a picture

8. Spontaneous speech

9. Draw a man

Bayley

Stanford-Binet

WISC-R

Behavior profile

School readiness

Maternal knowledge,

attitudes, childrearing style

Child” behavior, development

8 scales maternalInfant interaction;

Bayley, object permanence and vocal

Imitation scales

Fewer fears, more

school lateness,

many behaviors with

no differences, boys

m intervention

groups generally became worse m

school performance

and behavior; no

effect for girls

Cognitive: decreasing

differences after age

3

Behavioral: improved

social and self-confidence scores at age

3, fewer behavior

problems age 5 on;

improved school

completion by expectant mothers as

program evolved

Increased knowledge

with increased

teaching; no effect

on development, inincreased reported behavior problems,

small but significant

correlation teaching

and positive interaction

All scales favored intervention; significant differences

4/8 No significant

difference Bayley;

vocal imitation favored Intervention

p<0.1

Comments

Sample uncertain

Generalizability uncertain

Intervention not standardized

Importance of outcomes unclear

Plausibility of sex interaction Iimited

Generalizability Iimited

due to nature of

study population and

intensity of program,

outcome assessment

not blinded; intervention unstandardized; late attrition in

control group of better Performers

Middle class population, all providers in

one practice given

average rating

(measurement error); attrition to lower socioeconomic

status families,

regression technique

may have masked

study effect by including intervening

variable; question

selection bias

Short followup; outcome measures of

uncertain significance; power

limited; generalizability Iimited by

population and

perhaps nature of

intervention (unique

to provider?)

Abbreviations: RCT = randomized clinical trial; WISC-R = Wechsler intelligence scale for children

aK,J Cullen, “A six-year Controlled Trial of Prevention of Children’s Behavior Disorders, ” J. Pediatrics 88:662%66, 1976

bM, F, Gutelius, A,D Kirsch, s, MacDonald, et al., “controlled Study of Child Health Supervision” Behavioral Results, ” ~edfatrics GO:z~-sOd, 1977.

CR.w, charnberlirl and B.A. Szumowski, “A Followup Study of Parent Education in Pediatric Office Practices: Impact at Age Two and a Half,” Am J. Public Health 70:1 160-1188, 1980

dp, H, Casey and J.K. Whitt, ‘(Effect of the Pediatrician on the Mother-Infant Relationship,” Pediatrics 65:81 5-820, 1980

SOURCE: Office of Technology Assessment, 1988, based on a background paper by C.J. Homer, “Evaluation of the Evidence on the Effectiveness of Well-Child Care Services for Child ren, ” prepared for the

Office of Technology Assessment, U.S Congress, Washington, DC, April 1987
Table J-6.—Studies of the Effectiveness of the

Years

data Method of

Author collected Sample data collection Validation

General Physical Examination in Well-Child Care

Reliability

assessment

Utility Definition

assessment of exam Yield Comments

Infant:

Anderson, 1970a

Parents unaware of

abnormalities

needing prescription 62% of

time Study of

limited value

1969 44% practicing

Connecticut

pediatricians,

100 consecutive

well-child exams

Physician report of

abnormality

None None None Physical exam or

"routine" lab

tests only

11.4% of exams

resulted in abnormality, 1.9%

in significant abnormality, 80%

discovered by 6

mo.

Preschool:

O’Connell and Friesen

1976b

1970 382 born m Mayo

clinic, underwent

preschool exam

and entered KG

1970

Chart review None None None Preschool exam

which included

history, physical

exam, watch

hearing test, and

Snellen vision

test

School-based

screening tests

physician's exam

included weight,

height, vision,

hearing blood

3 1‘Yo of exams

resulted in previously undetected

abnormalities

Biases in sample

selection

Abnormalities detected by exam

and not screened

for are not discussed

33% of children

had abnormalities, 91% of

these detected

by screening,

30% detected by

Welch and Kesler,

1982C

1978 1 158 entering

KG Roanoke

Virginia 1977

Comparison of

school screening

program with

written physician

preschool report

Study in one sense Not clearly speciIS validation of fied screeners

prior physician underwent

exam, screening training

positive findings

"confirmed

None

pressure, and

caries

Patient history as

well as a physical exam

physician exam

School aged:

Yankauer and Lawrence, 1952-53 1,056 1st grade Examined by 1 MD, Limited–if in None

1955dchildren from vision, hearing, doubt a second

representative and dental prob- oplmon was

sample of Iems not included sought

schools

163 conditions initially identified,

99 still present

in grade 4, most

new conditions

also present

grade 4, ENT

and emotional

problems most

Iikely to Improve,

emotional

problems least

Iikely to be in

care

21% of children

had abnormality,

78% under care

and 12% more

known,

If preschool family

MD exam, condition more Iikely

under care

Relies on adequacy

of care by an

outside (family)

physician

Yankauer and Lawrence 1952-56 617 of above re- Same as Yankauer Same as Yankauer None

1956e

maining for 3 and Lawrence and Lawrence,

years and 284 1955d

1955d

remaining 1 or 2

years

Same as Yankauer

and Lawrence,

1955d

14% develop new

condition.

primarily emotional and ENT,

50% under care

before school

exam

1 /251 exams

resulted m a

condition diag

nosed not already under

treatment

Same as Yankauer

and Lawrence

1955d
Table J-6.—Studies of the Effectiveness of the General Physical Examination in Well-Child Care-Continued

Years

data Method of Reliability Utility Definition

data collection Validation assessment assessment of exam Yield collected Sample Comments Author .

Yankauer, et al , 1957f 1952-56 617 of above remaining for 3

years and 284

remaining 1 or 2

years

Grant, et al , 19739

1967-70 6,058 students in

El Paso schools

undergoing annual screening.

age 5-18 yr

and Lawrence,

1955d 195 5

d 

Paramedic screen- None

ing tests, physician physical

exam, rashes,

acute illnessesi

emotional problems excluded

Kohler 1977h

1969-72 649 children age 7 Author examined all None

in one town in students

Sweden

DeAngelis, et al., 1980-81 12,997 rural Aides administered None

1983’ students, little screening tests

access to medi- Nurse practitioncal care, nurse er did physical

practioners exam

None Same as Yankauer Same as Yankauer

and Lawrence and Lawrence

1955d

1955d

None

None

None

None (authors Not specified

judged a detected

condition worthwhile even if referral resulted in

a ‘‘diagnosis” of

no significance.

such as functional murmur)

None Physical exam is

included growth

parameters and

urinalysis

None Not specified

See “Utility as- No examination of

sessment" ‘‘Iabehng’

13 4% had abnor- 37% of all abnormality detected– malities were

9.5% by screen- due to inadeing, 3.9% by quate vision

exam

15% had abnormality detected, half

were vision problems, half previously known

physical examination detected

functionally important abnormality in 6.5%

 34% of students

undergoing

physical examination had a

problem identified, only 17%

previously known

None

Little overlap in

conditions,

acute, self-imited problems in

eluded, no utlldy

measure

Abbreviations ENT = ear, nose, and throat KG= kindergarten. MD = physician

aF,P Ander$on, “Eva[uat\on of the Routine phy$ical Examination of Infants in the First Year of Life!” ~e@a~r/cS 45”950-%4 1970

bE J O’Connell and C.D Frie$en, “The Preschool Phys!cal Examination” C~irric@l Pediaklc$ 15:930-931, 1976

CN” M Welch and RW Ke$ler, ,,The value of the pf@schOO[ Examination in Screening for Health Problems,” J Pedlafric$ 100:232-234, 1982.

dA’ ~an~auer and RA Lawrence, S,A Study of periodic School Medical ExammatiOnS-1. Methodology and initial finding% “ Am J. Public Health 4571-78, 1955

eA’ .fankauer and R Lawrence, ‘A Study of Periodic School Medical Examinations —11, The Annual Increment of New ‘Defects’,” Am. J Public Health 55:1553-1562t 1956.

fA, Yankauer, R Lawrence, and L. Ba{lou, “A Study of PeriodiC School Medical Examlnatlons —Ill The RemediabilitY of Certain Categories of ‘Def@cts”,” Am J Public Health 47 1421-142% 195?

9W.W Grant, R.G Fearnow, L.M Hebeffson, et al., “Health Screenin9 in School-Age Children,” Am. J. Dis. Child. 125 ”520522, 1973.

hL, Kohler, ‘rphyslcal Mass Examinations in the School Health service,” Acfa Paediafr. Scand 66:307-310, 1977.

‘C. DeAngel Is, B. Berman, D. Oda, et al., “Comparative Values of School Physical Examinations and Mass Screenin9 Tests,’(

J. Ped!atficS 102:477 -48~, 1983

SOURCE Office of Techno109Y Assessment, 198S. based on a background paPer by C.J. Homer, “Evaluation of the Evidence on the Effectiveness of Wel~-Child Care S@~lces for Children.” prepared for the

Office of Technology Assessment, U.S. Congress, Washin9tOnl DC, APrll 1987
Table J.7.—Studies of the Predictive Validity of the Denver

Years

data

Author collected

Camp, et al 1977a - 1969-72

Cadman et al., 1987b

Sturner, et al., 1985C

1980-84

1978-80

Sample characteristics—

Low-income Denver residents using a

Neighborhood Health Center, took

DDST, If abnormal, asked back, if normal, some asked back, of these, those

over 8 years old before 9/73 and still

living in Denver in the public schools

were included, 493 initially came back,

92 met age criteria; followup on 65 of

92

All children registering for normal kindergarten m three or four regions of

Niagara, Ontario, children randomized to

receive DDST with counseling, DDST

without counseling, and no DDST, all

abnormals and random sample of others

underwent further testing

All children registering for kindergarten in

Person County, North Carolina, screened

with DDST-S; followup testing on

differing proportions of abnormals

(100%), questionables (50%),

and normals (10%)

Outcome measures

Developmental Screening Test (DDST)

—

Prevalence of school failure Sensitivity—

Special class or repeat achievement test 57% with either la below 80 or Iearning 78%

>1.5 years behind problem

Significant teacher rated behavior problem

Diagnosis of hyperactivity IQ below 80

Teacher and parent reported Iearning 9% not in regular 2nd grade class 6%

problems

Child not in regular class

Parental worry

WRAT

WISC-R

Child Well Being Questionnaire

Special class or repeat 27% not regular class or < 20th 57% stage

CAT-R < 20th percentile percentile on CAT-R 26%-2 stage

Specificity

6 0 %

99%

87%-1 stage

94%-2 stage

Abbrevlatlons WISCR = Wechsler Intelligence scale for children, WRAT – Wide Range Achievement Test

aB w camp, w J van I)cmrrllnckt W K Frankenburg, et al ~ “Preschool Developmental Testing In Pred!ctlon of School Problems, ” Cl(nical F’edjatrics 16:257-263, 1977

bD Cadman, L w Chambers, s D Walter, et al,, ‘f Evacuation of publlc Health preschool Child Developmental screening: The process and Outcomes of a Community PrOCJram,” Am. ./ ~ubllc f+eaith i’7:45-51, 1987

CR A Stu ~ner J ,A Green, and S,G Funk, ,,preschool Denver Developmental Screening Test as a Predictor of Later School Problems, ” ./. Pediatrics 107:615-621, 1985

SOURCE Off Ice of Technology Assessment, 1988, based on a background paper by C.J Homer, “Evaluation of the Evidence on the Effectiveness of Well.Child Care Services for Children, ” prepared for the

Office of Technology Assessment, U.S. Congress, Washington, DC, April 1987
Table J-8.—Studies of the Effectiveness of Anticipatory Guidance on Child Safety Restraint Use

, Author Years Site/pratice style Sample size Allocation method Intervention Outcome assessment Results Comments

Bass and Wilson, 1962-63 Pittsburgh/private

1964a

practice

1,423 1. Control group =

users one practice

2 Different experimental groups = users

another practice at

different times

16 experimental (Quasi-random (every

19 control other infant born)

1.

2

3

1

1

2

3.

1.

2.

3.

4.

5.

1

2.

Letter by MD

Letter by MD +

counseling

Letter by safety

organization

Counseling by MD +

pamphlet at prenatal

Visit; control = no education

Informational material

only

Informational material +

film presentation

Informational material,

film presentation, and

rehearsal of car seat

use, control = no information (postpartum)

No reformation

Display

Display + pamphlet

Display + pamphlet +

nurse counseling

Display + pamphlet +

MD counseling

Pamphlet + verbal information

Pamphlet + verbal +

slide/tape, control = no

Maternal report of seat- 19.6% no Information, Concerns regarding

biases m allocation and

assessment

belt Installation, by

phone

19.1% organization letter,

15 3% MD letter, 43% MD

letter + counseling

Kanthor, 1976b

1974-75 Rochester/prepaid

health plan

Maternal report, occasionally verified42% use no Information,

69% information (p=0.21)

Small sample size bias

m assessment no significant difference

Allen and 1974-75 Seattle/prepaid health

Bergman, 1976C

plan

202 of 500 Volunteers for nonconeligible current intervention

groups

Maternal report– questionnaire1. 37% no Information

2. 54% Information only

3. 71% Information + film

only

Selection bias assessment bias not necessarily

relevant to office

practice

4

At

%

2)

5)

60% information + film

+ rehearsal

Scherz, 1976d

500 Random allocation Maternal report-questionnaire at 8 weeks

and 9-12 mo.

1970-74 Tacoma/military wellchild care8 weeks/12 months,

safe = 1) 9/77

12/74 3) 8/75 4) 22/81

13/88

Bias in assessment due

to military population

Miller and Pless,

1977e

1975-76 Rochester/pediatric

group practice

654 (age 0-17) Randomized Maternal questionnaire,

rough validation with

direct observation

No significant differences

between control m either

intervention group

Power not a ‘‘physlclan’ intervention

per se

education

Reisinger and

Williams, 1978’

1976-77 PNtsburgh/in-hosptal

program

1,107 Consecutive time intervals (nonconcurrent

controls)

Control = no education

1 Literature only

2 Literature + health

educator

3. Literature + free car

seat

Direct observation at

hospital discharge and

2 mo. followup

Very low use at time of

hospital discharge, no

study effect, gradient from

control to free seat with use

at 2 mo.,i.e., 26%/31%/

36%/41 %. Only free group

had statistically significant

difference from control

Significant difference at 2

mo. (50 v 29%); no differRates may be inflated

compared to general

population m that more

educated parents are

both more likely to use

seat belts and to come

for followup

Reosomger, et al ,

1981g

1978-79 Pittsburgh/private

practice

269 Nonconcurrent intervention and control periods

Control = no information

Study = education by

Direct observation at 1,

2, 4, 9, 15 mo.

Attrition ranged from

10-23%

pediatrician with discussion, pamphlet, and demon

stration

ence from 4 mo. thereafter

Abbreviation: MD = physician. eJ ,R, Miller and I,B, pless, “child Automobile Restraints Evaluation of Health Education, ” ~edlatrics

aL,,!J, Bass and T R, ~il~on, ,, The pediatrician’s Influence in private practice Measured by a Controlled 59:907-911, 1977.

fK,S, Reisinger and A.F. Williams, Seat Belt Study,” Pediatrics 33:700-704, 1964. “Evaluation of Programs Designed To Increase the Protection of lnbH,A, K~thor, ,, Car Safety for Infants: Effectweness of Prenatal Counseling,” ~edlatfks 561SP0-W 1976 fants in Cars,” Pediatrics 62260-287, 1978.

cD. B, Allen and A.B. Bergman, “Social Learning Approaches to Health Education: Utilization of Infant gK.S. Reisinger, A.F Williams, J.K. Wells, et al , ‘

r Effects of Pediatricians’ Counseling on Infant Restraint

Auto Restraint Devices, ” Pediatrics 58:323-328, 1976, Use, ” Pediatrics 67 ”201-206, 1981

dR,G, Scherz, ,, Restraint Systems for the prevention of lnju~ to Children in Automobile Accidents,”

Am. J. Public Health 68:451-456, 1976.

SOURCE: Office of Technology Assessment, 1968, based on a background paper by C.J. Homer, “Evaluation of the Evidence on the Effectiveness of Well-Child Care Serwces for Children, ” prepared for the

Office of Technology Assessment, U.S. Congress, Washington, DC, April 1987.
Table J-9.—Recent Economic Evaluations of Childhood Vaccination Programsa

Type of

Author vaccine

Population

studied

Costs and benefits

considered

Direct medical costs and

benefits

Alternative compared

1 Hib vaccination at 18

mo. v. no vaccination

Findings —

Critical assumptions Comments

Cochi, et al 1985a

U S population

1-2 yrs old

Net benefit in direct short- Cost of vaccine = $3/dose

No additional administrative cost because in conjunction with 18-mo DTP

visit

80% coverage

75% efficacy

Sensitivity analysis performed for alternative

strategies, varied efficacy,

coverage incidence and

cost of vaccine, no discounting of acute case

costs saved Long-term

costs discounted at 5%

and long-term savings =

$307 million

Net benefit in direct shortand long-term savings =

$1 1 million

Cost includes $10 administration fee, since

visit is not in conjunction

with scheduled DTP visit

80% coverage

90% efficacy

2 Hib vaccinationlnat!on at 24

mo. v no vaccination

Hay and Daum, 1987b

Hib

White, et al 1985C MMR

Hib vaccine at 24 mo v.

no vaccination

1984 U S birth COhort (from O-5 yr)Direct and Indirect costs

and benefits including an

economic valuation of Iife

Net savings of $648

million

60% vaccine coverage

Vaccine cost =$8. 13/dose

Office visit cost =$20

70% efficacy

Many other strategies

were considered as well,

including rifampin prophylaxis, sensitivity analysis

was performed

Based on actual and estimated data for 1983MMR vaccination v single

antigen vaccination v no

vaccination

U S population (examined actual 1983

data)

Direct and Indirect costs

and benefits

Combined vaccine (MMR)

benefit-cost ratio =

134 1

Single antigen vaccine

benefit-cost ratios

measles = 11.91

rubella = 77 1

mumps =67 1

Savings due to use of

combined rather than single antigen vaccine =

$60 million

Net savings for the

20-year period (1963-82)

= $51 billion

Vaccine costs

office visit = $15.00

measles = $42 6

rubella == $476

mumps = $5.5 7

MMR = $113 0

Discount rate = 10%

Bloch, et al , 1985d

Preblud, et al , 1985e

Measles Measles vaccination program, 1963-82 v no vaccination program, 1963-82

U S population Direct and indirect costs

and benefits

Unspecified Comprehensive review of

benefits due to measles

vaccination from 1963-82,

based on previously published studies

Sensitivity analysis performed for best- and

worst-case scenarios

Home care costs accounted

for 95% of the diseaserelated costs

Varicella

(chickenpox)

Varicella vaccination in

conjunction with MMR (1

dose at 15 mo. ) v no

vaccination

Hypothetical birth

cohort of 3,5 million

(a size approximating that of the

U S ) normal individuals followed

from birth to their

30th birthday

Direct medical and home

care costs (those associated with lost work time

by someone other than the

patient)

Overall benefit-cost ratio

=69 1

Net savings of $262

million

No administration cost because administered in

conjunction with MMR

Coverage = 90%

Efficacy = 90%

No herd Immunity

Discount rate = 5%
Table J-9.— Recent Economic Evaluations of Childhood Vaccination Programsa—Continued

Population Costs and benefits

Author vaccine Alternate compared studied considered Findings Critical assumptions Comments

90% coverage (5 doses)

80% efficacy

Vaccine cost=$0.03/dose

No administrative cost because administered m

conjunction with DT

Discount rate = 5%

Sensitivity analysis performed for the following

1 assuming no herd immunity

2 assuming all children

with convulsion, collapse, or high-pitched

cry following vaccination seek medical care

The benefit-cost ratio

(reduction in disease costs

divided by program costs)

Is 11 1 1

Hinman and Koplan, f

Pertussis

1984

Pertussis vaccination in

conjunction with DT vaccines (5 doses, 0-6 yr) v

no vaccination (DT vaccine

only)

Hypothetical cohort

of 1 million children, based on

U K. incidence

rates (because less

underreporting than

U. S.) and extrapolated to U.S. population

Direct medical costs and

benefits

U S. population Direct and redirect

benefits and costs

Net benefit achieved

through immunization was

$1 3 billion over 10-yr

period

Costs of production, distribution, administration, and

promotion of vaccine is

$3 00/dose

Basis for monetary estimate of direct and indirect

benefits not given

Costs and benefits not

discounted

Some benefits and costs

not discounted

Direct costs for each year

estimated m current

dollars

Costs not discounted over

time

White and Axnick, Measles

1975 g p

Measles vaccination as

implemented 1963-72 v

no measles vaccine

Physician office visit

cost= $73/day for

measles encephalitis;

=$40/day for hospitalized

measles cases

Axnick, et al 1969h p Measles Measles vaccination as im- U.S. population

plemented 1963-68 v. no

vaccination

Direct and indirect costs

and benefits due to vaccination

National net direct benefits

$200 million, net direct

and indirect benefits m

period 1963-68 were $531

million

Direct costs of immunization and therapy and indirect costs of lost work

time for mothers

Over a 12-yr period of

vaccinations, net direct

benefits are positive (at

1681 90 Austrian Shillings

per child)

Cumulative effect of MMR

program since 1966 has

saved the State $14,1

million

Vaccine acceptance iS

100%; 20% of mothers

are employed; 5 days

mothers’ work time lost

for measles and mumps

Ambrosch and Measles and

Wiedermann, 19791 p mumps

Measles and mumps vac- Austrian population

cination of 1-yr-olds v no

vaccination

Unknown, not well

described

Basis for monetary estimates not given; costs

over time not discounted

MMR vaccination program Massachusetts

run by State v. no population

program

Direct costs of vaccinations and medical care associated with the disease

Massachusetts MMR

Department of Health,

1980 ] p

Ekblom, et al , 1978k p Measles Measles vaccination of all Population of Basis for monetary esti1-yr-olds v. no vaccination Finland

Cumulative discounted net

direct and indirect benefits

1975-99

Total benefits outweigh total costs by third year of

study, ratio of net benefit

to cost Is 3:1-4:1

Discount rate = 9%

mates not given

Direct and Indirect costs

and benefits

Vaccination saves approximately $5.4 million per

million vaccines

Discount rate = 5%

Cost of mumps vaccination

= $100

Vaccination program is

that recommended by

American Academy of

Pediatrics (vaccinations

1-yr-olds)

Koplan and Preblud, Mumps

19821 p

Mumps vaccine m con- U S population

junction with measles and

rubella v. measles and

rubella vaccine only of
Schoenbaum, et al

197 6

m p

Farber and Finkelstein,

197 9

n p

Koplan, et al , 1979° p

Rubella

Rubella

Pertussis

Rubella vaccination of

2-yr-old children as part

of measles and mumps

vaccine v vaccination of

6-yr-old children with

monovalent vaccine v

vaccination of 12-yr-old

females with monovalent

vaccine

Premarital testing for

rubella antibodies m area

with a childhood MMR

vaccination program v

childhood rubella vaccination only

Pertussis vaccination in

conjunction with diphtheria

and tetanus (DTP) vaccines

v. DT vaccine only

U S population

U S population

U S infant

population

Direct costs of vaccination

v direct and indirect

costs of congenital rubella

syndrome

Net direct and Indirect

costs and benefits

Direct medical costs per

pertussis case prevented

and life saved

Ratio of benefit to cost IS

25:1 for 12-yr-old girls,

91 for 6-yr-old children.

and 231 for 2-yr-old

children

Testing program would not

have positive net benefits

unless compliance with

vaccination iS at least

37% and test cost less

than $55

Net direct costs of medical

care are negative (1.e

pertussis vaccine iS costsaving); pertussis vaccine

saves 56 deaths per 1

million vaccines

Compliance for all ages in

80%

No 12-yr-old girls would

be pregnant at time of

vaccination

Without testing program,

incidence of congenital

rubella syndrome would

be same as current experience

90% Immunization coverage (acceptance); 70%

vacine efficacy; serious

vaccine complications:

convulsions, 1 m 3,500,

encephalitis, 1 m 50,000;

case fatality from these

complications same as for

pertussis

Compliance in infants iS

likely to be higher than

Compliance in 12-yr-olds

Herd Immunity not considered

Sensitivity analysis performed for different assumptions about under

reporting of rubella incidence

Vaccination program iS

that recommended by

American Academy of

Pediatrics

Vaccine administration

costs are minimal because

pertussis can be combined

with DT innoculations

Abbreviations DT = dlohther!a. tetanus Hlb = FfaemoD/r~lus /n f/uerrzae twre b, MMR = measles, mumms, and rubella

as L, Cochl, c v Broome, and A.W. H ightower, “lmmun\zatlon of U.S. Child’ren With Haerrrophllus /rrf/uerrzae Type b Polysaccharide Vaccine A Cost.Effectiveness Model of Strategy Assessment,” J A M A.

2534):521-529, 1985.

bJ W, Hay and R S, Daum, CCcost Beneftt Analysis of TWO Strategies for Prevention of HaemOPfrlluS Iflfluefrzae Type b Infection “ Ped/atr/cs 80(3):319-330, 1987.

ccc White, J P Koplan, and W.A. Orensteln, “Benefits, Risks and Costs of Immunization for Measles, Mumps and Rubella, ” Am J. Pu~lIc Health 75(7)739-744, 1985

dA B, Bloch, WA, Orenstein, H.C. Stetler, et al., “Health Impact of Measles Vacclnatlon in the United States,” Pediatrics 76(4)524-532, 1985.

es R preblud, W A. Orenstein, J.P. Koplan, et al , “A Benefit-Cost Analysis of a Childhood Vancella Vaccination Programmed, ” Postgraduate Medical J 61(suppl. 4) ”17-22, 1985

fA,’R, I-tinman and J.P. Koplan, “Pertussls and Pertussis Vaccine: Reanalysis of Benefits, Risks, and Costs, ” J.A MA. 251(23):3109-31 13, 1984

gJ. Witte and N Axnick, “The Beneftts From 10 Years of Measles Immunization In the United States, ” Public Healtfr Reports 90(3)205-207, May-June 1975

hN, Axnick, s Shaven, and J. Witte, “Benefits Due to Immunization Against Measles,” F’ub/ic Health Reports 84(8):673-680, August 1969

i F Am brosch, and G. Wiederman, “Costs and Benefits of Measles and Mumps Immunization in Austria, ” BUII. WHO 57(4):6254329, 1979.

[Massachusetts Depaflment of Health, “Report on the Measles, Mumps, and Rubella Immunization Programs,” Boston, MA, March 1980

kM Ekblom, 0, Elo, and p, Niemela, ,, Costs and Benefits of Measles Vaccination in Finland, ” Scandjnavjan J. SOC, Med. 6(3).1 11-115, 1978.

IJ ~, Koplan and S R preblud, “A Benefit-Cost Analysis of Mumps Vaccine,” Am. J. Dis. Cfrild. 136:362-364, April 1982

m“s.c, Schoenbaum, J .N Hyde, Jr., L Bartoshevsky, et al I “Benefit-Cost Analysis of Rubella Vaccination Policy, ” N Errg J. Med 294(6) 306-310, 1976.

‘M. Farber and S. Finkelstein, “A Cost-Benefit Analysis of a Mandatory Premarital Rubella-Antibody Screening Program,” N. Eng. J Med 300(15):856-859, 1979

OJ p Koplan, S.C Schoenbaum, M C. Weinstein, et al., “Pertussis Vaccine: An Analysis of Benefits, Risks and Costs, ” N. Errg. J. Med 301(1 7).906-911, 1979

pBased on J.L. Wagner, “The Economic Evaluation of Medicines: A Review of the Literature, ” prepared for the Pharmaceutical Manufacturers’ Association, Washington, DC. August 1982

qlhe Weisbrod study of the net benefits of medical research on poliomyelitis (B.A. Weisbrod, “Costs and Benefits of Medical Research: A Case Study of Poliomyelitis, ” J Po/if/ca/ Economy 79(3):527-544,

1971 ) was not included because it does not address immunization policy per se

‘The term “direct costs and benef!ts” refers to medical costs Incurred or averted. The term “Indirect costs or benefits” refers to the economic value of lost productivity incurred or averted

SOURCE Off Ice of Technology Assessment, 1988, adapted In part from J.L. Wagner, “The Economic Evaluation of Medlclnes A Review of the Literature, ”

soclatlon, Washington, DC, August 1982

prepared for the Pharmaceutical Manufacturers’ As.
Appendix K

Current National Data Sources

on Accidental Injuries

As noted in chapter 7, there are five major national

sources of accidental injury data:

1. death certificates,

2. hospital discharge abstracts,

3. hospital emergency room reports,

4. national health survey data, and

5. traffic accident data.

These sources, along with their advantages and disadvantages are described briefly below.

Death Certificates

Death certificates include information on the cause

of death and thus can yield injury fatality statistics.

Because States are required to report all deaths to the

Centers for Disease Control, this system presumably

includes all accidental deaths in the United States. Fatality statistics are compiled and published by the National Center for Health Statistics (NCHS).

Accident fatality statistics have four major drawbacks. First, such statistics obviously include only

deaths; since most specific types of accidental injury

lead to only a few childhood deaths, changes in fatality statistics are generally useful for monitoring only

large-scale, national changes in accident fatalities. Second, accident fatality statistics may overstate accidental injury fatalities if some nonaccidental injuries (e.g.,

child abuse, suicide) are incorrectly reported as accidental (e.g., fall down stairs, accidental gun wound).

Or conversely, fatality statistics may understate accidental deaths if there is incomplete reporting of all

deaths. Third, these statistics are not detailed enough

to be useful in analyzing accident fatality trends in

great detail, because the fatalities are summarized

according to the injury groupings of the International

Classification of Diseases (see below). Fourth, the compilation of national fatality statistics is time-consuming; thus, for example, the most recent statistics available in 1987 are from 1984. Despite their drawbacks,

however, accident fatality statistics are a very useful

way of monitoring overall national progress in accident prevention.

Hospital Discharge Abstracts

Hospital discharge abstracts summarize essential information on patients admitted to the hospital, including numerical codes representing patient diagnoses,

256

Various organizations, such as the American Hospital Association and NCHS, use these abstracts to compile health statistics.

The available diagnostic codes, listed in the International Classification of Diseases, include a special

subset of codes for the cause of an injury. The codes

in this subset are prefixed by the letter “E”. Thus, the

inclusion of the appropriate “E” code, when applicable, on discharge abstracts could lead to a very large

national database of information on injuries serious

enough to cause hospitalization. Such a database could

also be used as a basis for in-depth studies of certain

geographical areas, injury costs, or trends in serious

injury.

Unfortunately, few hospitals routinely include “E”

codes on their discharge summaries (the information

sheets used as the basis for the discharge abstracts).

Health officials in Massachusetts report that in that

State, only about one-half of hospitals include the

codes (189). Furthermore, the abstracting services commonly used by hospitals often drop these codes on the

final abstract even when the codes are included on the

summaries, because there is room on the form for only

a limited number of codes and the “E” codes have no

effect on hospital reimbursement for patient care. Consequently, only about one-fourth of hospital discharge

abstracts include information on the cause of injury

when applicable. And, even when the “E” code is included, it may be inaccurate or insufficiently specific

where the codes themselves are ambiguous or include

large categories of injuries. As a result, hospital discharge abstracts offer great potential for extensive injury information but are not useful as they now exist

except where special provisions are made in local

studies to change these practices.

Hospital Emergency Room Reports

The Consumer Product Safety Commission (CPSC)

operates the National Electronic Injury Surveillance

System (NEISS), under which a sample of 62 hospital

emergency rooms across the country report detailed

information regarding injuries associated with products under CPSC’s jurisdiction (414). Rather than

reporting “E” codes that designate causes of injuries,

participating hospitals report codes for particular products (e. g., bicycles). NEISS provides timely data on

accidental injuries and is capable of detecting national
Appendix K—Current National Data Sources on Accidental Injuries ● 257

—

trends (e.g., the increase in the number of injuries associated with all-terrain vehicles) in time for direct action. The data supplied by participating hospitals, by

providing the information necessary for followup telephone interviews and hospital records review, also

serve as a basis for more in-depth studies of possible

issues. A major benefit is that all relevant injuries

treated in emergency rooms—not just the very serious injuries resulting in hospitalization or death—are

reported,

NEISS has three major drawbacks. First, the system

is very expensive to maintain (414). Second, it does

not include all accidental injuries (e. g., CPSC has no

jurisdiction over firearms or motor vehicles, so injuries associated with these products are not reported).

Third, the small hospital sample does not enable CPSC

to estimate national injury rates associated with particular products when the number of injuries is relatively small; nor is the sample useful for detecting

regional differences in injury rates or for following regional trends.

National Health Interview Survey

The National Health Interview Survey (NHIS), conducted annually on approximately 40,000 households

(including about 30,000 children), includes questions

on days of limited activity for health reasons and on

hospital and physician use. From time to time, additional information is collected on medical care costs

or on specific child health issues. As currently formulated, only very general information regarding injuries (e. g., the number of limited activity days of children due to injuries) is regularly collected by the

survey. There is currently an effort underway to design the next Child Health Supplement to NHIS (scheduled for 1988) to include some additional, more specific questions on accidental injuries (564).

Unlike other national data sources, NHIS collects

background information that can be used to help

correlate injury risk with social, economic, environmental, and behavioral factors. When combined with

more specific information on injuries from the survey,

this information might help in formulating preventive

strategies and targeting them to populations at the

greatest risk of accidental injuries.

Traffic Accident Data

The National Highway Traffic Safety Administration (NHTSA) compiles traffic accident data from two

sources. The first is the Fatal Accident Reporting System (FARS), under which all 50 States provide comprehensive data to NHTSA on all fatal motor vehicle

accidents that occur on trafficways (261). FARS

reports are based primarily on police reports. Data include geographic details, roadway and other conditions, information on the driver of the vehicles(s) (e.g.,

prior driving offenses, intoxication), and information

on both fatally and nonfatally injured victims (including pedestrians and other persons involved). This database yields extensive information on the circumstances

surrounding fatalities; its main drawback, of course,

is that only fatal accidents on trafficways (e. g., not

driveway fatalities) are included. Data on injured victims are not extensive.

The second database maintained by NHTSA is the

National Accident Sampling System. Unlike FARS,

this system includes many motor vehicle accidents reported to the police but not involving a fatality. It is

based on a statistical sample of 15,000 accidents per

year. Data from police reports, collected by a sample

survey team, are supplemented with hospital records

and, sometimes, by observations of the involved vehicles (261). Advantages of this database area broader

representation of traffic accidents and more extensive

injury and hospital data; disadvantages are the limits

of the sample size and the fact that the database includes only traffic accidents.
Appendix L

Preventing Unintended Pregnancies in

High= Risk Women: School-Based Clinics

One approach to altering the rate of infant mortality and low birthweight would be to give women at

high risk of poor birth outcomes enhanced opportunities to avoid unintended pregnancies (296). It is well

known that certain demographically defined groups

of women have much higher rates of low birthweight

and neonatal mortality than do others, although the

exact causes of demographic differences in outcomes

are not well understood.

Table L-1 displays national statistics on neonatal

mortality rates and low birthweight birth rates by selected maternal demographic characteristics. Because

of the close relationship between low birthweight and

neonatal mortality, many of the risk factors associated with low birthweight are also predictors of neonatal mortality. Mothers in their twenties and low thirties have the lowest neonatal mortality rates and the

lowest percentage of low birthweight births. In comparison to these women, teenagers and women age 35

and above are at higher risk of having babies that die

in the neonatal period (the first 28 days of life) and

that weigh 2,500 grams (5 lbs. 8 oz. ) or less at birth.

Education level is included in table L-1 as a proxy for

income or socioeconomic status. Women who have

not graduated from high school are at greater risk of

experiencing poor birth outcomes than women with

at least a high school education.

The demographic characteristics found to be related

to elevated risk of low birthweight tend to cluster in

individual women, but the literature does not specify

how the presence of more than one risk factor in an

individual woman affects her total risk for poor birth

outcomes. Nevertheless, it would appear from table

L-1 that providing opportunities for pregnancy prevention to unmarried teens, particularly to those in

poverty, would target a group at especially high risk

of low birthweight and neonatal mortality.

In 1981, an estimated 24 percent of 20-year-old

women in the United States had experienced a first

pregnancy before the age of 18 (443), In 1984, about

1,005,000 pregnancies occurred to adolescents, but approximately 40 percent of those ended in abortion and

13 percent in miscarriage (443). Thus, in 1984, the

United States experienced about 470,000 births to teenage mothers (443). The vast majority of teenage pregnancies are not only unintended, but unwanted once

they occur. In 1979, 82 percent of unmarried teenagers

who became pregnant reported that the pregnancy was

Table L-1 .—Relationship Between Selected Maternal

Characteristics and Poor Birth Outcomes

Neonatal

Maternal mortality rate Low birthweight

characteristics (1980)’ rate (1984)b

Age:

<15 . . . . . . . . . . 21.9 13.6

15-19 . . . . . . . . 9.6 9.3

20-24 . . . . . . . . . 7.1 6.9

25-29 . . . . . . . . . 6.5 5.9

30-34 . . . . . . . . . 6.7 5.9

35-39 . . . . . . . . . 8.1 6.7

40-44 ., . . . . . . . 10.6 8.3

45-49 . . . . . . . . . 17.4 9.8

Race:

White. . . . . . . . . 6.3 5.6

Black . . . . . . . . . 12.3 12.4

Education level:

0-8 yr . . . . . . . . . 10.4 9.4

9-11 yr . . . . . . . . 9.8 10.2

12 yr . . . . . . . . . 7.4 6.8

13-15 yr . . . . . . . 6.3 5.6

> 16 yr. . . . . . . 5.6 4.5

Marital status:

Married . . . . . . . 8.6 5.6

Not married . . . 15.6 11.0

Number of previous births:

o 7.8

1. . . . . . . . . . . . . . . 6.4

2 . . . . . . . . . . . . . 6.7 NAC

3 . . . . . . . . . . . . . 7.1

4 . . . . . . . . . . . . . 8.8

5-15 . . . . . . . . . . 9.1

‘Deaths in the first 28 days of life per 1,000 live Singleton births, 1980

b percen tage of tive births with b!rthweight of 2,500 grams (about 5 Ibs 8 oz ) or

less

C NA = not available

SOURCES: Neonatal mortality rates Preliminary tables from the National Infant

Mortality Surveillance Project, Centers for Disease Control, Public

Health Service, U.S Department of Health and Human Services, At.

Ianta, GA, May 1966, 1. Eberstetn, R. Weller, and D White, Flortda State

Un!verslty, Gainesville, FL, unpublished data from the 1980 National

Natality Survey, prepared for the Office of Technology Assessment,

U S. Congress, Washington, DC, 1966. Percentage of low birthweight

births U S Department of Health and Human Serwces, Public Health

Service, National Center for Health Statistics, unpublished data in

preparation for Vifa/ Stafist/cs of the I./n/ted States” 1984, Vo/ /“ Afatallfy, Hyattswlle, MD, 1986

unwanted, but of those who did not want the pregnancy, only 32 percent used contraception (443).

Strategies for preventing teen pregnancy span a wide

range of philosophies, from programs that are intended

to influence teens’ attitudes about sexual behavior and

relationships to those that prescribe or dispense contraceptive services (443,652a). Two recent excellent re-
Appendix L—Preventing Unintended Pregnancies in High-Risk Women: School Based Clinics ● 259

—

views of the evidence on the effectiveness of programs

addressing teen pregnancy have concluded that the

quality of the evidence on what programs work is

poor, owing largely to the difficulty of measuring pregnancy rates among teens, vague program objectives

that go beyond pregnancy prevention as a primary

goal, and poorly conceived evaluation plans (443,

652a). Despite these problems, there is accumulating

tentative evidence that comprehensive school-based

clinics that offer contraceptive services (as well as other

kinds of health care) can influence teenage pregnancy

rates and avoid unwanted births.

Teenagers have special needs when it comes to family planning services. The usefulness of the existing network of family planning agencies is limited by factors

that include the need for confidentiality, a caring attitude on the part of staff, and proximity (515a). Schoolbased clinics are clinics in or near junior or senior high

schools that typically offer a variety of health care

services, including physical examinations, treatment

for minor acute illness, preventive services, family

planning, pregnancy testing, prenatal care, and screening for venereal disease. Services offered vary widely

among programs, and none of the school-based programs consider adolescent family planning to be their

sole purpose. The early experience of a program in

Minnesota made it clear that school-based clinics

limited to reproductive health care alone would be unacceptable to students, largely for reasons of confidentiality (142). At present, while many school-based

clinics will refer students to other providers for

prescription contraceptives when appropriate, only a

minority will prescribe such methods, and only a few

actually dispense contraceptives at the clinic site.

The number of school-based health clinics has increased dramatically in the past 3 years. In March

1987, there were 85 clinics affiliated with junior high

or high schools throughout the country, up from 61

such clinics in the summer of 1986 (385,385a). Such

clinics are usually staffed by nurse practitioners, clinic

aides, part-time physicians, social workers, nutritionists, and other professionals.

The effectiveness of school-based clinics in preventing pregnancies and births among adolescents has been

examined in three studies to date. Two of the studies

assessed a school-based clinic program with three sites

in St. Paul, Minnesota (147,333). The third study

evaluated a school-based clinic program in Baltimore,

Maryland (777).

The two studies of the Minnesota school-based clinic

program suggested that the program was successful in

reducing birth rates among female students (147,333).

From 1976 to 1983, birth rates to female students declined by 50 percent —from 60 births per 1,000 students

in 1976-77, to 46 per 1,000 in 1978-79 (147), to 30 per

1,000 in 1982-83 (333). Contraception continuation

rates were quite high (approximately 90 percent) in the

population. served by the school-based clinics—much

higher than the continuation rates observed among

adolescent users of regular family planning clinics.1

The studies of the Minnesota school-based clinic

program have methodological limitations. Clinic staff

very probably did not know of all relevant pregnancies and births during the study periods. Pregnancies,

births, abortions, and miscarriages occurring to clinic

attenders who dropped out of school and clinic nonusers may have been missed. Nevertheless, the overall reductions in births observed over the period from

1976 to 1983 are quite large, indicating that even with

some overestimation of effectiveness, the Minnesota

school-based clinic program had a substantial impact

on births among students.

In the 1986 study of a school-based clinic program

in Baltimore, the investigators collected data on students from four schools (777). Most of the students

were black, inner-city adolescents from families with

low socioeconomic status. Students from three schools

who received services from an adolescent health center located within three blocks of their schools formed

an experimental group. Students from two other schools

not served by the clinic were used as a comparison

group. z

This study showed major impacts of the Baltimore

school-based clinic program in preventing pregnancies

among students receiving services. Pregnancies among

students receiving services from the adolescent health

center increased 13 percent after 16 months of exposure, while pregnancies among comparison group

students who were not receiving such services increased 50 percent.

More importantly, after 20 months of exposure,

pregnancy rates among students receiving clinic services dropped by 22.5 percent, but rose by 39.5 percent among students not receiving clinic services. At

28 months, pregnancies were down by 30 percent

among students receiving clinic services and up by 58

percent among students in the comparison schools. In

addition, the proportion of students who were sexually

active declined in the program school over the course

of the study.

Although it is premature to draw conclusions about

the effectiveness of school-based clinics in reducing

‘Fewer than twmth]rcis (~t adt,lescent famll>, plannlng cllntc patients cons]stentl] use ettectlve methcxls (~t c(>ntraceptlt~n during periods of sexual act]\, -

]ty [ 2@a )

‘The student boci]es (~t the cc)mparlwn schools mere racially m]xed, but

Of Slnlliar ‘A ) CICWC (Jnornlc Stdt U\ The analy~]s was bawd only on b]ach students in the comparls~ln >ch(,(,l<
260 ● Healthy Children: Investing in the Future

high-risk unwanted pregnancies, the evidence accumulated to date does look promising. A large evaluation

of school-based clinics is currently underway at the

Center for Population Options (333a). The results of

that evaluation should offer more information not only

on how well such clinics work as a whole, but also on

the effectiveness of specific components of a program

—such as whether or not the clinic dispenses or prescribes contraceptives—in altering teenage pregnancy.

The costs of providing school-based health services

is about $125 per year per student (443). School-based

clinics currently receive about two-thirds (64 percent)

of their funds from public sources and one-third (36

percent) from private sources. The majority of public

funds for school-based clinics comes from State

sources, through the Maternal and Child Health block

grant or State-only funds (333a). Medicaid’s Early and

Periodic Screening, Diagnosis, and Treatment program

provides about 14 percent of the funds for schoolbased clinics; and other Federal programs, such as Title

X (Family Planning), Title XX (Social Services block

grant), and the community health centers program

provide about 6 percent of the funds (333a).
Appendix M

Glossary of Abbreviations and Terms

Glossary of Abbreviations

AAFP —American Academy of Family

Physicians

AAP —American Academy of Pediatrics

AAPC —American Association for Protecting

Children

ACIP —Immunization Practices Advisory

Committee (PHS)

ACOG —American College of Obstetricians

and Gynecologists

AFDC —Aid to Families With Dependent

Children

BD —biotinidase deficiency

CAH —congenital adrenal hyperplasia

CDC –Centers for Disease Control (PHS)

CEA —cost-effectiveness analysis

CF —cystic fibrosis

CFR —Code of Federal Regulations

CH —congenital hypothyroidism

CHAMPUS—Civilian Health and Medical Program

CHC

COBRA

CPS

CPSC

DDST

DES

DHHS

DTP

EPSDT

FARS

FEP

FR

GAO

HC

HCFA

Hgb

Hib

HIP

of the Uniformed Services

—community health center

—Consolidated Omnibus Budget

Reconciliation Act of 1985 (Public

Law 99-272)

—Current Population Survey

—Consumer Product Safety

Commission

—Denver Developmental Screening

Test

—diethylstilbestrol

–U.S. Department of Health and

Human Services

—diphtheria, tetanus, and pertussis

(vaccine)

—Early and Periodic Screening,

Diagnosis, and Treatment (program)

(Medicaid)

—Fatal Accident Reporting System

—free erythrocyte protopophyrin

—Federal Register

–General Accounting Office (U.S.

Congress)

—homocystinuria

—Health Care Financing

Administration (DHHS)

—hemoglobin

—Haemophilus influenza b

—Health Insurance Plan of New York

HMO

ICHP

IHS

IOM

IPO

MCH

MHC

MIC

MMR

MSUD

NACHRI

NCCAN

NCHS

NEISS

NHIS

NHTSA

NICHD

NICU

NIH

NIMS

NMCUES

OB/GYN

OBRA-81

OBRA-86

OBRA-87

OPV

OTA

PHHS

PHS

PKU

QALY

RCOG

RCT

—health maintenance organization

—Improved Child Health Project

—Indian Health Service

—Institute of Medicine

—Improved Pregnancy Outcome

(project)

—Maternal and Child Health services

(block grant)

—migrant health center

—Maternity and Infant Care (project)

—measles, ‘mumps, and rubella

(vaccine)

—maple syrup urine disease

—National Association of Children’s

Hospitals and Related Institutions

—National Center on Child Abuse and

Neglect (DHHS)

—National Center for Health Statistics

(PHS)

—National Electronic Injury

Surveillance System

—National Health Interview Survey

—National Highway Traffic Safety

Administration (U.S. Department of

Transportation) -

—National Institute for Child Health

and Human Development (PHS)

—neonatal intensive care unit

—National Institutes of Health

—National Infant Mortality Survey

—National Medical Care Utilization

and Expenditure Survey

—obstetrician /gynecologist

—Omnibus Budget Reconciliation Act

of 1981 (Public Law 97-35)

—Omnibus Budget Reconciliation Act

of 1986 (Public Law 99-509)

—Omnibus Budget Reconciliation Act

of 1987 (Public Law 100-203)

—oral polio vaccine

—Office of Technology Assessment

(U.S. Congress)

–Preventive Health and Health

Services (block grant)

–Public Health Service (DHHS)

—phenylketonuria

—quality-adjusted life year

—Royal College of Obstetricians and

Gynecologists

—randomized clinical trial

261
262 . Healthy Children: Investing in the Future

RDS

SCA

SIDS

SMSA

SPRANS

SSI

TIPP

WIC

—respiratory distress syndrome

—sickle cell anemia

—sudden infant death syndrome

—Standard Metropolitan Statistical

Area

—Special Projects of Regional and

National Significance

—Supplemental Security Income

—The Injury Prevention Program

(AAP)

—Women, Infants, and Children

(program)

Glossary of Terms

Abortion rate: The number of induced abortions per

1,000 live births.

Accidental injury: Any injury that is not self-inflicted

or caused by maltreatment.

Acute illness: An illness characterized by a single episode of fairly short duration, usually less than 30

days, and from which the patient can be expected

to return to his or her normal or previous state and

level of activity. Compare chronic illness.

Adverse selection bias in prenatal care studies: A bias

that results from the tendency of women who experience a problem with their pregnancy or who

have information that leads them to expect problems (e.g., a poor pregnancy history) to seek care

early and often. These women are likely to be at

higher than average risk of poor outcomes. Compare favorable selection bias in prenatal care studies.

Aid to Families With Dependent Children (AFDC) program: A program, established by the Social Security Act of 1935, providing cash payments to needy

children (and their caretakers) who lack support because at least one parent is dead, disabled, continually absent from the home, or (in some States) unemployed.

Ambulatory medical care: Medical care services that

are provided to patients who do not require admission to the hospital as inpatients. Such services may

be provided by a private physician or group practice, a public clinic, or a hospital outpatient department.

Ambulatory tocodynamometry: A technique that allows noninvasive ambulatory monitoring of uterine contractions in women at risk for premature

labor and may enhance the effectiveness of the available therapies to reduce the incidence of premature

birth.

Anemia: A condition that exists when the level of hemoglobin in a person’s blood drops to an abnormally low level (e. g., below 11 grams per deciliter

of whole blood).

Antenatal care: Same as prenatal care.

Anticipatory guidance: The provision of health education, information, or counseling in order to influence the parents’ or child’s behavior and thus

favorably influence the child’s health.

Augmented prenatal care services: Prenatal care that

includes supplemental services such as outreach,

transportation, home visitation, nutrition and social services, health education, followup of missed

appointments, case management/coordination of

services, and dental care.

Biotinidase deficiency (BD): A congenital disorder

caused by a deficiency of the enzyme needed to

metabolize the B vitamin biotin leading to an overall deficiency of biotin in the body. If untreated, severe cases of biotinidase deficiency can lead to

necrologic damage, resulting in coma or death in

infancy. Less severe cases (resulting in developmental delay and hearing loss) and asymptomatic cases

also occur.

Birth rate: The number of live births per 1,000 total

population.

Birthweight: The weight of an infant at the time of delivery. Normal birth weight is 2,500 grams (5 lbs. 8

oz. ) and above. Low birth weight is anything below

2,500 grams. Among low birthweight babies, there

are moderately low birth weight babies (who weigh

between 1,500 and 2,500 grams) and very low birthweight babies (who weigh less than 1,500 grams).

Birthweight distribution: The relative frequency of

births in various birthweight categories in a population of newborns.

Birthweight-specific mortality rates: Mortality rates

among newborns classified by birthweight. The

birthweight-specific infant mortality rate is defined

as the number of infants in a given birthweight interval who die in the first year of life per 1,000 live

births in that interval. The birthweight-specific neonatal mortality rate is defined as the number of infants in a given birthweight interval who die in the

first 28 days of life per 1,000 live births in that interval.

Catastrophic stop-loss on out-of-pocket expenses:

Typically, an annual upper limit on the beneficiary’s

out-of-pocket payments for insured services.

Cervical cerclage: A surgical procedure in which the

mouth of a woman’s cervix is physically cinched together with a suture to attempt to stop the course

of premature labor in pregnancy.

Child maltreatment: Behavior that falls into one of the

following categories: physical abuse or neglect, psychological abuse or neglect, or sexual abuse. Abuse

generally implies an act of commission on the part
of a parent or other caretaker, while neglect

an act of omission.

Chronic illness: Any illness persisting over

period of time. Compare acute illness.

implies

a long

Coinsurance: In the context of health insurance, the

percentage of the cost of covered services for which

the beneficiary is responsible.

Community health centers (CHCs): Centers that provide primary health care to medically underserved

areas and are part of the primary care program

administered by the Federal Bureau of Health Care

Delivery and Assistance.

Congenital: Existing at birth.

Congenital adrenal hyperplasia (CAH): A congenital

disorder caused by a deficiency of one or another

of the enzymes in the adrenal cortex that is required

for normal hormone synthesis. Approximately onehalf of all cases are life-threatening if untreated in

the first few days of life.

Congenital hypothyroidism (CH): A congenital disorder involving a deficiency of the hormone thyroxine needed for brain development and physical

growth. If untreated or late treated, congenital

hypothyroidism results in mental retardation and

physical abnormalities.

Continuity of care: A continuous source of medical

care (e. g., primary physician, referral to specialist,

hospital) or a coordinated system to provide comprehensive children’s health care at all levels needed.

Copayment: In insurance, a form of cost-sharing

whereby the insured pays a specific amount at the

point of service or use (e.g., $10 per visit).

Cost-effectiveness analysis (CEA): An analytical technique that compares the costs of alternative projects

to the resultant benefits, with costs and benefits/ effectiveness expressed by different measures. Costs

are usually expressed in dollars, but benefits/effectiveness are ordinarily expressed in terms such as

“lives saved, ” “disability avoided, ” “quality-adjusted

life years saved, ” or any other relevant objectives.

When benefits or effectiveness are difficult to express

in a common metric, they should be (but usually

aren’t) presented as an “array. ”

Cost-saving: An economic concept referring to the results of cost-effectiveness analysis when the net

health care costs of implementing one strategy (compared to another) are less than zero.

Cost-sharing: That portion of the payment to a provider of health care services that is the liability of

the patient and that may include deductibles, copayments, coinsurance, and, under Medicare Part B,

unassigned liability. Also, the general set of financial arrangements under which health care insurance

is contingent on a purchaser’s acceptance of the obliAppendix M—Glossary of Abbreviations and Terms ● 263

gation to pay some portion of the reimbursements

for those services.

Cystic fibrosis (CF): The most common potentially fatal genetic disease in the white population, caused

by a disorder of exocrine glands. Individuals with

cystic fibrosis have a variety of physical abnormalities, most serious among them is chronic obstructive lung disease, which is potentially fatal in early

adulthood.

Deductible: In insurance, an aspect of cost-sharing in

which the insured incurs an initial expense of a specified amount within a given time period (e.g., $250

per year) before the insurer assumes liability for any

additional costs of covered services.

Denver Developmental Screening Test (DDST): A

standardized test, developed in 1967, for the detection of developmental and behavioral problems in

children.

Diphtheria: An acute infectious disease caused by a

bacterium that attacks the throat and nasal passages,

interfering with breathing and sometimes producing a toxin that can damage the heart and nerves.

Diphtheria, tetanus, and pertussis (DTP) vaccine: A

combination vaccine composed of two toxoids

(diphtheria and tetanus) and one inactivated wholecell bacterial vaccine (pertussis).

Disability: The presence of one or more functional

limitations. A person with a disability has a limited

ability or an inability to perform one or more basic

life functions (e.g., walking) at a level considered

“typical. ”

Discounting: A procedure used in economic analysis

to express as “present values” those costs and benefits that will occur in future years. Discounting is

based on two premises: 1) individuals prefer to receive benefits today rather than in the future; and

2) resources invested today in alternative programs

could earn a return over time.

Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program: A State and federally

funded, State-administered preventive health care

program that mandates screening and followup of

Medicaid-eligible infants and children for any illnesses, abnormalities, or treatable conditions.

Econometric techniques: A group of statistical methods used to estimate and test models of economic

behavior or systems.

Effectiveness: The probability of benefit to individuals

in a defined population from a medical technology

applied for a given medical problem under average

or actual conditions of use.

False negative: In medical diagnostics, a negative test

result in an individual who actually has the disease

or characteristic being tested for. The test incorrectly
264 . Healthy Children: Investing in the Future

indicates that the individual does not have the particular disease or characteristic.

False positive: In medical diagnostics, a positive test

result in an individual who does not have the disease or characteristic being tested for. The test incorrectly diagnoses the individual as having the particular disease or characteristic.

Favorable selection bias in prenatal care studies: A bias

that results from the tendency of women who routinely behave in healthful ways to seek prenatal care

early and often. These women are probably healthy

on the whole and thus are likely to be at lower than

average risk of poor outcomes. Compare adverse

selection bias in prenatal care studies.

Fee-for-service payment: A method of paying for medical services in which each service performed by an

individual provider bears a related charge. This

charge is paid by the individual patient receiving the

service or by an insurer on behalf of the patient.

Fetal death: The product of conception, which, after

separation from its mother, does not breathe or

show other signs of life required to meet the World

Health Organization’s criteria for a live birth. Compare live birth.

Fetal death rate: The ratio of fetal deaths to fetal deaths

plus live births.

First dollar deductible: In the context of insurance, the

amount (which may vary by type of benefit) that

a beneficiary must pay each year before he or she

is eligible for coverage.

alactosemia: A deficiency of the enzyme needed to

metabolize galactose, a type of sugar found in milk

products. Untreated galactosemia usually leads to

blood poisoning, progressive liver damage, and

death by the first few weeks of life.

Gestational age: The number of completed weeks

elapsed between the first day of the last normal menstrual period and the date of delivery.

Haemophilus influenza b (Hib): The leading cause of

serious systemic bacterial disease in the United

States, including bacterial meningitis, epiglottitis,

sepsis, and pneumonia.

Head Start: A Federal program begun in 1965 that provides educational, social, nutritional, and medical

services to low-income preschool children. The program is overseen by the Administration for Children, Youth and Families (DHHS), but it is administered at the local level by Head Start agencies.

Health maintenance organization (HMO): A health

care organization that, in return for prospective per

capita (cavitation) payments, acts as both insurer

and provider of comprehensive but specified medical services. Prepaid group practices and individual

practice associations are types of HMOs.

Hematocrit: The volume occupied by the cellular elements of blood in relation to the total volume,

Hemoglobin (Hgb): The oxygen-carrying pigment

found in red blood cells that serves as the primary

oxygen transport vehicle in vertebrates. Hemoglobin is a protein composed of a single iron molecule

surrounded by four globin molecules, two each of

two different types (two alpha globins and two beta

globins in normal adult humans).

Herd immunity: The level of immunity that must be

attained to prevent epidemics of vaccine-preventable

diseases in a specific population.

High risk: At greater than normal risk for contracting

a specific disease or experiencing a condition,

Homocystinuria (HC): A congenital disorder caused

by a deficiency of one of the enzymes involved in

the metabolism of the amino acid homocystine. If

left untreated, homocystinuria can lead to lifethreatening episodes of vascular thrombosis; most

untreated survivors go on to have mental deficiency,

and half of them may die in early adulthood.

Immunization: The deliberate introduction of an antigenic substance (vaccine) into an individual, with

the aim of producing immunity to a disease, Used

interchangeably with vaccination in this report.

Impairment: See disability.

Incidence: The frequency of new occurrences of a disease within a defined time interval. Incidence rate

is the number of new cases of a specified disease

divided by the number of people in a population

over a specified period of time, usually 1 year. Compare prevalence.

Infant mortality: Death in the first year of life. About

1 percent of all babies born in the United States die

in the first year of life. It includes neonatal mortality and postneonatal mortality.

Infant mortality rate: The number of deaths among

children under 1 year old per 1,000 live births in a

given year. The infant mortality rate is the sum of

two components: the neonatal mortality rate and

the postneonatal mortality rate.

Inpatient care: Health care that includes an overnight

stay in a medical facility.

Intrapartum care: Medical care received during labor

and delivery. Compare postpartum care and prenatal care.

Live birth: According to the World Health Organization, “the complete expulsion or extraction from its

mother of a product of conception, irrespective of

the duration of pregnancy, which, after such separation, breathes or shows any other evidence of life

such as beating of the heart, pulsation of the umbilical cord, or definite movement of voluntary muscles. ” This definition is the basis for most States’ re-
Appendix M—Glossary of Abbreviations and Terms ● 265

quirements governing the reporting of live births.

Compare fetal death.

Low birthweight: Birthweight of less than 2,500 grams

(5 lbs. 8 oz.).

Low birthweight rate: Percentage of live births with

birthweight of 2,500 grams or less.

Major medical coverage: Health insurance coverage

that provides for an array of services and usually

includes an annual deductible, coinsurance requirements, and maximum benefit limits. By comparison,

basic benefit plans usually provide first-dollar coverage but cover only a very narrow set of services

(e.g., hospital, surgical).

Maple syrup urine disease (MSUD): A congenital disorder of amino acid metabolism involving the three

branched-chain amino acids: leucine, isoleucine, and

valine. Classic MSUD results in life-threatening

acidemia and necrologic dysfunction in the newborn

period, and is fatal if left untreated.

Maternal and Child Health services (MCH) block grant

program: A Federal block grant program authorized

under Title V of the Social Security Act, that provides health services to mothers (e. g., prenatal care)

and children (e.g., well-child care). Created by the

Omnibus Budget Reconciliation Act of 1981, the

MCH block grant consolidated several categorical

grant programs into one block grant.

Maternity care: Medical services received from conception through labor and delivery. Prenatal care

and intrapartum care combined are referred to as

maternity care.

Measles: A highly communicable viral disease involving primarily a harassing cough with steadily

mounting fever followed by the eruption of red papules on the skin.

Measles, mumps, rubella (MMR) vaccine: A combination vaccine composed of the three live, attenuated virus vaccines against measles, mumps, and

rubella.

Medicaid: A federally aided, State-administered program that provides medical assistance for lowincome people meeting specific income and family

structure requirements.

Medically needy Medicaid recipients: States have the

option to offer Medicaid to “medically needy” people who would be categorically eligible for Medicaid but whose income and resources lie above the

standards for Aid to Families With Dependent Children. Each State sets its own medically needy resource and income standards up to 133 percent of

State AFDC income standards.

Migrant health centers (MHCs): Centers that provide

primary health care to migrant and seasonal farm

workers and their families and are part of the primary care program administered by the Federal Bureau of Health Care Delivery and Assistance.

Moderately low birthweight: Birthweight between

1,500 and 2,500 grams.

Morbidity: The condition of being diseased.

Mumps: A communicable disease caused by a virus

that produces painful swelling of the salivary glands

in the face and neck. Sometimes other organs may

become inflamed.

Neonatal: Pertaining to the first 4 weeks (28 days) after birth.

Neonatal intensive care: Constant and continuous care

of the critically ill newborn.

Neonatal intensive care unit (NICU): A specialized

hospital unit combining high technology and highly

trained staff that treats seriously ill newborns.

Neonatal mortality: Death in the first 28 days of life.

Neonatal mortality rate: The number of deaths during the first 28 days of life per 1,000 live births.

Neonate: A newborn infant less than a month old.

Newborn screening: The process of testing asymptomatic newborn infants for diseases that require medical treatment.

Normal birthweight: Birthweight of 2,500 grams (5 lbs.

8 oz. ) or above. Compare low birth weight.

Oral polio vaccine (OPV): A live, attenuated vaccine

for the prevention of poliomyelitis. The vaccine is

administered orally.

Outpatient care: Care that is provided in a hospital

and does not include an overnight stay.

Perinatal: Pertaining to or occurring in the period

shortly before and after birth; variously defined as

beginning with the completion of the 20th to 28th

week of gestation and ending 7 to 28 days after

birth.

Perinatal care: Medical care pertaining to or occurring

in the period shortly before and after birth, variously defined as beginning with the completion of

the 20th to 28th week of gestation and ending 7 to

28 days after birth.

Pertussis (whooping cough): An infectious inflammatory respiratory disease of children caused by the

bacterium Bordetella pertussis. The disease is characterized by explosive attacks of coughing ending

in an inspiratory whoop.

Phenylketonuria (PKU): A genetic disorder of amino

acid metabolism, characterized by the inability to

metabolize the amino acid phenylalanine. Untreated

or late treated PKU results in severe mental retardation in the majority of cases.

Poliomyelitis: An acute viral disease, occurring sporadically and in epidemics, and characterized clinically by fever, sore throat, headache, and vomiting, often with stiffness of the neck and back. Major
266 ● Healthy Children: Investing in the Future

illness can lead to paralysis.

Postneonatal mortality: Death between the first 28

days in life and the first year of life.

Postneonatal mortality rate: The number of deaths

among infants between 28 days old and 1 year old

per 1,000 live births.

Postpartum care: Medical services rendered to a

mother immediately following a baby’s delivery to

the sixth week after birth. Compare intrapartum

care and prenatal care.

Power of a statistical test: The probability that a specified difference between the experimental and comparison groups in a study will be detected in the experiment.

Prenatal: Occurring or formed before birth. Also

called “antenatal. ”

Prenatal care: Medical services delivered from conception to labor. Prenatal care and intrapartum care

combined are referred to as maternity care. Early

prenatal care is care received in the first trimester

of pregnancy. Compare intrapartum care and postpartum care.

Prevalence: The frequency of existing cases of a disease or condition within a defined time interval in

a defined population. The prevalence rate is the

number of existing cases of a disease or other condition in a defined population at a particular time

or over a specified time period. Compare incidence.

Preventive Health and Health Services (PHHS) block

grant: A Federal block grant program, created by

the Omnibus Budget Reconciliation Act of 1981

(Public Law 97-35), that provides funding to States

for a broad array of preventive health services.

Preventive strategy: Any action taken by individuals,

professionals, or governments to alter the environment, change the behavior of a child or the family,

or provide effective health care with the intention

of preventing disease or injury.

Prospective study: Study in which subjects are assigned to alternatives and observed in an experimental context. Compare retrospective study.

Randomized clinical trial (RCT): An experiment designed to test the safety and efficacy of a medical

technology in which people are randomly allocated

to experimental or control groups, and outcomes are

compared.

Respiratory distress syndrome (RDS): An acute respiratory disorder which, in premature infants, is

thought to be caused by a deficiency of pulmonary

surfactant. In severe form, patients often need mechanical assistance to breathe.

Resuscitation: The return to life or consciousness of

one who is apparently dead or whose respirations

have ceased.

Retrospective study: Study in which effects are observed without any control over the original process of assignment. Compare prospective study.

Rubella (German measles): A mild viral illness that

causes a diffuse reddish rash and swollen lymph

glands. Infection in a pregnant woman is of greatest concern, as it can lead to miscarriage, stillbirth,

or birth defects.

School-based clinics: Clinics in or near junior or senior high schools that typically offer a variety of

health care services, including physical examinations, treatment for minor acute illness, preventive

services, family planning, pregnancy testing, prenatal care, and screening for venereal disease.

Self-selection bias: The likelihood that people who seek

more care, or different kinds of care are inherently

different in terms of their health risks from those

who do not.

Sensitivity analysis: A study of the effect of changes

in assumptions on the findings of a cost-effectiveness

analysis.

Sensitivity of a test: The percentage of all those who

actually have the condition being tested for who are

correctly identified as positive by the test. Operationally, it is the number of true positive test results

divided by the number of patients that actually have

the disease (true positives divided by the sum of true

positives plus false negatives). Compare specificity

of a test.

Sickle cell anemia (SCA): A genetic disorder of hemoglobin synthesis leading to the production of abnormal red blood cells. Infants with sickle cell anemia

are at risk of overwhelming infection and sudden

death in the first few years of life. Painful episodes

of vase-occlusive crises are the hallmark of sickle

cell anemia, although there is wide variability in expression of the disease in older patients.

Specificity of a test: The percentage of all those who

do not have the condition being tested for who are

correctly identified as negative by the test. Operationally, it is the number of negative test results

divided by the number of patients that actually have

the disease (true negatives divided by the sum of true

negatives plus false positives). Compare sensitivity

of a test.

Supplemental Security Income (SSI) program: A Federal income support program for low-income disabled, aged, and blind persons.

Technology-dependent children: Children requiring

the use of a medical device to compensate for the

loss of use of a body function and substantial and

complex daily nursing care to avert death or further disability.

Tetanus: A noncommunicable disease caused by the
Appendix M—Glossary of Abbreviations and Terms Ž 267

toxin released from the bacteria Clostridium tetani

resulting in trismus (“lockjaw”), generalized muscle spasm, arching of the back, glottal spasm, seizures{ or respiratory spasms and paralysis.

Third-party payment: Payment by a private health insurer or government program to a medical provider

for care given to a patient.

Tocodynamometry: See ambulatory tocodynamometry.

Tocolytic: Stopping the onset of premature labor during pregnancy.

Trimester: A period of 3 months.

Tuberculosis: A chronic infectious disease of humans

and animals caused by any of several species of

mycobacteria. It usually begins with lesions in the

lung, but can spread to other parts of the body.

Ultrasound: High-frequency sound waves that can be

focused and used to picture tissues, organs, structures, or tumors within the body.

Vaccination: The deliberate introduction of an antigenic substance (vaccine) into an individual with the

aim of producing immunity to a disease. Used interchangeably with the term immunization in this

report.

Vaccine: A preparation of living, attenuated, or killed

bacteria or viruses, fractions thereof, or synthesized

antigens identical or similar to those found in the

disease-causing organisms, that is administered to

produce or increase immunity to a particular

disease.

Validity: A measure of the extent to which an observed

situation reflects the “true” situation. Internal validity is a measure of the extent to which study results reflect the true relationship of a technology to

the outcome of interest in the study subjects. External validity is a measure of the extent to which study

results can be generalized to the population which

is represented by individuals in the study.

Varicella: Chickenpox.

Very low birthweight: Birthweight of less than

grams (3 lbs. 5 oz.).

Well-child care: Preventive health care for chi

including immunization, physical examination

1,500

dren,

s and

other tests that screen for illness or developmental

problems, health education, and parental guidance.

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