Neonatal Intensive Care for Low

Birthweight Infants: Costs and Effectiveness

December 1987

NTIS order #PB88-158902
Library of Congress Catalog Card Number 87-619883

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 case study)
Preface

Neonatal Intensive Care for Low Birth weight

Infants: Costs and Effectiveness is Case Study 38

in OTA’s Health Technology Case Study Series.

This case study has been prepared in connection

with OTA’s assessment, Healthy Children: Investing in the Future, which was requested by the

House Energy and Commerce Committee and the

Senate Labor and Human Resources Committee.

OTA case studies are designed to fulfill two

functions. The primary purpose is to provide

OTA with specific information that can be used

in forming general conclusions regarding broader

policy issues. The first 19 cases in the Health Technology Case Study Series, for example, were conducted in conjunction with OTA’s overall project

on The Implications of Cost-Effectiveness Analysis of Medical Technology. By examining the 19

cases as a group and looking for common problems or strengths in the techniques of cost-effectiveness or cost-benefit analysis, OTA was able

to better analyze the potential contribution that

those techniques might make to the management

of medical technology and health care costs and

quality.

The second function of the case studies is to

provide useful information on the specific technologies covered. The design and the funding levels of most of the case studies are such that they

should be read primarily in the context of the associated overall OTA projects. Nevertheless, in

many instances, the case studies do represent extensive reviews of the literature on the efficacy,

safety, and costs of the specific technologies and

as such can stand on their own as a useful contribution to the field.

Case studies are prepared in some instances because they have been specifically requested by

congressional committees and in others because

they have been selected through an extensive review process involving OTA staff and consultations with the congressional staffs, advisory panel

to the associated overall project, the Health Program Advisory Committee, and other experts in

various fields. Selection criteria were developed

to ensure that case studies provide the following:

. examples of types of technologies by function (preventive, diagnostic, therapeutic, and

rehabilitative);

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examples of types of technologies by physical nature (drugs, devices, and procedures);

examples of technologies in different stages

of development and diffusion (new, emerging, and established);

examples from different areas of medicine

(e.g., general medical practice, pediatrics, radiology, and surgery);

examples addressing medical problems that

are important because of their high frequency

or significant impacts (e. g., cost);

examples of technologies with associated high

costs either because of high volume (for lowcost technologies) or high individual costs;

examples that could provide information material relating to the broader policy and methodological issues being examined in the particular overall project; and

examples with sufficient scientific literature.

Case studies are either prepared by OTA staff,

commissioned by OTA and performed under contract by experts (generally in academia), or written by OTA staff on the basis of contractors’

papers.

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Although cases are not statements of official

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scientific quality and objectivity. During the various stages of the review and revision process,

therefore, OTA encourages, and to the extent possible requires, authors to present balanced information and recognize divergent points of view.
-

Health Technology Case Study Seriesa

Case Study Case study title; author(s); Case Study Case study title; author(s);

Series No. OTA publication numberbSeries No. OTA publication numberb

1

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7

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9

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12

13

14

15

16

17

18

19

Formal Analysis, Policy Formulation, and End-Stage Renal

Disease;

Richard A. Rettig (OTA-BP-H-9 (1))C

The Feasibility of Economic Evaluation of Diagnostic Procedures: The Case of CT Scanning;

Judith L. Wagner (OTA-BP-H-9(2))

Screening for Colon Cancer: A Technology Assessment;

David M. Eddy (OTA-BP-H-9(3))

Cost Effectiveness of Automated Multichannel Chemistry

Analyzers;

Milton C. Weinstein and Laurie A. Pearlman

(OTA-BP-H-9(4))

Periodontal Disease: Assessing the Effectiveness and Costs of

the Keyes Technique;

Richard M. Scheffler and Sheldon Rovin

(OTA-BP-H-9(5))

The Cost Effectiveness of Bone Marrow Transplant Therapy

and Its Policy Implications;

Stuart O. Schweitzer and C. C. Scalzi (OTA-BP-H-9(6))

Allocating Costs and Benefits in Disease Prevention Programs:

An Application to Cervical Cancer Screening;

Bryan R. Luce (Office of Technology Assessment)

(OTA-BP-H-9(7))

The Cost Effectiveness of Upper Gastrointestinal Endoscopy;

Jonathan A. Showstack and Steven A. Schroeder

(OTA-BP-H-9(8))

The Artificial Heart: Cost, Risks, and Benefits;

Deborah P. Lubeck and John P. Bunker

(OTA-BP-H-9(9))

The Costs and Effectiveness of Neonatal Intensive Care;

Peter Budetti, Peggy McManus, Nancy Barrand, and

Lu Ann Heinen (OTA-BP-H-9 (1 O))

Benefit and Cost Analysis of Medical Interventions: The Case

of Cimetidine and Peptic Ulcer Disease;

Harvey V. Fineberg and Laurie A. Pearlman

(OTA-BP-H-9(11))

Assessing Selected Respiratory Therapy Modalities: Trends and

Relative Costs in the Washington, D.C. Area;

Richard M. Scheffler and Morgan Delaney

(OTA-BP-H-9(121)

Cardiac Radionuclide Imaging and Cost Effectiveness;

William B. Stason and Eric Fortess (OTA-BP-H-9(13))

Cost Benefit Cost Effectiveness of Medical Technologies: A

Case Study of Orthopedic Joint Implants;

Judith D. Bentkover and Philip G. Drew (OTA-BP-H-0 (14))

Elective Hysterectomy: Costs, Risks, and Benefits;

Carol Korenbrot, Ann B. Flood, Michael Higgins,

Noralou Roos, and John P. Bunker (OTA-BP-H-9(15)}

The Costs and Effectiveness of Nurse Practitioners;

Lauren LeRoy and Sharon Solkowitz (OTA-BP-H-9(16))

Surgery for Breast Cancer;

Karen Schachter Weingrod and Duncan Neuhauser

(OTA-BP-H-9(17))

The Efficacy and Cost Effectiveness of Psychotherapy;

Leonard Saxe (Office of Technology Assessment)

(OTA-BP-H-9 (18))d

Assessment of Four Common X-Ray Procedures;

Judith L. Wagner (OTA-BP-H-9 (19))e

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borlglna] publication numbers appear in parentheses.

c

The first 17 cases in the series were 17 separately issued cases In &c/+~r[)und

Paper #2 Case Studies of Lfedical Technologiesr prepared In conlunctlon

w’]th OTA s August 1980 report The Implicatmns of Cmt-Eflect/veness .,in.;l

}rSIS Of )lfedIcJ/ Technology},

20

21

22

23

24

25

26

27

28

29

30

31

32

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35

36

37

38

Mandator y Passive Restraint Systems in Automobiles: Issues

and Evidence;

Kenneth E. Warner (OTA-BP-H-15 (20))f

Selected Telecommunications Devices for Hearing-Impaired

Persons;

Virginia W. Stern and Martha Ross Redden

(OTA-BP-H-16(21))g

The Effectiveness and Costs of Alcoholism Treatment;

Leonard Saxe, Denise Dougherty, Katharine Esty,

and Michelle Fine (OTA-HCS-22)

The Safety, Efficacy, and Cost Effectiveness of Therapeutic

Apheresis;

John C. Langenbrunner (Office of Technology Assessment)

(OTA-HCS-23)

Variation in Length of Hospital Stay: Their Relationship to

Health Outcomes;

Mark R. Chassin (OTA-HCS-24)

Technology and Learning Disabilities;

Candis Cousins and Leonard Duhl (OTA-HCS-25)

Assistive Devices for Severe Speech Impairments;

Judith Randal (Office of Technology Assessment)

(OTA-HCS-26)

Nuclear Magnetic Resonance Imaging Technology: A Clinical,

Industrial, and Policy Analysis;

Earl P. Steinberg and Alan Cohen (OTA-HCS-27)

Intensive Care Units (ICUs): Clinical Outcomes, Costs, and

Decisionmaking;

Robert A. Berenson (OTA-HCS-28)

The Boston Elbow;

Sandra J. Tanenbaum (OTA-HCS-29)

The Market for Wheelchairs: Innovations and Federal Policy;

Donald S. Shepard and Sarita L. Karen (OTA-HCS-30)

The Contact Lens Industry: Structure, Competition, and Public

Policy;

Leonard G. Schifrin and William J. Rich (OTA-HCS-31 )

The Hemodialysis Equipment and Disposable Industry;

Anthony A. Romeo (OTA-HCS-32)

Technologies for Managing Urinary Incontinence;

Joseph Ouslander, Robert Kane, Shira Vollmer, and Melvyn

Menezes (OTA-HCS-33)

The Cost Effectiveness of Digital Subtraction Angiography in

the Diagnosis of Cerebrovascular Disease;

Matthew Menken, Gordon H. DeFriese, Thomas R. Oliver,

and Irwin Litt (OTA-HCS-34)

The Effectiveness and Costs of Continuous Ambulatory

Peritoneal Dialysis (CAPD)

William B. Stason and Benjamin A. Barnes (OTA-HCS-35)

Effects of Federal Policies on Extracorporeal Shock Wave

Lithotripsy

Elaine J. Power (Office of Technology Assessment)

(OTA-HCS-36)

Nurse Practitioners, Physician Assistants, and Certified NurseMidwives: A Policy Analysis;

(OTA-HCS-37)

Neonatal Intensive Care for Low Birthweight Infants: Costs

and Effectiveness

(OTA-HCS-38)

dBachground paper #3 t. The ]mpllcatlc)ns Of Co5t-Effectj L~enes5 Anal~rs)s (It

,tled)cal Technology.

‘Background Paper #5 to The lmplicat]orts of Cost-Effect] ventw And/>rws (d

Lfedlcal Technology

~Backgrc)und Paper t] to OTA’S Nlay 1982 report Techno/og}’ ami Handicapped People.

g~ackground [’aPer gz to Techno/og} .]nd Handicapped Peep/e

iv
OTA Project Staff—Neonatal Intensive Care for

Low Birthweight Infants: Costs and Effectiveness

Roger C. Herdman, Assistant Director, OTA

Health and Life Sciences Division

Clyde J. Behney, Health Program Manager

Judith L. Wagner, Project Director

Pony M. Ehrenhaft, Study Director

Other Contributing Staff

David W. Alberts, Research Analyst

Sarah M. Dry, Research Assistant

Maria Hewitt, Analyst

Kerry Britten Kemp, Division Editor

Virginia Cwalina, Administrative Assistant

Carol Ann Guntow, P.C. Specialist

Karen T. Davis, Secretary/Word Processor Specialist

Carolyn Martin, Clerical Assistant
Advisory Panel on Technology and Children’s Health

Harvey Fineberg, Chairman

Harvard School of Public Health

Boston,

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

Birmington, AL

t

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

MA

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.

vi
CONTENTS

CHAPTER 1: SUMMARY AND CONCLUSIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Scope of the Case Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Organization of the Case Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Summary . . . . . . . . . . . . . . . . . . . . . . . ..., . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Supply, Use, and Costs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Mortality and Morbidity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Financing. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Access . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Cost-Effectiveness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

CHAPTER 2: SUPPLY, USE, AND COST OF NEONATAL INTENSIVE CARE . . . . . . . . . . . .

Introduction .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

supply . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Utilization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

cost... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

CHAPTER 3: EFFECTIVENESS OF NEONATAL INTENSIVE CARE . . . . . . . . . . . . . . . . . . . . . .

Introduction ..., ..., ., ..., . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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

Handicap Rates . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .,

Neonatal Conditions That Cause Major Mortality and Morbidity . . . . . . . . . . . . . . . . . . . . . . . .

Respiratory Distress Syndrome. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Intraventricular Hemorrhage. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Retinopathy of Prematurity. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

CHAPTER 4: FINANCING NEONATAL INTENSIVE CARE . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Reimbursement Practices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Medicaid . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Policies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Expenditures for Neonatal Intensive Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

CHAPTER 5: ACCESS TO NEONATAL INTENSIVE CARE . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Level 11 Hospitals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Concentration of Births in Level III Hospitals . . . . . . . . . . . . . . . . . .

Barriers to Maternal and Neonatal Transport . . . . . . . . . . . . . . . . . .

The Tiniest Babies. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

CHAPTER 6: ECONOMIC ANALYSIS OF NEONATAL INTENS

Introduction . . . . . . ..., . . . . . . . . . . . . . . . . . ..., ..., . . . . .

Cost-Effectiveness and Cost-Benefit Studies . . . . . . . . . . . . . . . . . . . . .

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

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

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

VE CARE . . . . . . . . . . . . . .

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

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

Conclusions and Policy Implications. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

APPENDIX A: GLOSSARY OF ACRONYMS AND TERMS . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

APPENDIX B: ACKNOWLEDGMENTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

REFERENCES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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(Continued on next page)

vii
CONTENTS—continued

Box

B o x Page

A. How To Interpret the Data in Tables 3, 4, and 5. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

Figures

Figure No. Page

1. Hospital Cost by Birthweight Group, 1984 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

2. Outcomes for Very Low Birthweight Infants ( < 1500 grams) Born in Level III Hospitals,

1960-85 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30

3. Outcomes for Extremely Low Birthweight Infants (=1000 grams) Born in Level III

Hospitals, 1960-85 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31

Tables

Table No. Page

1.

2.

3.

4.

5.

6.

7.

8.

9.

10.

11.

12.

13.

14.

15,

16.

17.

Supply of NICUs and Beds in the United States, 1983 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

NICU Days of Care and Occupancy in the United States, 1983 . . . . . . . . . . . . . . . . . . . . . . . . 13

Length of Stay by Birthweight Group, 1984 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

Hospital Cost by Birthweight Group, 1984 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

Hospital Cost and Length of Stay Per Very Low Birthweight Survivor, 1984 . . . . . . . . . . . . 16

Hospital Cost and Length of Stay for Newborns Requiring Assisted Ventilation, 1984 . . . . 17

Comparative Neonatal Mortality for Very Low Birthweight Infants Born in Level III

Hospitals, 1975-85 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23

Comparative Neonatal Mortality in NICUs for Very Low Birthweight Infants,

1975-85 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24

Inborn Neonatal Mortality Rates for Very Low Birthweight Infants,

Pooled Institutional Data . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25

Handicap Rates in Infants With Birthweights Under 800 Grams, 1975-85 . . . . . . . . . . . . . . . . 27

Handicap Rates in Infants With Birthweights Between 750 and 1000 Grams, 1975-85 . . . . . 28

Handicap Rates in Infants With Birthweights Between 1000 and 1500 Grams, 1975-85 . . . . 29

Medicaid Recipients in Neonatal Intensive Care Units, and Medicaid Expenditures,

Selected States, 1983-85 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44

Regional Neonatal Mortality Rates for Very Low Birthweight Infants, 1976-81 . . . . . . . . . 47

Concentration of Births of Infants Weighing Less Than 1500 Grams

in Level 111 Hospitals . . . . . . . . . . . . . . 51

Measures of Economic Evaluation of Neonatal Intensive Care for Very Low

Birthweight Infants (5 Percent Discount Rate), 1984 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 58

Cost of Neonatal Intensive Care Per Additional Survivor, 1984 . . . . . . . . . . . . . . . . . . . . . . 59
Chapter 1

Summary and Conclusions
Chapter 1

Summary and Conclusions

INTRODUCTION

Neonatal intensive care is defined by the American Academy of Pediatrics as the constant and

continuous care of the critically ill newborn (2).

Although modern, high-technology neonatal intensive care units (NICUs) are a relatively recent

innovation, their widespread application has already played a major and definitive role in the

improved survival of low birthweight and premature infants (25). Despite this success, ethical and

economic concerns remain about this technology.

Because of intensive care, some infants, who previously would have died, survive but with serious and permanent handicaps. The double-edged

sword of technology, at ever-increasing costs,

both saves and disables babies. This case study

reviews the evidence on the effectiveness of neonatal intensive care and addresses a number of

these related issues:

●

●

●

●

●

●

What are the chances of serious handicap

among surviving very low birthweight infants as mortality declines?

What changes in technology and medical

practices are and will affect the chances for

survival and good developmental outcome?

How are decisions made about treatment for

extremely premature infants who are at the

edge of viability?

How much does neonatal intensive care cost?

Who pays for treatment, and are there problems with reimbursement?

Is there unequal access to neonatal intensive

care? What are the barriers that may prevent

entry for some babies?

What are the long-term economic consequences of providing neonatal intensive care?

Scope of the Case Study

Up to half of all patients in neonatal intensive

care are normal birthweight infants with congenital anomalies, pneumonia, or other problems.

However, this case study limits discussion to low

birthweight infants ( <2500 grams) for several reasons. First, low birthweight infants, particularly

Photo credit: March of Dimes Birth Defects Foundation

those with birthweights below 1500 grams, are at

the greatest risk for high mortality and morbidity.

Moreover, outcomes are changing most rapidly

for these infants, and new technologies currently

under investigation hold promise for continuing

improvements in the future. Second, there appears

to be a shift in the patient population in neonatal

intensive care, with increasing numbers of beds

occupied by extremely low birthweight infants.

Difficult ethical, social, and economic judgments

are involved in the decision to treat these infants.

Finally, because low birthweight and low socioeconomic status are associated, it is likely that

public payment programs pay a substantial portion of the expense for neonatal intensive care.

Throughout this case study, the term “low

birthweight infant” is used to refer to infants who

weigh less than 2500 grams at birth.1 “Very low

birthweight infant” refers to infants with birthweights of less than 1500 grams, and “extremely

low birthweight infant” describes infants who are

born weighing less than 1000 grams. Gestational

age is likely more important than birthweight in

determining outcome, but the two are highly correlated. Birthweight is easier and more reliable to

‘For ease of reference, 2500 grams is approximately 5 lb 5 OZ; 1500

grams is about 3 lb 3 OZ; and 1000 grams is about 2 lb 2 oz.

3
4

measure, and most of the medical literature and

available data focus on birthweight alone. That

bias is reflected in this review.

Under the regionalization concept first introduced in the mid-1970s, the most sophisticated neonatal intensive care is provided in so-called Level

111 hospitals. Level II hospitals also provide intensive care services but lack some of the components and expertise of Level III units, while

Level I hospitals provide only normal newborn

care. The extent to which high-risk mothers and

infants are referred to and treated at the appropriate level of care is addressed in this study.

Organization of the Case Study

Findings and conclusions about the costs and

effectiveness of neonatal intensive care are summarized in the remainder of chapter 1. Chapter

SUMMARY

Supply, Use, and Costs

Between 150,000 and 200,000 infants (4 to 6

percent of all newborns) are treated annually in

NICUs, and at least one-half of them are low

birthweight infants. Confusion over which hospitals deliver the most intensive v. less specialized care complicates estimates of the supply of

neonatal intensive care. Of a total of 534 combined Level II and Level 111 neonatal intensive care

units in the country, about 420 of them offer very

sophisticated Level III services. While many individual neonatal intensive care units are filled to

overcapacity, there does not appear to be a shortage of NICUs or intensive care beds nationwide.

In 1983, the occupancy rate for NICUs was 73 percent, comparable to the national occupancy rate

for all hospital beds.

Neonatal intensive care for very low birthweight infants ranks among the most costly of all

hospital admissions. Although the average hospital cost for low birthweight infants ranges from

only $12,000 to $39,000, the distribution of costs

among patients in the neonatal nursery is highly

skewed. A few infants incur truly extraordinary

2 inventories the national supply of neonatal intensive care units and describes recent trends in

use and costs. Chapter 3 reviews mortality and

handicap rate: over time and discusses the outlook for the three clinical problems that account

for a majority of the deaths and poor outcomes

among very low birthweight infants (respiratory

distress syndrome, intraventricular hemorrhage,

and retinopathy of prematurity). Problems in

financing neonatal intensive care, with special emphasis on Medicaid policies and expenditures, are

reviewed in chapter 4. Then, findings of unequal

mortality risks in different types of hospitals are

reviewed, and possible inequities in access to neonatal intensive care are considered (ch. 5). Competitive and financial constraints on hospitals and

physicians, as well as ethical considerations, are

explored. Finally, chapter 6 analyzes the lifetime

economic implications of neonatal intensive care

for very low birthweight infants and for society.

costs. About half of the variation in costs is explained by four risk factors: birthweight, survival

to hospital discharge, use of assisted ventilation,

and surgical intervention. A primary predictor of

cost is birthweight; costs increase as birthweight

falls. The average cost for a very low birthweight

survivor is from $31,000 to $71,000. The tiniest

infants who survive, those with birthweights under 750 grams, have the longest average hospital

stays, about 98 days, and the highest costs, averaging $62,000 to $150,000. Hospitals report increasing numbers of these tiniest babies in their

NICUs. (About 8,500 infants weighing less than

750 grams are born each year in the United

States. )

Mortality and Morbidity

Neonatal intensive care, along with improved

obstetrical practices, is in large part responsible

for the remarkable decline in birthweight-specific

neonatal mortality rates over the past 25 years.

Neonatal mortality for infants with birthweights

of 1000 to 1500 grams has fallen from more than

50 percent to only 10 percent. And whereas more

than 90 percent of all infants weighing under 1000
5

grams died in 1960, the neonatal mortality rate

for this group now is about 50 percent. This

achievement reflects improvements primarily in

the 750- to 1000-gram birthweight group (more

than two-thirds survive today), because mortality in the smallest and most premature infants,

those under 750 grams, is still very high.

Even among the most sophisticated neonatal intensive care centers, the risk of mortality for very

low birthweight infants varies substantially. In the

mid-1980s for example, the mortality rates reported for the most vulnerable group, infants with

birthweights under 750 grams, varied from 28 percent in one university-affiliated center, to 53 percent in another, and 74 percent in a third center.

The success of some centers indicates that the technology of neonatal intensive care is changing very

rapidly.

The rate of serious long-term disability increases

with decreasing birthweight, but within each

birthweight group, the proportion of NICU survivors who have serious handicaps has not changed

significantly since the introduction of neonatal intensive care. Because many very sick newborns

who previously would have died are now surviving, an increasing rate of handicap might have

been expected. OTA concludes that neonatal intensive care has contributed to improved longterm developmental outcomes for premature infants. The great decline in mortality among all

subgroups of very low birthweight infants over

the last 10 years, however, means there are now

larger absolute numbers of both seriously handicapped and normal survivors. For every 100 very

low birthweight infants treated in today’s NICUs,

about 27 will die before hospital discharge, 16 will

be seriously or moderately disabled, and 57 will

be normal children, though some will develop

mild learning disabilities.

The majority of deaths in the extremely low

birthweight group are attributable to respiratory

distress syndrome (RDS) or intraventricular hemorrhage. The incidence of both these clinical problems, -as well as the incidence of retinal disease,

increases with progressively lower birthweights.

About half of all very low birthweight infants

have RDS, and one-third have brain hemorrhages.

Infants with severe hemorrhage have both high

mortality and, for those who survive, a high rate

of later neurodevelopmental disability. Retinal

disease, which is almost entirely restricted to very

low birthweight infants, causes blindness in about

1 percent of infants with birthweights between

1000 and 1500 grams and in about 5 to 11 percent of infants with birthweights below 1000

grams.

RDS is the most common problem in the neonatal nursery, and assisted mechanical ventilation

is usually essential to help babies in respiratory

distress breathe. But the use of assisted ventilation is correlated with both intraventricular

hemorrhage and the development of chronic lung

disease. One-third of very low birthweight survivors have chronic lung disease at 1 month of

age. A recent study showed that the way in which

ventilator support is medically managed may be

associated with outcome; some neonatal intensive

care centers have significantly lower rates of

chronic lung disease than others. Changing and

refining existing medical practices in NICUs could

further decrease the mortality and poor outcomes

associated with RDS and assisted ventilation.

Moreover, it is possible that several technologies could substantially prevent RDS in the future. Steroid treatment, administered to women

in preterm labor in order to accelerate fetal lung

maturation, has been available for 16 years. Despite numerous studies confirming its efficacy,

however, many obstetricians have concerns about

specific indications for use, and steroid treatment

has not been widely integrated into obstetrical

practices. The other technology, administering exogenous pulmonary surfactant into the lungs of

the newborn, is new, and the medical community

is hopeful about its potential for treating lung deficiency. Controlled clinical trials conducted to date

have demonstrated lowered risk of death and respiratory disease. It will be several more years before surfactant therapy is generally available for

premature infants.

Financing

A study in children’s hospitals (some of the

most sophisticated Level III centers) found that

neonatal intensive care is the most costly category

of service to provide, and that these hospitals suf-
6

fer their greatest financial losses from neonatal

cases. In those hospitals studied, neonates represented only 8 percent of admissions but 21 percent of all patient days and 25 percent of the hospitals’ costs.

As third-party payers, including Medicaid, increasingly move to prospective payment methods,

concerns have been raised that diagnosis-related

groups (DRGs) as currently constituted under

Medicare do not adequately reimburse hospitals’

costs in providing neonatal intensive care. As

many as half of the admissions to NICUs are classified as outliers (cases with statistically unusual

lengths of stay) under the current Medicare system. Reform of the DRG system to reflect more

accurately the true resource use of very low birthweight infants will help hospitals’ finances, but

hospitals may continue to experience revenue

shortfalls for neonatal intensive care because of

their inability in the future to shift costs as the

proportion of charge-paying patients declines.

Medicaid is generally considered a poor payer

by hospitals. The method of reimbursement and

the level of payment for neonatal intensive care

varies by State. Likewise, the proportion of Medicaid admissions, and therefore Medicaid’s importance as a payer, varies widely across institutions;

overall, Medicaid recipients account for about a

quarter of all NICU admissions. From the perspective of the Medicaid program, about 6 percent of

all newborns whose deliveries are subsidized by

Medicaid require neonatal intensive care, but this

care is so expensive that it represents about 30 percent of all Medicaid expenditures for maternity

care. Through recent legislative changes, any newborn whose mother met income requirements for

Medicaid prior to delivery is assured of at least

60 days automatic Medicaid coverage. Financial

coverage for other infants in the NICU who are

not eligible for Medicaid is sometimes available

through a variety of State and county payment

programs for the indigent.

Access

The statistics on survival and outcome that are

cited in this case study refer to infants who are

treated in the regional perinatal centers (Level III

hospitals). A number of studies document better

survival rates for very low birthweight infants

born in Level III hospitals than for those born elsewhere in the same geographic area. Moreover,

several studies go further and indicate that survival rates for very low birthweight infants born

in Level III hospitals are significantly higher than

for those infants born in either Level I or Level

II hospitals, despite transfer of sick infants after

birth. Because deaths within a short time of birth

cannot be influenced by infant transport, it may

be that very low birthweight infants are not adequately resuscitated and stabilized at birth in Level

I hospitals. Poorer survival rates in Level II hospitals were reported in only a few studies. The

Level II hospitals with poorer survival rates rarely

referred their very low birthweight patients to regional centers, and the researchers concluded that

the intermediate units could not expertly manage

the complications of low birthweight, such as respiratory failure.

Because little is known about whether high-risk

mothers and infants are actually redistributed to

the appropriate level of care, the observed gradient in mortality risk across hospital level could

indicate possible inequities in the provision of neonatal intensive care. Although the contribution

of infant transport cannot be assessed, one indication of access to intensive care is the extent to

which high-risk deliveries are concentrated in

Level III centers. All published reports indicate

that although high-risk deliveries have increasingly been moved to Level III centers over time,

there is still wide variation among geographic

areas. Rural populations, as expected, clearly have

less access to perinatal centers than urban populations, and one study showed better access to specialized care for black infants than for white

infants.

Although the extent of a possible access problem cannot be determined from existing data

sources, hospitals may have financial incentives

not to serve high-risk mothers and infants. Hospitals have no legal obligation to admit these patients even if they are perinatal centers, and some

hospitals suffer their greatest financial losses from

neonatal cases. Medicaid coverage for very low

birthweight infants does not guarantee admission,

because Medicaid is generally considered a poor

payer by hospitals. The same financial incentives

operate for physicians with regard to nonpaying
7

or partial-pay patients. Obstetricians lag behind

other specialties in the extent to which they accept Medicaid patients.

A more important barrier to treatment, however, is the unwillingness of many obstetricians

to refer high-risk maternity cases to perinatal

centers prior to delivery. The perceptions of obstetricians, many of whom substantially underestimate the potential survival of extremely low

birthweight infants, influence the management of

high-risk pregnancies and premature labors,

which, in turn, actually affects the survival of

newborns. On the other hand, once a low birthweight infant, no matter how tiny and premature,

is admitted to an NICU, aggressive treatment is

almost always assured. Neonatologists, in part in

reaction to legal liability concerns raised by “Baby

Doe” rules, are increasingly treating even the tiniest infants born at the threshold of viability. The

probability of handicap cannot be determined at

birth, and the normal outcome for a few of these

infants encourages neonatologists to push for the

unprecedented treatment of the lowest birthweight

infants.

CONCLUSIONS

This OTA case study corroborates earlier

reports concluding that neonatal intensive care is

an effective technology for the improved survival

and long-term developmental outcome of very

low birthweight infants. In the 1980s, continued

improvements in outcomes are shown in every

very low birthweight subgroup, with the greatest statistical improvement, recently, in the 750-

to 1000-gram birthweight group.

The success of neonatal intensive care does

carry a burden of increasing numbers of seriously

handicapped children, As mortality rates decline,

there are larger absolute numbers of both handicapped and normal survivors. If today’s neonatal

intensive care were provided for all very low

birthweight infants, over 15,000 normal children

who would have died in 1975 would be added to

the Nation’s population. Likewise, families and

society would face an increase of about 2,200 seriCost-Effectiveness

The incremental cost of neonatal intensive care

to produce a survivor in 1984 was $86,000 for infants with birthweights between 1000 and 1500

grams and $118,000 for infants with birthweights

below 1000 grams. The long-term economic consequences of providing neonatal intensive care to

very low birthweight infants were evaluated in

a cost-effectiveness study performed by Canadian

researchers. Projected over a lifetime, the introduction of neonatal intensive care costs $4,460 per

quality-adjusted life-year gained for infants with

birthweights between 1000 and 1500 grams and

$31,240 per quality-adjusted life-year gained for

infants with birthweights under 1000 grams. Thus,

neonatal intensive care results in both increased

survival and increased costs. Moreover, neonatal

intensive care becomes more expensive as it is employed in increasingly marginal cases. The worth

of a life saved, however, is ultimately a value

judgment involving ethical and social considerations. The results from cost-effectiveness studies

alone cannot guide decisions regarding who

should receive care.

ously handicapped infants who would not have

survived a decade ago, These individuals require

outside resources and help throughout their

lifetimes.

Neonatal intensive care is costly. While the

average hospital cost for low birthweight infants

is about $620 per day in the hospital, a few infants incur truly extraordinary costs. The cost to

society increases as neonatal intensive care is provided to the very lowest birthweight infants, but

it would be unethical and illegal categorically to

deny treatment. So far, technology cannot determine at birth which infants are doomed to severely handicapped lives. Physicians, in conjunction with parents, have traditionally grappled

with decisions about treatment for premature and

sick newborns—and they must continue to do

this.
8

The disturbing fact is that an extremely premature baby’s chances for survival and normal development are in large part determined by where

the baby is born. While moderately sized low

birthweight infants do well in Level II units, there

is a gradient in mortality risk across hospital level

for very low birthweight infants. Although the

birth of a premature infant cannot always be anticipated, there is ample evidence that a pregnant

woman at high risk should be transferred to a

Level III center prior to delivery. Very low birthweight infants should be transported to Level III

hospitals as soon as they are stabilized.

The extent of a possible problem in access to

neonatal intensive care is unknown. Regional

organization may have proceeded further in neonatal care services than in any other aspect of

medicine in this country. This regionalization has

been accomplished, in almost all States, through

the voluntary cooperation of hospitals, physicians, and maternal and child health officials.

Moreover, the optimum concentration of highrisk births in Level III centers is unknown because

of unavoidable hurdles to admission (e.g., access

to services in rural areas will always lag behind

availability in urban areas).

It does appear, however, that some high-risk

mothers and infants are not transferred to Level

III hospitals for financial reasons. It also appears

that some Level II hospitals are not appropriately

transferring high-risk women and newborns because of a desire to offer competitively a full array of services even when those services do not

meet the needs of the patients. And most importantly, surveys show that many obstetricians and

pediatricians do not have a good understanding

of the prognosis for extremely low birthweight infants; they substantially underestimate the potential for survival and normal outcome. Their management of high-risk pregnancies and births

reflects these misunderstandings.

These problems point to a need to continue to

push for further regionalization of perinatal services in the 1980s. Stronger guidance from professional associations and State health authorities

may be necessary in two areas. One is the formulation of clear recommendations on treatment

and transfer policies for infants with particular

problems and/or birthweights by level of care.

Second is the exercise of leadership in informing

obstetricians and pediatricians about current practices and outcomes in neonatal intensive care.

Even among Level III hospitals, there are substantial differences in mortality risk for very low

birthweight infants. At present, there is only suggestive evidence that variations in medical practices within institutions may lead to these differences. Differences in the organization of NICUs,

the methods of applying existing technologies, and

the use or disuse of certain technologies may all

play a part in the success of some centers. Clearly,

the technology of neonatal intensive care is changing very rapidly. The rate of diffusion of the latest

and most effective techniques and knowledge—

even among the 420 most sophisticated NICUs

offering Level III services—may not be proceeding apace with developments.

The problem of disseminating information to

medical professionals and institutions is not

unique to neonatal intensive care. The need to

share information among professionals is ongoing in all arenas of medicine. Moreover, skepticism about new ideas and techniques is healthy

in that the diffusion of technologies which are not

efficacious is at least slowed. Further research in

NICUs is definitely necessary to evaluate which

medical practices are effectively helping very low

birthweight infants. Nevertheless, the speed of

technology diffusion in neonatal intensive care is

critical because the lives and well-being of our

smallest babies may hang in the balance.
Chapter 2

Supply, Use, and Cost of

Neonatal Intensive Care
Chapter 2

Supply, Use, and Cost of

Neonatal Intensive Care

INTRODUCTION

With the evolution of perinatal medicine and

the development of associated medical technology in the 1960s, many hospitals introduced neonatal intensive care units (NICUs). Intensive care

units for adults had already been established in

most hospitals, and the similar needs of newborns

for sophisticated, intensive treatment became

apparent (15). In the United States, the primary

growth in special units for neonatal intensive care,

combining high technology and highly trained

staff, occurred in the 1970s. By 1976 the Committee on Perinatal Health] had proposed guidelines for the regionalization of maternal and

perinatal health services that included a threetiered system of hospital care (34). Level III hospitals serve as regional centers and provide the

most intensive neonatal care. Level II facilities

have many but not all components of newborn

intensive care services, and Level I hospitals provide normal newborn care with no special units

‘The Committee on Perinatal Health was a joint effort by the

American Medical Association, the American College of Obstetricians and Gynecologists, the American Academy of Family Physicians, and the American Academy of Pediatrics.

SUPPLY

The confusion over which hospitals deliver intensive v. less specialized newborn care complicates

data collection and analysis. As a definitional minimum, Level III NICUs have the capability to provide ongoing respiratory support and are staffed

by a full-time neonatologist. But today many

Level II units also have these capabilities. The true

distinction between the two levels of care may lie

with the kinds of patients treated, rather than in

equipment and staffing capabilities. Level II hospitals are more likely to provide short-term respiratory support, stabilize very sick or very preterm patients, and then refer more complicated

for the care of seriously ill infants. The concept

of regionalization is that high-risk mothers and

infants are screened and referred or transported

to the appropriate level of care. Success depends

on the coordinated relationship among hospitals

in the system.

Despite these guidelines, recommendations published by the American Academy of Pediatrics in

1977 (2), and guidelines jointly issued by the

American Academy of Pediatrics and the American College of Obstetricians and Gynecologists

in 1983 (4) outlining the responsibilities and requirements of the three hospital levels, there is

no standard national application of what constitutes Level II or Level III care (25). Some States

evaluate each hospital’s perinatal services and assign levels. In other States, the regional system

is informal, and each hospital classifies its own

services. An earlier study by OTA on neonatal

intensive care identified only four States in 1978

that forced adherence to specific standards

through licensure or certificate-of-need authorities

(25),

cases, especial

111 units (144)

y those requiring surgery, to Level

Because of these ambiguities, most inventories

group Level II and Level III hospitals together. Table 1 presents the most recent estimate of the combined number of Level II and Level III units identified by the National Perinatal Information

Center in a survey of hospitals offering perinatal

and neonatal special care. The reported 1983 totals of 534 NICUs and 7,684 NICU beds represent a nationwide increase of 3 percent in available neonatal intensive care beds and a decrease

11
12

Photo credit: Children's Hospital National Medical Center, Washington, DC

Level Ill hospitals provide the most sophisticated

intensive care for newborns.

of 13 percent in the number of NICUs since an

earlier OTA assessment estimated the number of

units and beds in 1978 (25). To illustrate the confusion over definitions, Ross Laboratories, which

initially surveyed hospitals in 1978 and then informally updated its inventory, lists more than

twice as many Level II and Level III hospitals

(1,137) on its 1986 roster (138). In part, this difference is accounted for by the inclusion in the Ross

UTILIZATION

Table I.—Supply of Neonatal Intensive Care Units

(NICUs) and Beds in the United States, 1983

Number of Number of

Region hospitals NICU beds

Northeast . . . . . . . . . . . . . . . 100 1,622

South Atlantic . . . . . . . . . . . 81 1,003

North Central . . . . . . . . . . . . 135 2,391

South Central . . . . . . . . . . . . 92 1,218

West . . . . . . . . . . . . . . . . . . . 122 1,413

Other . . . . . . . . . . . . . . . . . . . 4 37

Total . . . . . . . . . . . . . . . . . 534 7,684

SOURCE: National Perinatal Information Center, unpublished data from the

American Hospital Association’s 1983 Annual Survey of Hospitals,

Providence, Rl, December 1986.

Laboratories’ inventory of military hospitals and

all special care units for newborns. It is also likely

that the National Perinatal Information Center

underestimates the number of Level II units, but

the magnitude of the difference is still unexplained.

The actual number of Level 111 units, fully

staffed by neonatologists and capable of providing the most sophisticated prolonged life support,

is probably close to 420. About 485 hospitals reported that they had NICUs in 1983 on the American Hospital Association’s Annual Survey of

Hospitals, but further investigation by the National Perinatal Information Center refined that

figure to about 420 (144). Through interviews

with maternal and child health officials and other

experts in the field, some hospitals were dropped

from the list while others were added.

Even Level III hospitals have varying capabilities. Forty children’s hospitals have NICUs. These

children’s hospitals, along with many university

hospitals, tend to provide the most sophisticated

neonatal intensive care, often in conjunction with

specialized pediatric surgery, Neonatologists

sometimes refer to these centers as Level IV hospitals.

Again reflecting data from Level II and Level cupancy by geographic area, with the North Cen111 units combined, table 2 shows that infants tral region reporting only a 65-percent occupancy

spent over 2 million days in NICUs in 1983, main- rate and the Northeast and the Western regions

taining an average NICU occupancy rate of 73 each reporting an 80-percent occupancy rate. As

percent. There was considerable variation in oc- the national occupancy rate for all hospital beds
13

Table 2.—Neonatal Intensive Care Unit Days of Care

and Occupancy in the United States, 1983

Occupancy

Region Patient days (percent)

Northeast . . . . . . . . . . . . . . 471,395 80

South Alantic . . . . . . . . . . . . 277,582 76

North Central ., . . . . . . . . . . 569,545 65

South Central . . . . . . . . . . . . 300,771 68

West . . . . . . . . . . . . . . . . . . . 411,961 80

Other . . . . . . . . . . . . . . . . . . . 8,468 63

Total . . . . . . . . . . . . . . . . . 2,039,722 73

SOURCE National Perinatal Information Center, unpublished data from the

American Hospital Association’s 1983 Annual Survey of Hospitals,

Providence, RI December 1986

was 76 percent in 1983, the widely expressed concern that NICU beds are filled to overcapacity was

not substantiated by these data (5). Of course, the

experience of individual neonatal intensive care

units varies widely, and some NICUs do report

regular over-utilization (47,143).

The number of admissions to NICUs, and therefore the average length of stay, is not available

from national databases. Based on total patient

days and average lengths of stay reported by several groups of Level III centers (see table 3), OTA

estimates that between 150,000 and 200,000 infants are admitted annually to neonatal intensive

care units, or between 4 to 6 percent of all

newborns.

Between 50 and 80 percent of all admissions to

NICUs are low birthweight infants; there is considerable variation across centers (110,130,186).

While the proportion of infants born weighing between 1500 and 2500 grams has decreased somewhat relative to total births over the last 10 years

(currently 5.5 percent of all births), the proportion of very low birthweight infants has increased

slightly (170). About 39,000 very low weight infants are born annually (a little more than 1 percent of all births), and virtually all of them require

neonatal intensive care. In 1984, almost 17,000

of the very low birthweight infants weighed less

than 1000 grams at birth.

Individual Level III centers report a trend

toward increasing admissions of infants weighing under 1000 grams. Whereas these extremely

low birthweight infants may have constituted 5

or 6 percent of admissions in the 1970s, in the

1980s they represented 10 to 12 percent and even

29 percent of all admissions to the NICU (48,87,

126,129,186). At least one report also documents

a shift in the distribution of birthweights within

the under 1000-gram birthweight group. From

1974 to 1983 at the University of Alabama in Birmingham, the proportion of admissions in the

501- to 700-gram category nearly doubled while

the proportion of admissions in the 901- to 1000-

gram group decreased (57).

Information on length of stay by birthweight

category is shown in table 3. The average length

of stay in 1984 for all sick newborns in those

Table 3.–Length of Stay by Birthweight Group, 1984

Average length of stay (days)

Maryland Children’s San Francisco

Birthweight (grams) Level Ill hospitals hospitals Level Ill hospitals

< 750 . . . . . . . . . . . . . . . . 39.2 57.7 40.8

751-1000 . . . . . . . . . . . . . . . . . . . . . . . 65.3 59.1 56.3

1001-1500 . . . . . . . . . . . . . . . . . . . . . . . 46,4 45.4 41.2

1501-2000 . . . . . . . . . . . . . . . . . . . . . . 21.1 25.0 17.9

2001-2500 . . . . . . . . . . . . . . . . . . . . . . . 7,8 16.6 10.0

>2500 . . . . . . . . . . . . . . . . . . . . . 4,4 11.3 8.4

Total < 1500 . . . . . . . . . . . . . . . . . . . . . 49.1 50.4 44.9

Total < 2500 . . . . . . . . . . . . . . . . . . . . . 23,8 31.6 29.5

Total all infants . . . . . . . . . . . . . . . . 10.3 17.1 18.8

aln Maryland’s Seven hospitals with Level III Neonatal Intensive Care Units (N ICUS), includes all newborns who fall into the

major dlagnosttc category (M DC) for neonates, MDC 15, excluding normal newborns.

bln a sample of IQ children’s hospitals. Includes all neonates admitted under age 28 days, except normal newborns and In.

fants who died or were transferred within 24 hours of birth The latter are tncluded in the total for all Infants

C

ln two San Francisco hospitals with Level Ill NICUS tncludes all Infants adm!tted to the NICUS

SOURCES Information Service Center, Inc Baltimore, MD, unpublished data, prepared under contract with the Of ftce of Tech.

nology Assessment Ju Iy 1986, N at!onal ASSOCI atlon of Children Hospttals and Related Institutions, Inc , Alexan.

drla VA, unpublished data, August 1986 and C S Phlbbs, Untvers!ty of Call fornla, San Diego, unpublished data,

March 1987
14

centers reporting data ranged from 10 to 19 days

while the average length of stay for very low

birthweight infants ranged from 45 to 50 days.

As expected, the length of hospital stay increases

as birthweight decreases. For extremely low birthweight

COST

infants under 1000 grams who survive to

Neonatal intensive care is expensive, ranking

among the most costly of all hospital care.2 Average hospital costs for low birthweight babies in

1984 ranged from $11,670 to $39,420 (see table

4). 3 Among 10 diagnoses studied by Showstack

‘The costs for physicians’ services in NICUs are not reflected in

this section because data on physician charges were unavailable.

Estimates vary, but physicians’ charges probably raise overall medical care charges by about 15 percent (79,128). Typically, neonatologists charge a daily visit fee for each patient in the NICU and

additionally bill all procedures, such as catheterization, separately.

Other consulting physicians also charge for their services. With the

extremely long hospital stays of most very low birthweight infants,

physicians’ charges can become a substantial liability for patients’

families.

‘The three data sources in tables 4 and 5 show such a wide range

in hospital costs in part because they report on different populations. The data from the Maryland and children’s hospitals include

all newborns who are hospitalized (except normal newborns), while

the data from the San Francisco hospitals include only NICU admissions. Because the majority of the larger low birthweight infants

hospital discharge, it takes at least 70 to 90 days

in the hospital to reach the necessary size and

maturity so that continuous professional nursing

care is no long required (see table 5). The implications of other risk factors for length of stay are

discussed n the following section on costs.

and his colleagues, infants with respiratory distress syndrome (a major problem among premature, low weight babies) had substantially higher

hospital charges than any other group, including

patients with acute myocardial infarction or kidney transplantation (154). The costs for the sickest and tiniest infants in neonatal intensive care

rank with the most expensive medical procedures

that are performed today, like cardiac or bone

marrow transplantation (96,145).

The distribution of costs among patients in the

neonatal care nursery is highly skewed. A significant portion of the variation among infants in

(those with birthweights between 1500 grams and 2500 grams) do

not require intensive care, the cost data for these birthweight categories, although reflecting average hospital costs, underestimate

NICU costs. Box A provides a full explanation of the databases and

their limitations.

Table 4.—Hospital Cost by Birthweight Group, 1984

Average hospital cost s

Maryland San Francisco

Birthweight (grams) Level Ill hospitals Children’s hospitals Level Ill hospitals

< 750 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . $25,069 $48,773 $58,053

751-1000 . . . . . . . . . . . . . . . . . . . . . . . . . . . 38,750 47,068 76,387

1001-1500 . . . . . . . . . . . . . . . . . . . . . . . . . . 22,266 32,530 53,663

1501-2000 . . . . . . . . . . . . . . . . . . . . . . . . . . 8,594 16,370 20,845

2001-2500 . . . . . . . . . . . . . . . . . . . . . . . . . . 2,898 13,794 16,751

>2500 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1,202 9,358 14,601

Total < 1500 . . . . . . . . . . . . . . . . . . . . . . 26,737 38,171 60,015

Total < 2500 ... , . . . . . . . . . . . . . . . . . . 11,666 23,639 39,421

Total all infants . . . . . . . . . . . . . . . . . 4,411 13,416 26,946

aln Ma~yla”d,~ ~even hospitais with Level III Neonatal Intensive Care Units (N ICUS), includes all newborns who fall into the major diagnostic cate90W (MW for neonates, MDC 15, excluding normal newborns. Charges are converted to costs through a weighted cost-to-charge ratio derived from the Maryland Health Services Cost

Review Commission’s ratios for individual hospitals and their relative contribution to total births.

bin a sample of 13 children’s hospitals, includes all neonates admitted under age 28 days, except normal newborns and iflfantS who died or were transferred within

24 hours of birth (The latter are included in the total for all infants.) Costs are derived from a cost finding methodology employed by National Association of Children’s

Hospitals and Related Institutions and adjusted for labor differentials.

Cln two San Francisco hospitals with Level III Nlcus, includes all infants admitted to the NICIJS, Charges are adjusted to costs using Medicaid’s cost-to-charge MiO.

SOURCES: Information Service Center, Inc., Baltimore, MD, unpublished data, prepared under contract with the Office of Technology Assessment, July 1988; National

Association of Children’s Hospitals and Related Institutions, Inc., Alexandria, VA, unpublished data, August 1988; and C.S. Phibbs, University of California,

San Diego, unpublished data, March 1987.
15

Box A.—How To Interpret the Data in Tables 3, 4, and 5

Tables 4 and 5 show such a wide range of costs because the three data sources that are cited report

on somewhat different populations. The seven Level III hospitals in Maryland have the lowest costs. These

data include all infants born in the hospitals who are assigned to the diagnosis-related groups (DRGs) for

neonates (excluding normal newborns). Because of inconsistencies in coding, these data may include some

infants older than 28 days who return to the hospital for routine surgical corrections of congenital anomalies and may exclude some seriously ill newborns who are assigned to non-neonate DRGs that describe

the organ system involved with their problems (109). Any newborn weighing less than 2500 grams is included in this classification because of his low birthweight, regardless of the extent of medical problems.

Thus especially in the heavier low birthweight groups, the Maryland data underestimate NICU costs because many of the babies, though hospitalized, are not sick enough to warrant intensive care.

Conversely, the other 2 data sources, 13 children’s hospitals and 2 university-affiliated San Francisco

hospitals, tend to overestimate average NICU costs. Most children’s hospitals do not have obstetrical services, and they typically serve as super-referral centers for the most difficult and complicated cases, often

those requiring complex surgery. They, along with many university hospitals, are sometimes referred to

as Level IV facilities because their caseloads require such intensive care. These data sources reflect average

costs for the sickest infants.

There are several additional caveats about these data. The data from the children’s hospitals include

all admissions of infants under 28 days of age, but like the Maryland data, it is not known which infants

actually received care in the intensive care unit. For example, very complicated surgical patients with congenital problems often are placed in pediatric intensive care units instead of NICUs even if they are newborns. And because children’s hospitals are almost exclusively referral centers, many of the babies return

to their original hospitals after surgery or to complete recuperation. Such transfer policies underestimate

true lengths of stay and concomitant costs for these newborns.

The two San Francisco hospitals constitute the only data source that reports only on infants admitted

to the NICU. Thus it is the best source of information on the cost experience of the heavier birthweight

infants (over 1500 grams) in NICUs. However because one of these hospitals is also a surgical center for

infants with congenital anomalies, these data may overestimate typical NICU costs for the larger infants.

Moreover, the same hospital has an aggressive program for back-referring infants to their originating hospitals which explains, in part, the generally shorter lengths of stay reported by the San Francisco hospitals

compared with the children’s and Maryland hospitals. Finally this database is limited by the size of the

population. The San Francisco hospitals had a total caseload of 580 infants while the Maryland hospitals

and the children’s hospitals each report on over 5,000 infants. There were 290 low birthweight infants in

the San Francisco hospitals. The Maryland hospitals had 1,540 infants and the children’s hospitals had 2,240

infants in their low birthweight populations.

cost and length of stay is explained by four meas- these factors plus two others: multiple births and

ures of risk: birthweight, survival to hospital discharge, assisted ventilation, and surgical intervention (109,13 o). A study on costs in 13 children’s

hospitals conducted by the National Association

of Children’s Hospitals and Related Institutions

in 1984 found that these factors explained 45 percent of the variation in costs among neonatal cases

when the extreme outliers were removed from the

calculation (111). A different study of admissions

to six Level 111 NICUs in California found 42 percent of the variation in costs was explained by

discharge to another hospital (130).

Birthweight has the greatest explanatory power.

Costs increase as birthweight falls. The average

hospital costs for very low birthweight babies

range from $26,740 to $60,015. (See table 4.) Infants in the 750- to 1000-gram birthweight group,

which uses resources very intensively, have average costs between $38,750 and $76,390. The average hospital costs for infants with birthweights

below 750 grams are lower than the average costs
16

for those infants in the 750- to 1000-gram group

because so many of the tiniest babies die within

a short time of birth, thus incurring fewer expenses

(figure 1).

If only survivors are counted, costs increase

across birthweight groups. (See table 5.) Because

of the high mortality experienced at the lowest

birthweights, survival to discharge is the most important factor in explaining variations in costs for

infants with birthweights under 1500 grams. A

large percentage of these premature newborns die

within a very short time after birth and consume

minimal resources. Another substantial portion

of the infants live past the first critical 24 to 72

hours and consume considerable resources, but

eventually die. The children’s hospital data indicate that even if only this latter group, infants who

use resources intensively but ultimately die, is considered, on average survivors are still more expensive (109). As expected, the tiniest infants who

survive, those with birthweights from 500 to 750

grams, have the highest costs and hospital stays,

from $61,700 to $149,180 and from 87 to 109 days

respectively.

Table 6 shows costs and lengths of stay for newborns who require assisted ventilation for more

than 72 hours. Unfortunately, virtually all infants

born weighing under 750 grams and most infants

in the 750- to 1000-gram birthweight group do require prolonged respiratory assistance. Only 15

percent of the under 1000 gram survivors shown

in table 6 did not require assisted ventilation. The

average costs of these nonventilated extremely low

Figure 1.— Hospital Cost by Birthweight Group, 1984

$80,000 r 76,387

$70000 I

$10,000

n t

547053

53,063

< 750 751.1000 1001-1500

Grams

Hospitals

SOURCE: Office of Technology Assessment (see table 4), 1987.

birthweight survivors are only a third of the

$63,750 required to care for the infants on assisted

ventilation. For all low birthweight babies, average hospital costs increase almost fourfold, from

$11,470 to $40,550, if assisted ventilation is required. The use of assisted ventilation over 72

hours explains between 20 and 36 percent of the

variation in costs among infants who weigh less

than 1500 grams (109). For the heavier low birthweight babies, those in the 1500- to 2500-gram

group, the most important explanatory factor is

whether surgery is required. About 12 percent of

the variation in costs among cases is explained by

surgical intervention (109).

Table 5.—Hospital Cost and Length of Stay Per Very Low Birthweight Survivor, 1984

Maryland Level Ill San Francisco children’s

hospitals hospitals Level Ill hospitals

Birthweight (grams) ALOSd Mean $ ALOSd Mean $ ALOSd Mean $

> 750 . . . . . . . . . . . . . . . . 97.9 $61,706 87.4 $67,892 108.5 $149,184

751-1000 . . . . . . . . . . . . . . 86.2 48,290 71.4 54,805 66.4 88,028

1001 -1500 . . . . . . . . . . . . . 48.5 21,848 47.3 32,168 44.8 56,276

Total . . . . . . . . . . . . . . . 61.5 31,426 56.3 40,514 55.1 71,417

aln Maryland,s seven ho~~ita[s ~lth Level III Nlcus, in~l”des all newborns Who fall into the major diagnostic catego~ (MDC) for neonates, MDC 15, excluding normal

newborns

bln a sample of 13 children’s hospitals includes all neonates admitted under a9e 28 days, excePt normal newborns.

cln two San Francisco hospitals with Level Ill NICUS, includes all infants admitted to the NICUS.

dALOS denotes average length of stay (days).

SOURCES Information Service Center, Inc., Baltimore, MD, unpublished data, prepared under contract with the Office of Technology Assessment, July 1986; National

Association of Children’s Hospitals and Related Institutions, Inc., Alexandria, VA, unpublished data, August 1986, and C.S. Phibbs, University of California,

San Diego, unpublished data, March 1987
17 —

Table 6.—Hospital Cost and Length of Stay for Newbornsa

Requiring Assisted Ventilation, 1984

Assisted ventilation No assisted ventilation

Birthweight (grams) Mean $ ALOS C Mean $ ALOSC

< 1000 . . . . . . . . . . . . . . , .

1001-1500 . . . . . . . . . . . . . . .

1501-2000 . . . . . . . . . . . . . . .

2001-2500 . . . . . . . . . . . . . . .

>2500 . . . . . . . . . . . . . . . . . .

Total < 1500 . . . . . . . . . . . . .

Total < 2500 . . . . . . . . . . . . .

Total all infants . . . . . . . .

$63,753

40,055

47,951

23,233

29,112

49,295

40,548

35,322

79,2

53.9

49.6

23.2

27.7

63.8

49.4

39.5

$22,694

17,732

11,364

8,709

5,383

18,559

11,474

6.555

50.5

35.2

23.1

13.0

8.0

37.8

20.4

10.4

aDataex~lude~ normal newborns, Infants transferred to anotherhospltal within 4daysof birth, and all mfantswhodled before

discharge

blnfants required mechanlca[ venttlatlon forover3 days

CA LOS denotes average length of stay (days)

SOURCE National Association of Children’s Hospitals and Related Institutions, Inc., Alexandra. VA, unpublished data, August 1986

More of the increase in the costs of neonatal

intensive care over time is due to a sicker case mix

than to the use of more services or general inflation. In comparing admissions to the NICU at the

University of California, San Francisco between

1976-78 and 1983-84, Phibbs and his colleagues

found that mean charges increased from $6,230

to $25,230. The cost to treat similar types of cases

increased 30 percent, and this change was attributed to technology and higher prices. Inflation accounted for another 23 percent, and the

remaining 47-percent increase in overall charges

was attributed to a change in the kinds and severity of cases (94). The caseload in this Level III

nursery became much more concentrated with extremely low birthweight infants and with infants

who required complex surgery than in earlier

years. The researchers hypothesized that the sicker

case mix was caused by increased regionalization

and greater availability of Level II beds (94).

Other researchers in the same institution followed the hospital course of infants with respiratory distress syndrome as part of a larger study

of costs and changes in clinical practice. They

found that between 1972 and 1982 resource use

increased more for infants with respiratory distress syndrome than for any of the other nine diagnoses studied. They concluded that these newborns received increasing quantities of services

over the decade and that the most difficult costs

to contain are those for such critically ill patients

(154).
Chapter 3

Effectiveness of Neonatal

Intensive Care
Chapter 3

Effectiveness of Neonatal Intensive Care

INTRODUCTION

The remarkable decline in infant and neonatal

mortality in this country since 1960 is chronicled

in the OTA assessment, Healthy Children: Investing in the Future (170). Neonatal mortality rates

(deaths during the first 28 days of life per 1000

live births) are affected by both birthweight distribution and birthweight-specific mortality rates.

Assuming that better neonatal and obstetrical care

imply improved outcomes for infants at a given

birthweight while shifts in birthweight distribution toward heavier babies can be attributed to

improved prenatal care and maternal health and

nutrition, the concern in this case study is the

direction of the birthweight-specific mortality

rates.

Improvements in the birthweight-specific mortality rates accounted for 91 percent of the overall decline in neonatal mortality between 1960 and

1980 (27). Moreover, two-thirds of the decline in

birthweight-specific neonatal mortality resulted

from improved survival of low birthweight infants. Decreases in the mortality rates of infants

weighing between 1500 and 2500 grams contributed more than any other weight group, including the very low birthweight group, because of

both greater proportional decreases and higher

absolute declines in mortality (184). In reviewing

perinatal mortality rates by birthweight between

1960 and 1977 in California, Williams and Chen

concluded that much of the decline could be atMORTALITY RATES

Birthweight-specific death rates on a national

basis are not available for trend analysis because

not all States routinely link birth certificates

(where birthweight is noted) with death certificates. However, many individual Level III centers

report their experiences in the medical literature.

Because the mortality rates for infants born in the

Level III hospitals are lower than the mortality

tributed to the advent of neonatal intensive care

(as well as the increased rate of cesarean section)

(184).

The effectiveness of neonatal intensive care

must be measured not only by whether more lives

are being saved but also by whether the long-term

health outcome for the babies and their families

is good. The health status of survivors, specifically the rate of serious disability or handicap,

has been the subject of intense interest. For the

larger low birthweight infants, those with birthweights between 1500 and 2500 grams, neonatal

intensive care has been accepted as a mature and

effective technology (25,166). But because the risk

of handicap increases with decreasing birthweight,

debate continues about providing universal care

for all very low birthweight infants (151,25).

This chapter focuses on changes in mortality

and morbidity over the past 25 years for such very

low birthweight infants. Following discussions of

mortality and handicap rates, the three leading

causes of mortality and morbidity in the neonatal

intensive care unit (NICU) are examined in detail:

respiratory distress syndrome, intraventricular

hemorrhage, and retinopathy of prematurity.

These clinical problems not only account for the

majority of deaths among very low birthweight

infants, but they can also lead to substantial longterm disabilities. The outlook for technological

advances in these areas is also discussed.

rates for infants who do not have immediate access

to care in the intensive care units (see ch. 5), these

institutional reports may be the best indicator of

the impact of NICUs on mortality outcomes.

There are problems, however, in comparing

mortality results from one hospital to another because of differences in the demographic charac2 1
22

teristics of the populations served, in the standards of care, in the proportions of high-risk

pregnancies, and in the selective application or

withdrawal of intensive treatment measures (83).

Displaying the data by birthweight group does not

completely control for these differences. For example, the distribution of gestational age within

a given birthweight group is probably the most

important indicator of survival. Moreover, individual nurseries typically report on only small

numbers of infants, and mortality rates may fluctuate from year to year. Bearing in mind these

caveats, OTA reports and combines institutional

data to permit generalization about mortality rates

over time.

Table 7 summarizes reports on mortality for

very low birthweight infants born in Level III

hospitals (inborn) during the past 10 years. Table

8 is a similar compilation, but it lists studies that

report on admissions to NICUs (inborns and

transfers). The two kinds of denominator populations are reported separately for several reasons.

On the one hand, inborn populations would be

expected to have higher mortality rates because

of the high proportion of infants who die almost

immediately in the delivery room and are never

admitted to the NICU. On the other hand, while

the infants admitted to the NICU have survived

through the first critical minutes or hours of life,

the infants born in other hospitals (transfers) may

be selectively sicker because of the period of time

that they were denied intensive care before and

during transport. A study in New York City on

the effect of place of birth on mortality in fact supports both these conclusions which are further discussed in chapter 5 of this case study (119). In

OTA’s literature review, inborn populations had

significantly lower pooled mortality rates (for

1980 to 1985) than NICU populations in the 750-

to 1000-gram and the 1001- to 1500-gram birthweight groups. The differences between the two

kinds of nursery populations were not statistically

significant in the smallest babies born weighing

under 750 grams.

With one exception, there has been steady and

statistically significant improvement in mortality

rates among very low birthweight infants throughout the last 10 years. In 1985, a baby born with

a birthweight between 1001 and 1500 grams has

a 90 percent chance of surviving. The most substantial improvement of the 1980s over the late

1970s, in neonatal mortality rates is in the 751-

to 1000-gram birthweight group where today’s infants have about a 70 percent chance of surviving if they are admitted to an NICU.

The exception to the mortality decline over the

past decade is among the tiniest inborn babies,

those in the under 750 gram group, where some

extremely promising, but mostly variable, results

are reported on babies born in the 1980s.1 For this

birthweight group, Columbia University reports

only 28 percent of their inborn infants died in 1986

and the University of Missouri-Kansas City

School of Medicine shows only a 53 percent neonatal mortality rate in 1983 and 1984 (46,80).

However, other institutions which report their experiences in the 1980s show much worse mortality rates. The 1980-85 pooled results for both

denominator populations show that about twothirds of this birthweight group dies. Such wide

variation among centers may mean that the technology of neonatal intensive care is continuing to

change rapidly.

Table 9 shows the great progress that medicine

has made over the past several decades in reducing birthweight-specific mortality rates among

very low birthweight infants.2 The pooled institutional results on mortality from 1961 through 1975

are taken from an earlier OTA literature review

(25). Mortality for infants with birthweights of

1001 to 1500 grams has fallen from more than 50

percent in 1961 to only 10 percent today. And

whereas more than 90 percent of all infants weighing under 1000 grams died in 1961, the inborn neI Even for this birthweight subgroup (under 750 grams), the pooled

mortality rates calculated for NICU populations decreased significantly from 1975-80 to 1980-85.

‘It should be noted that improvements in the birthweight-specific

mortality rates may also be attributable to factors other than solely

neonatal intensive care. For example, healthier cohorts of low birthweight infants may be delivered through selective abortion, better

obstetrical techniques, improved maternal care and nutrition, and

so forth (18). It is not possible to sort through each factor’s relative

contribution, but clearly neonatal intensive care is very important.
Table 7.—Comparative Neonatal Mortality for Very Low Birthweight Infants Born in Level Ill Hospitals, 1975-85

Birthweight (grams)

501-750a

751 -1000a< 1000 1001-1 500a

Referenceb

Year of birth Deaths/births Percent Deaths/births Percent Deaths/births Percent Deaths/births Percent

Knobloch (83) . . . . . . . . . . . . . . 1975-79 — — 50/74 68 ”/0

KOOPS (85) . . . . . . . . . . . . . . . . . 1974-80 60/82 73 ”/0 49/108 45 ”/0

Phibbs (129)C . . . . . . . . . . . . . . . 1976-78 — — —

Kitchen (82)C . . . . . . . . . . . . . . . 1977-78 47/62d

760/o 30/65 d – 460/o

Nelson (1 13). . . . . . . . . . . . . . . . 1977-78 — . —

Buckwald (24)C. . . . . . . . . . . . . . 1977-81 50/90 d — 560/o — —

Hoskins (71). . . . . . . . . . . . . . . . 1979-80 20/39 51 “/0 14167 21 “/0

Pooled subtotal . . . . . . . . . . . 1975-80 1771273 65% 143/31 4 460/o

Brans (22) . . . . . . . . . . . . . . . . . . 1978-82 68177 880/0 49/105 480/o

Avery (6)C . . . . . . . . . . . . . . . . . . 1983 31/50d 62% 71/46d

15“/0

Kilbride (80) . . . . . . . . . . . . . . . . 1983-84 46/87d53 ”/0 —

Horbar (69)e . . . . . . . . . . . . . . . . 1983-84 — 88/357 d — 250/o

Hack (61)C. . . . . . . . . . . . . . . . . . 1982-85 57/77 –

74% 24173 33 ”/0

Driscoll (46)C . . . . . . . . . . . . . . . 1986 5/18d

280/o 2/21d10 ”/0

Pooled subtotal . . . . . . . . . . . 1980-85 2071309 670/o 1701602 280/o

asorne studies reported birthweight categories as 500 to 749, TSO to 999, and 1000 to Idgg 9

bsee references in the back of this case study for full citations.

cDeaths reported to hospital discharge.

dlncludes blrthwelght categories 501 to 800 g and 801 to 10009

e Repor t on multiple neonatal intensive care centers

.

SOURCE: Off Ice of Technology Assessment, 1987

— 61/21 1

109/1 90 57 ”/0 58/348

18/35 51 “/0 10/82

771127 61 0/0 33/250

220/360 61% 1221720

— — —

34/106 320/o —

458/818 560/o 284/1,611

117/182 640/o 411236

38/96 40 ”/0 13/109 — — —

— — 101/1,243

81/150 54 ”/0 30/216

7/39 180/0 1/75

2431467 520/o 186/1 ,879

290/o

17“/0

12“/0

13“/0

17“/0

—

—

180/0

17“/0

12 ”/0 —

80/0

14 ”/0

1%

10%
24

I

I I

.

I

I

.0

“ -
Table 9.—inborn

25

Neonatal Mortality Rates for Very Low Birthweight Infants,

Pooled Institutional Data

Birthweight (grams)

< 1000 1001-1500

Year of birth Deaths/births Ratea Deaths/births Ratea

1961-65 . . . . . . . . . . . . . . . . . 1851197 939 1421274 518 -

1966-70 . . . . . . . . . . . . . . . . 381/443 860b2121567 374b

1971-75 . . . . . . . . . . . . . . . . . 209/274 763b

541253 213b

1976-80 ., . . . . . . . . . . . . . . . 4581818 560b

284/1,611 176

1981-85 . . . . . . . . . . . . . . . . . 2431467 520 186/1,879 99b

aRate deaths/1,000 Ilve births

bsrgnlflcantly d! fferent from preceding 5-year rate (P <0 01)

SOURCES For years 1976.85, Off Ice of Technology Assessment (see table 7) For years 1961.75, P Budetti, P McManus N

Barrand et al , The Costs and Effectiveness of Neonatal Intensive Care (Health Technology Case Study #10), prepared for the Off Ice of Technology Assessment, U S Congress, OTA. BP-H-9 (Springfield, VA: National Technical

Information Services, August 1981)

onatal mortality rate now is about 52 percent.3

ily in the 750- to 1000-gram birthweight group

This achievement reflects improvements primar- since mortality is still very high in the smallest

‘The true neonatal mortality rate today for newborns weighing and most premature infants, those under 750

under 1000 grams who have access to neonatal intensive care is prob- grams. Neonatologists are justifiably proud of

ably closer to 47 percent, the rate shown in table 8 for NICU popu- breaking the 1000 gram barrier, and they look

lations. OTA used the 52 percent rate (from table 7 for inborn pop- now to infants weighing under 800 grams as their ulations with birthweights under 1000 grams) in table 9 to be

consistent across time and denominator populations. Several of the great challenge.

studies in table 7 showing the best survival rates for inborn populations did not report on all infants with birthweights between 500

and 1000 grams. The results of these studies could not be included

in the pooled total for infants with birthweights under 1000 grams,

and thus the 52 percent rate probably overestimates mortality,

HANDICAP RATES

When neonatal intensive care was introduced,

concern was expressed that many sick and premature infants, who otherwise would have died,

would be saved and result in a large number of

handicapped children. Early, well-publicized

studies of very low birthweight babies born in the

1940s and early 1950s, long before the era of neonatal intensive care, fueled this concern because

they showed very high rates (30 to 40 percent)

of cerebral palsy and other forms of impairment

in survivors (45,95). Two groups, Budetti and his

colleagues in their earlier OTA assessment of neonatal intensive care and a team of British researchers, independently attempted to resolve this question by reviewing published reports from hospital

nurseries that described outcomes for very low

birthweight infants who were born after 1945.

Both review articles found that the handicap rate

from the very early period dropped sharply by

the mid-1960s (possibly before neonatal intensive

care was widely introduced). Furthermore, from

the mid-1960s through about 1977, the proportion of very low birthweight survivors with serious handicaps remained stable and relatively low

(about 14 percent of survivors or from 6 to 8 percent of live births) (25,162).

These reviews were reassuring in that the introduction of neonatal intensive care apparently

had not increased the proportion of survivors who

are seriously handicapped. However, the two reviews covered mortality outcomes only for infants

born before 1977. At that time, no published data

were available on outcomes for infants with birthweights below 800 grams, perhaps because so few

such infants survived. Moreover, mortality rates

have continued to drop significantly over the last

10 years for all birthweight groups under 1500
26

grams, and the possibility exists that infants, who

previously would have succumbed because of

their problems, are now rescued through new

technology and contribute to the incidence of survivors with neurological damage. To determine

whether handicap rates have changed during the

late 1970s and the 1980s, OTA reviewed the literature for reports on morbidity outcomes for infants born between 1975 and 1985. The results are

shown in tables 10 through 12 by birthweight

group.

Like birthweight-specific mortality data,

birthweight-specific morbidity data are not collected on a routine basis in the United States. Thus

reports from individual nurseries are the only

available data source that reflects the long-term

morbidity of very low birthweight infants. All of

the shortcomings discussed previously for the institutional data on mortality hold as well in using

and pooling morbidity data from individual nurseries. Differences in the character and experiences

of the study populations yield different results.

Moreover, comparisons of morbidity are further

complicated by the different ways in which outcome is measured and reported. There are differences in the definitions of abnormalities, in the

details with which diagnostic categories are specified, in the ages at which followup examinations

are done, and in the measures used in the neurodevelopmental evaluations (78,83).

The interrelationship of mortality and morbidity is especially difficult to interpret. It is likely

that neonatologists’ attitudes and decisions concerning termination of life support for very low

birthweight infants who manifest severe neurological dysfunction are a major factor in determining the rate of serious morbidity among survivors. Thus, a comparatively high neonatal

mortality rate might be expected to be associated

with a relatively low rate of handicap. Although

several reports on the under 800-gram population

fit this hypothesis (13,60,61), just as many studies

reported relatively high survival and low handicap rates (68, 79,80, 161). Overall OTA found no

consistent relationship between mortality and the

rate of serious morbidity in its literature review,

Determinations of long-term morbidity and disability cannot be made at hospital discharge. The

extent to which researchers were able to follow

NICU survivors through the first few years of life

and classify their disabilities varied from study

to study. In general, followup rates were highest

in the studies reporting on the smallest birthweight

infants. This is because the tiniest babies are less

numerous and tend to have problems that encourage their families to seek ongoing medical care.

Conversely, a larger percentage of the NICU survivors with birthweights between 1000 and 1500

grams were lost to followup, but many of these

infants are normal. In all three birthweight groups

examined by OTA, a substantial portion of the

infants lost to followup died during the postneonatal period. Although many of the deaths

were directly related to complications of prematurity and intensive care treatment, sudden infant

death syndrome (SIDS) was also a major cause

of death after hospital discharge. The high postneonatal mortality rate experienced by very low

birthweight infants, perhaps 10 to 15 times that

found among normal birthweight infants, is not

well understood by medical researchers (170,188).

OTA adopted the definitions of handicap used

by the reviewers in the earlier OTA assessment

in order to categorize disparate reports. “Serious

handicaps” are defined as: severe mental retardation (IQ or developmental quotient below 70); cerebral palsy of significant degree (spastic diplegia, paraplegia, tetraplegia, hemiplegia); major

seizure disorders; blindness; and severe hearing

defects (25). “Moderate handicaps” are narrowly

defined to include all infants with a developmental quotient or IQ between 70 and 80. No attempt

was made in this review to capture the “mild” impairments that many very low birthweight infants

develop later in early childhood or even at school

age because most published reports follow NICU

survivors only to 2 or 3 years of age (68). It should

be noted that there is a higher incidence of such

relatively mild handicaps, which include behavioral, learning, and language disorders, in very

low birthweight infants than in normal birthweight children (116).

The incidence of serious handicap increases significantly with decreasing birthweight (tables 10

to 12). For infants born between 1975 and 1985,

OTA found that 26 percent of surviving infants

with birthweights below 800 grams, 17 percent
27

——.

“ -

. .

. .

. .

. .

. .

. .

. .

. .

. .

. .

. .

. .

. .

. .
Table 11 .—Handicap Rates in Infants With Birthweights Between 750 and 1000 Grams, 1975-85

Survivors followed after hospital discharge

Infants surviving to Children with Children with serious

hospital discharge Total serious handicaps or moderate handicaps

Reference c Year of birth Number Percent Number Percent d Number Percent e Number Percent e

Saigal (139) . . . . . . . . . . . . . . . . 1973-78 32f

(49%) 31 (97°/0) 4 (13%) 10 (32%)

Knobloch (83) . . . . . . . . . . . . . . 1975-78 — 9 5 (55%) 6 (67%)

Marlow (99) . . . . . . . . . . . . . . . . 1976-80 43 (37%) 40 (93%) 10 (250/o) NA

Orgill (118) . . . . . . . . . . . . . . . . . 1977-80 48 (59%)

—

48 (100%) 7 (15°/0) 10 (21 %)

Cohen (32) . . . . . . . . . . . . . . . . . 1977-80 84 (720/o) 72 (86°/0) 4 (6°/0) 18 (25%)

Saigal (140)g

. . . . . . . . . . . . . . . . 1977-80 76f(67%) 72 (95°/0) 13 (18°/0) 35 (49%)

Walker (180)g 

. . . . . . . . . . . . . . . 1977-81 58 (50%r) 48 (83°/0) 5 (10%) 10 (21%)

Kraybill (87)g 

. . . . . . . . . . . . . . . 1980 26 (670/o) 25 (96°/0) 3 (12%) 7 (28%)

Stewart (161) . . . . . . . . . . . . . . . 1979-83 73h

(54%) 54 (74%) 7 (13%) NA

Pollara (132) . . . . . . . . . . . . . . . . 1983-84 44 (690/o)

—

35 (80°/0) 17 (49%) NA —

Pooled total . . . . . . . . . . . . . . 1975-84 434 75 (17%) 96 (31%)f

aseriOu~ ha~di~aP~ are defined as the following: severe mental retardation (IQ Or develop~e~ta{ quotient below 70); cerebral palsy of significant degree, major Seizure disorders, Or blindness

bserious or moderate handicaps Includes all those handicaps defined above as serious PIUS a developmental CIUOtlent Or IQ between 70 and so.

csee references In the back of thts case study fOr fUll Cltatl OnS

dof those infants surviwng to hospital discharge

eof survivors followed after hospital discharge.

fsuwival calculated on regional population of bitihs.

glncludes infants with bifthweights between 500 and 800 grams

hsuwived to end of first year.

I Denominator population is 305 infants.

SOURCE Office of Technology Assessment, 1987
Table 12.— Handicap Rates in Infants With Birthweights Between 1000 and 1500 Grams, 1975-85

Survivors followed after hospital discharge

Infants surviving to Children with Children with serious

hospital discharge Total serious handicaps or moderate handicaps

Reference c Year of birth Number Percent Number Percent d Number Percente Number Percent e

Hack (62) . . . . . . . . . . . . . . . . . . 1975-76 153 (76%) 128 (84%) 20 (16°/0) NA —

Saigal (139) . . . . . . . . . . . . . . . . 1973-78 147f(83%) 131 (89%) 6 (5%) 26 (20%)

Knobloch (83) . . . . . . . . . . . . . . 1975-78 — 79 15 (19%) 28 (35%)

Sherman (152) . . . . . . . . . . . . . . 1976-77 34 (81%) 26 (76%) NA 3 (12%)

Marlow (99) . . . . . . . . . . . . . . . . 1976-80 226 (65%) 210 (93%) 27 (13%) NA

Powell (133) . . . . . . . . . . . . . . . . 1979-81 285f(73%) 276 (97%) NA 31 (11%)

Stewart (161) . . . . . . . . . . . . . . . 1979-83 227g

(82%) 168 (74%) 9 (5%) NA

Crombie (36) . . . . . . . . . . . . . . . 1979-83 108 (82%) 77 (71%) 3 (4%) 5 (6%)

Pollara (132) . . . . . . . . . . . . . . . . 1983-84 165 (85%) 120 (73%) 20 (17°/0) NA —

Pooled total . . . . . . . . . . . . . . 1975-85 1,215 100 (11%)h

93 (16%)j

lseriOu~ handlCaP~ are d~fi”ed as ~he fOll OWin Q: ~evere ~~”tal ~~ta~dat,~” (IQ ~~ de”~l~~nle”tal quotient below 70), cerebral palsy of slgnlflcant degree, ITlaJOr S(?IZUR disorders; Or bll ndness

bserlou~ or moderate handicaps in~l”des all those handiCapS defined above as serious plUS a development} quotient or IQ between 70 and 80

Csee references in the back of this case study fOr fUll citations.

dof those Infants survlvlng to hospital discharge

eof suwlvors followed after hospital dlschar9e

fsuwival calculated on regional population of births

gSuwlved to end of first year.

h Denominator population IS 913 infants.

‘Denominator population IS 589 infants.

SOURCE Off Ice of Technology Assessment, 1987
30

of survivors with birthweights between 750 and

1000 grams, and 11 percent of survivors with

birthweights between 1000 and 1500 grams have

major disabilities at 1 or 2 years of age. Of the

surviving infants with birthweights under 800

grams, 41 percent have either a moderate or severe handicap, while only 16 percent of the survivors with birthweights between 1000 and 1500

grams are so handicapped.

These results corroborate the conclusions of

Budetti and his coworkers (25). Within each birthweight group, the proportion of survivors with

serious handicaps has not changed significantly

since the mid-1960s. The earlier review did not

report on infants with birthweights under 800

grams, so comparisons over time cannot be made

for this birthweight group. The group of infants

that was labeled in the earlier review as weighing less than 1000 grams almost exclusively included infants with birthweights between 750 and

1000 grams; the pooled rate of serious handicap

for this birthweight category has not changed significantly from 1965-75 to 1975-85 (16 to 17 percent). Today, however, many more infants with

birthweights below 800 grams are living and contributing both relatively more normal and handicapped children to the pool of survivors with

birthweights under 1000 grams.

The conclusion that, within birthweight group,

the rate of serious handicap among survivors has

not changed significantly over time masks the contribution that neonatal intensive care probably has

made to improved morbidity, as well as improved

mortality, outcomes. Since many very sick babies who previously would have died are now surviving, increasing handicap levels among survivors should be expected. The finding of constant

levels of handicap therefore points to the increasing effectiveness of neonatal intensive care for

the long-term developmental outcomes for these

children.

Figures 2 and 3 demonstrate graphically the effects of declining mortality on the relative proportions of normal and abnormal survivors.4 The

4

Figures 2 and 3 reflect mortality and morbidity outcomes for very

low birthweight infants who are born in Level 111 hospitals and have

access to neonatal intensive care. Neonatal mortality rates for the

general population of very low birthweight infants are significantly

higher, and morbidity outcomes are unknown. Postneonatal mortality is not reflected in the figures, although such deaths probably

have a substantial impact on overall outcome rates.

Figure 2.—Outcomes for Very Low Birthweight Infants

(< 1500 gram) Born in Level III Hospitals, 1980-85

1,000

900

800

700

800

500

400

300

200

100

0

I

198 0 1971-75

Years

Normal Moderate

handicap

m

Serious Neonatal

handicap death

568

59

1980-85

SOURCES: For years 1980-85, Office of Technology Assessment (see tables 7.

10, 11, and 12). For years 1980 and 1971-75, P. Budetti, P. McManus,

N. Barrand, et al., The Costs and Effectiveness of Neonatal Intensive

Care (Health Technology Case Study #l O), prepared for the Office of

Technology Assessment, U.S. Congress, PB 82-101411 (Springfield,

VA: National Technical Information Service, August 1981).

absolute numbers of both normal and seriously

handicapped children increase. Infants with birthweights between 1000 and 1500 grams make up

about 54 percent of all very low-weight births in

the United States each year. Because of their relative numerical strength, the comparatively lower

handicap rates of this “larger” infant group moderate the overall rates of disability among all very

low birthweight infants. For example, with birth

rates at the 1984 level, if today’s neonatal intensive care was provided for all very low birthweight infants, about 2,200 seriously handicapped

children would survive who would have died in

1975. This figure must be balanced against the

15,200 net increase in normal infants who would

also survive under current conditions. The overwhelming majority of survivors in both the under 1500-gram and the under 1000-gram birthweight groups are normal.
3 1

Figure 3.—Outcomes for Extremely Low Birthweight

Infants (< 1000 grams) Born in

1,000

900

700

600

500

400

300

200

100

(

Hospitals, 1960-85

- . 

u

135

Level Ill

32

28

1960 “ 1971-75 ‘

Years

—

75

u Normal u Moderate

handicap

Serious Neonatal

handicap death

SOURCES For years 1980.85, Off Ice of Technology Assessment (see tables 7,

10, 11, and 12) For years 1960 and 1971-75, P Budetti, P McManus

N Barrand, et al , The Costs and Effectiveness of Neonatal Intensive

Care (Health Technology Case Study #10, prepared for the Off Ice of

Technology Assessment, U S Congress, PB 82-101411 (Springfield,

VA National Technical Information Service, August 1981)

NEONATAL CONDITIONS THAT CAUSE MAJOR

MORTALITY AND MORBIDITY

Deaths among very low birthweight infants in Respiratory

intensive care are caused primarily by two conditions, respiratory distress syndrome and intraventricular hemorrhage. These conditions, Respiratory

along with retinopathy of prematurity, are also

responsible for most of the long-term disabilities

that plague NICU survivors. The sophisticated

technology used in neonatal intensive care saves

lives but also can exacerbate or even, in some

cases, precipitate these problems. The application

or withholding of such technologies presents an

ongoing ethical dilemma for neonatologists.

Distress Syndrome

distress syndrome (RDS) is the

most common problem in the neonatal nursery

and the primary cause of mortality. It accounted

for 18 percent of all neonatal deaths in 1978 (122).

For babies weighing under 1000 grams, over 60

percent of the deaths have been attributed to RDS

or to intraventricular hemorrhage, and for babies

in the 1000- to 1500-gram category, 25 percent

of the deaths are blamed on these causes (11).
32

Photo credit: Strong Memorial Hospital, Rochester, NY

Premature infants with severe respiratory distress

syndrome usually require assisted ventilation.

Very premature infants experience respiratory

distress because they lack an essential substance

in the lung (or pulmonary surfactant) that reduces

the surface tension along the alveoli and prevents

the collapse of the pulmonary air spaces. The immense strain of having to force the alveoli open

with each breath makes it increasingly difficult

for these tiny babies to breathe independently.

The pulmonary surfactant does not begin to coat

the fetus’s alveoli until between the 24th and 28th

weeks of gestation, and it is not produced in major amounts until the 33rd week.

RDS occurs in 14 to 60 percent of premature

deliveries at gestational ages between 28 and 35

weeks (174). Individual clinical centers report an

even higher incidence of RDS among the extremely low birthweight babies. Kitchen and his

associates reported an overall RDS incidence of

55 percent among the under 150&gram population (82). In the under 1000-gram group, Vohr and

Hack found that 82 percent and Saigal and colleagues found that 74 percent of neonatal survivors had RDS (140,176).

Infants with RDS stay in the hospital on average twice as long as those without RDS (174). In

1984 at the University of California at San Francisco perinatal center, babies with RDS stayed in

the NICU almost four times longer than babies

without RDS and had hospital costs more than

three times higher (126).

RDS may take mild, moderate, or severe form.

Its clinical course is marked by increasing oxygen need and often by the need for assisted mechanical ventilation (breathing machines) to maintain adequate oxygenation and to remove carbon

dioxide. The primary problem for RDS babies is

the collapse of the alveoli which makes the work

of breathing increase to physiologically intolerable levels. Two respiratory therapy techniques,

developed over the past 15 years, prevent alveolar collapse by keeping up positive pressure on

the lungs between breaths. Continuous positive

airway pressure (CPAP) is used by itself to facilitate breathing, and positive end expiatory

pressure (PEEP) is used in conjunction with positive-pressure ventilation. These innovations in respiratory therapies, as well as improvements in

ventilator techniques such as the now widespread use of continuous flow pressure regulated

ventilators, have contributed to diminished severity of RDS (167). Deaths associated with RDS

have been decreasing since 1974, though it remains the leading cause of neonatal death (122).

Bronchopulmonary Dysplasia

Mechanical ventilation is essential for the survival of babies with severe RDS, but it disrupts

the babies’ normal cardiopulmonary physiology.

Its prolonged use leads to a chronic lung disease

called bronchopulmonary dysplasia (BPD). (Other

conditions besides RDS can lead to ventilation of

newborns and thus to BPD; these include pneumonia, meconium aspiration, patent ductus arteriosus, and apnea of prematurity (52). ) BPD was

first recognized and described in the 1960s (168).

By definition, all infants who require mechani-
33

cal ventilation during the first week of life, who

remain dependent on supplemental oxygen for

more than 28 days, and who have a characteristic chest radiograph have BPD (52).

BPD has become one of the most common sequelae of neonatal intensive care. A recent review

article concluded that one-third of infants given

mechanical ventilation and weighing less than

1500 grams at birth develop chronic lung disease

(167). Two multicenter studies of 700- to 1500-

gram babies in 1983 and 1984 also reported that

overall about one-third of the survivors had

chronic lung disease (8,10,69). These studies found

that female and black babies had significantly

lower rates of chronic lung disease than their male

and white counterparts in similar birthweight

groups (10,69). Birthweight was the most significant predictor of lung damage. While only 19 percent of survivors with birthweights between 1000

and 1500 grams had chronic lung disease, 51 percent of survivors with birthweights between 700

to 1000 grams had BPD (69).

Reports from individual clinical centers conflict

on the incidence of BPD among extremely small

infants. Among the tiniest babies (under 800

grams), Buckwald and associates found that 75

percent of the survivors were still on a ventilator

at 1 month, and Hack and Fanaroff reported that

70 percent of the survivors in their hospital developed BPD (24,61). On the other hand, Bennett and colleagues, also reporting on babies with

birthweights under 800 grams, found only a quarter of the survivors developed BPD (13). Similarly, three reports on infants weighing less than

1000 grams found 62, 30, and 13 percent, respectively, of survivors developed BPD (140,48,71).

Significant mortality and long-term morbidity

are associated with BPD during the postneonatal

period (86). Like RDS, bronchopulmonary dysplasia can take mild, moderate, or severe forms.

About 1 out of 40 infants discharged from the hospital with BPD is so severely affected that respiratory support continues to be required at home

(41,147). Rehospitalization and chronic respiratory problems are associated with BPD patients.

Even after controlling for other risk factors like

intraventricular hemorrhage, prolonged mechanical ventilation has been found to be associated

with poor developmental progress during the first

18 months of life in very low birthweight infants

(21). When low birthweight infants with BPD

were compared to a control group without the disease, the BPD infants had more respiratory diseases at 4 and 12 months and more severe neurodevelopmental sequelae at 2 years (177). Another

study that followed BPD patients prospectively

for 2 years post-term found that 85 percent of the

children had lower respiratory tract infections and

50 percent of the infants required rehospitalization during their first year (98). Finally, a recent

study of infants with BPD who were born between

1981 and 1983 confirmed the increased incidence

of hospitalization and respiratory problems during the first year of life, but found that, for survivors, differences with the control group in neurodevelopment evident at 1 year had disappeared

by 2 years of age (136).

Medical Practices

The detrimental effects of positive pressure ventilation have been known since 1965 (28). There

is now some evidence that the way in which ventilatory support is medically managed may be associated with outcome. When Avery and her colleagues surveyed eight tertiary clinical care centers

in 1983 and 1984 for their experience with BPD

in infants weighing 700 to 1500 grams, they found

that some institutions did significantly better than

others (10). Even after adjustments were made for

weight distribution, sex, and race (but not for

gestational age), differences among centers persisted. Among those centers studied, the intensive

care unit at Columbia University had the best outcomes. At Columbia, the policies for respiratory

management are dictated by a single physician,

and the policies are followed at all times and for

all babies. Instead of resorting to mechanical ventilation immediately, nasal CPAP is used to treat

RDS early in the course of the disease and during the weaning from assisted ventilation. Attempts are made to minimize physical trauma; endotracheal tubes are used infrequently and for

only short periods of time and muscle relaxants

are never employed.

Medical practices and the use of technology

vary widely among perinatal centers, and there

are no clearly accepted norms for practice. Fur-
34

Photo credit: Strong Memorial Hospital, Rochester, NY

Coordinated management in the NICU and use of

non intrusive therapies have been suggested as major

factors leading to improved outcomes for very low

birthweight infants.

ther systematic research is needed so that reliable comparisons among centers can be made and

epidemiological methods used to evaluate ventilatory techniques (167).

Technological Advances

Improvements in existing ventilator techniques

may hold promise for reducing the incidence of

BPD in the future. In recent years, for example,

there has been considerable research on several

ventilator techniques, known collectively as

high-frequency ventilation (HFV), that use rapid

ventilator rates that may interfere less with normal cardiopulmonary physiology. Thus far, however, HFV has not been proven superior to conventional ventilation for treating neonates in

respiratory failure (20).

Another new technology is extracorporeal

membrane oxygenation (ECMO) which entirely

bypasses the lungs using a process that closely

duplicates the gas exchange function performed

in utero by the placenta. ECMO can be used for

as long as 2 weeks, allowing time for lung recovery by minimizing the harmful influences associated with high-pressure mechanical ventilation.

ECMO has been used on more than 300 infants

in 18 centers since 1975, but with very poor outcomes for premature, small infants. The incidence

of intracranial hemorrhage is exceedingly high in

these infants, and the bleeding may be aggravated

by the heparin administered during ECMO. Unless further research can make ECMO available

for infants who weigh less than 2000 grams, only

small numbers of patients are likely to be treated

by this technology. ECMO is currently indicated

and may be lifesaving for term infants with meconium aspiration syndrome, persistent pulmonary

hypertension, or diaphragmatic hernia (189).

The better solution for the problems posed by

mechanical ventilation is to avoid the need for its

use altogether. Two technologies are under development and testing that could substantially prevent RDS in the future. The first is the prenatal

administration of glucocorticoids (steroids) to

mothers in preterm labor in order to accelerate

fetal lung maturation. The other technology,

still experimental, is the introduction of exogenous pulmonary surfactant into the lungs of the

newborn.

Steroid treatment of women in preterm labor

has been used and studied for 16 years (7). Although all the studies support the efficacy of the

steroids in reducing the incidence of RDS in the

babies subsequently born, concerns remain about

indications for use in specific situations, the influence of the steroids on infection during labor,

and the effect of the steroids on the long-term development of the babies (43). Because of these

concerns (particularly for patients with premature

rupture of the membranes), some obstetricians use

the steroids either selectively or not at all (29).

A multicenter, 7-year collaborative study on

antenatal steroid therapy attempted to resolve

these concerns. Reporting its results in 1985, the

study confirmed the efficacy of steroids in reducing the incidence of RDS and in decreasing the

severity of the disease in those affected. Furthermore, it found no evidence that the risk of infection is increased in the neonate or in the mother.

And there is no effect of the steroid on either neurological maturation or function or developmental

outcome during the first 3 years of life. However,

the researchers also reported no effect on mortality and suggested that the effectiveness of

steroid therapy is significant only for female offspring and only when the membranes are intact

(174).
35

The collaborative study excluded infants under

28 weeks gestational age. A recent, retrospective

study in Australia, designed to include a large

number of very low birthweight infants at high

risk of death, contradicted the findings of the collaborative study. It found survival is substantially

improved by antenatal steroid therapy and that

survival improves in both girls and boys (44).

Although the efficacy of steroid treatment is not

resolved, the therapy clearly has several limitations. It does not work for all babies; at best, it

lowers incidence and severity of RDS. And in

addition, because steroid therapy must be initiated at least 24 hours before delivery in order to

be effective, for obstetrical reasons many women

in preterm labor cannot be candidates for its use.

Treating surfactant deficiency by administering exogenous natural or synthetic surfactant to

the lungs of very premature babies at or soon after birth has the potential to greatly reduce the

incidence of severe RDS. The basic biochemistry

and physical chemistry of lung surfactant has been

known for a long time, but research is ongoing

for the best surfactant mixture, the optimum dose,

and the timing and frequency of administration.

At least seven recent randomized, controlled clinical trials testing natural surfactants (recovered

from lung lavage of animals or humans) document

that surfactant-treated infants have less severe

RDS than control infants (51,74,84,102). The

studies show a lower incidence of clinical RDS,

lower ventilator requirements, and less oxygen

supplementation in treated than in control infants.

The treatment with human surfactant significantly

decreased the risk of death and bronchopulmonary dysplasia (102). Several of the studies using

bovine (cow) lung extract also showed decreases

in the risk of death (158). While one recent multicenter trial in Great Britain using synthetic surfactant found reductions in mortality and the need

for respiratory support (104), other studies to date

with synthetic surfactants have shown essentially

no benefit for respiratory function (63,183).

In none of the studies do all infants respond to

the surfactant. Therefore, perfecting surfactant

replacement will not be a panacea for RDS. Researchers hypothesize that some infants have respiratory distress from other causes, such as infection, or that, in extremely premature infants,

dysfunction might by caused by other structural

immaturities (9). Large-scale, multicenter trials are

being undertaken in Europe and the United States

to continue to test surfactant experimentally. It

is probable that the necessary research and FDA

approval process will take from 1 to 5 years before surfactant therapy will be generally available

for preterm babies (8,149).

Intraventricular Hemorrhage

Along with RDS, intracranial hemorrhages, or

brain bleeds, are responsible for the most deaths

in the neonatal nursery (11). The most dangerous are intraventricular hemorrhages in which

blood seeps into the cerebral ventricles, small cavities within the brain that secrete and convey cerebrospinal fluid, Almost all serious hemorrhages

occur within the first or second day after birth

(178). Once extensive brain damage has occurred

there is little medicine can offer to improve the

prognosis (178). An infrequent additional complication for babies with hemorrhage is the development of hydrocephalus, the dangerous distension of the head caused by the excessive

buildup of cerebral spinal fluid. Fortunately many

cases of posthemorrhagic hydrocephalus resolve

spontaneously or respond to medical therapy

(153).

Premature infants’ blood vessels are particularly

fragile, and a prevalent medical opinion is that

the capillaries rupture and hemorrhage because

of fluctuations in cerebral blood flow. Along with

other causes including asphyxia, seizures, and

pneumothorax, the use of intermittent positive

pressure ventilation has been associated with

hemorrhage (42,178). It is believed by some that

the infant’s own respiratory effort, out of synchrony with the ventilator, causes changes in the

cerebral blood pressure (123). Recent research has

focused on ways, like muscle paralysis during ventilation, to prevent such fluctuating patterns of

cerebral blood flow velocity (123).

Previously recognized conclusively only on autopsy, the introduction of computed tomography

scanning and later of ultrasound brain scanning

revealed that 31 to 45 percent of infants weighing under 1500 grams at birth have subependymal

or intraventricular hemorrhages (42,123). Most

hemorrhages are graded mild and appear to cause
36

no lasting clinical problems. Estimates vary on the

proportion of cerebral hemorrhages that are severe as well as on the subsequent mortality and

morbidity. Mortality is clearly higher in groups

of infants with hemorrhage, as compared with

other infants matched for birthweight or gestational age (101), A partial review of institutional

studies completed in the 1970s reported that mortality from severe hemorrhage ranged between 50

and 65 percent and that hydrocephalus developed

in 45 to 100 percent of the survivors (153). More

recent studies have shown much lower fatality

rates of 13 percent (42) and 6 percent (153) from

intraventricular hemorrhage. In one of these

studies only one infant (6 percent of the survivors)

developed progressive hydrocephalus (153), while

in the other study no infant required shunting for

hydrocephalus (42).

The incidence and severity of hemorrhage are

correlated with gestational age and birthweight.

Infants born at less than 29 weeks gestation are

especially at risk (42,153). Before 32 weeks gestation, a disproportionate amount of the total cerebral blood flow enters the periventricular circulation, and thus any disturbance of the blood

flow tends to cause hemorrhage in this region of

the brain (178). While the association of hemorrhage with gestational age is well established and

founded on physiological evidence, birthweight

alone is not as good a predictor of the likelihood

of hemorrhage. Only one study reported results

by birthweight category. At the Johns Hopkins

Hospital in 1980, 90 percent of the babies weighing between 600 and 1000 grams had cerebral

hemorrhages (36 percent of the babies had severe

hemorrhages), but only 26 percent of the infants

weighing between 1000 and 1600 grams had hemorrhages (6 percent severe). This study found no

evidence that the 600- to 800-gram babies had

more severe hemorrhages than the other infants

in the under 1000-gram” category, although the tiniest babies did have the highest overall incidence

of hemorrhage (49).

Neurodevelopmental Outcome

Infants with severe intraventricular hemorrhages have a high rate of later neurodevelopmental handicaps. The risk of developing neurodevelopmental defects is correlated to the initial degree

Photo credit: March of Dimes Birth Defects Foundation

With appropriate therapy and support, the prognosis

for even seriously handicapped very low birthweight

infants improves over time.

of hemorrhage (30,88,121). In a study of infants

weighing under 1500 grams and born between

1976 and 1981, Papile and her colleagues at the

University of New Mexico concluded that infants

with mild grades of cerebral hemorrhage had no

poorer outcomes than other babies of similar

birthweight groups without hemorrhage. But they

also found a major handicap in 58 percent of the

infants with severe intraventricular hemorrhage,

and multihandicaps in 45 percent of this group

(121). An Australian study of extremely preterm

babies born between 23 and 28 weeks gestation

in 1981 reported that 8 of 12 infants with severe

hemorrhage (67 percent) developed major disabilities (30). The study at Johns Hopkins Hospital of low weight babies born in 1980 found less

disastrous results. At 12- to 22-month followup

examinations, of 11 babies who had severe hemorrhages, 6 were normal, 3 had moderately retarded

development, and only 2 babies or 18 percent had

serious intellectual and motor impairment (153).
37

Retinopathy of Prematurity

Another affliction affecting premature infants

is retinopathy of prematurity (ROP). The disease

occurs in progressive stages beginning with retinal vasoconstriction, proliferation of blood vessels, scarring (cicatricial disease) of the retina, retinal detachment, and ultimately blindness (137).

The disease is not invariably progressive and

blindness is by no means an inevitable outcome.

Many cases spontaneously regress to normal. Perhaps 25 percent of those with cicatricial disease

go on to blindness (124).

The epidemic of ROP between 1942 and 1953

which resulted in about 10,000 blind children is

perhaps the most widely known example of iatrogenic disease (156).5 Because of technological advances, it was routine during that decade to

administer high concentrations of oxygen to essentially every premature infant, and it was not

until 1954 that a large, multicenter cooperative

study indicted oxygen as the culprit in the exponential growth of ROP. The practice of routine oxygen administration was quickly abandoned, and the oxygen administered to infants

with respiratory distress was given in much lower

concentrations. But while there was a sharp decline in the prevalence of ROP during the 1950s

and 1960s, researchers started reporting results by

the early 1960s that created increasing uneasiness

with the blanket policy of oxygen restriction for

all premature infants. When oxygen usage was

curtailed, studies showed that neonatal mortality and the incidence of spastic diplegia (a form

of cerebral palsy) increased among premature infants. It was later estimated that for every case

of blindness prevented, approximately 16 babies

died due to inadequate oxygenation (37).

Today’s medical opinion is that the cause of

ROP is unknown but likely multifactorial, with

oxygen being but one critical factor. Other risk

factors suspected of playing a role in the etiology

of ROP include too little oxygen in utero, infection, intraventricular hemorrhage, apnea, blood

transfusions, hypercarbia, hypocarbia, patent

ductus arteriosus, prostaglandin synthetase inhi5At the time of the epidemic, the disease was called retrolental

fibroplasia. This term, still in use today, refers to the proliferation

of scar tissue during the latter stages of the disease.

biters, vitamin E deficiency, assisted ventilation,

lactic acidosis, and prenatal complications (97).

But overwhelmingly the primary risk factor is extreme prematurity, with almost all cases confined

to this vulnerable group (137). The blood vessels

in the immature retina are still developing, and

it is believed that any disturbance in retinal circulation, whether too much oxygen or too little,

can lead to the vessels’ disordered and twisted

growth. The very low birthweight, premature infant suffers from a number of the risk conditions

that can disturb retinal circulation, and some cases

of ROP appear to be unavoidable despite careful

attention to oxygen therapy and monitoring.

Advances in neonatal care methods and the survival of more small and critically ill infants have

contributed to a resurgence of ROP, which some

call a second epidemic (137). Infants weighing under 1500 grams at birth are at greatest risk. Both

the incidence and the severity of retinal disease

increases with progressively lower birthweight

and gestational age.

A 1981 review of the literature estimated that

among infants weighing between 1000 to 1500

grams at birth, 2,2 percent have scarring ROP and

0.3 to 1.1 percent are eventually blinded. For infants under 1000 grams, approximately 22 to 42

percent have cicatricial ROP and 5 to 11 percent

are blinded (124). By contrast, a Canadian population-based study conducted from 1977 to 1980

found that only 13 percent of infants under 1000

grams developed cicatricial disease, but overall

7 percent of the survivors were blinded (140). Two

more recent studies of infants in NICUs weighing under 800 grams have reported that 25 percent (61) and 10 percent (80) developed cicatricial ROP. Finally, a controlled study investigating

ROP from 1977 to 1980 in an Australian NICU

found a lower incidence of serious scarring in the

extremely low birthweight group than previously

reported. Among the infants weighing under 1000

grams, only 3 percent developed scarring ROP;

unfortunately all of them were blinded. This study

also found in the 1000- to 1500-gram population

that 2 percent developed cicatricial disease and

1 percent was blinded (187). These incidence

figures agree with Phelps’ estimates.

Although no technological fix is on the horizon, there has been renewed interest since the
38

1970s in vitamin E as a preventive measure against

ROP. Vitamin E was first used to prevent ROP

in 1949. Although that initial study did find a significant effect, subsequent trials failed to confirm

its efficacy, and when the role of oxygen was identified by the collaborative trial in 1954, both

ROP and its possible relation to vitamin E were

dropped from the research agenda (125). Lucey

and Dangman reviewed five recent clinical trials

that used vitamin E prophylactically to treat either very low birthweight patients or patients with

RDS. The results of these studies, though difficult to compare, are conflicting. Some showed a

reduction in both incidence and severity of ROP,

others showed a lessened severity with no effect

on incidence, and still others found no significant

effect at all on the occurrence of ROP (97). While

these results offer the promise of at least reducing the worst ROP, several researchers have urged

caution and extensive further research. There are

suspicions that vitamin E treatment may expose

premature infants to increased risks of necrotizing enterocolitis and intraventricular hemorrhage

(97,125). The potential negative side effects of

vitamin E may outweigh the possible benefits.
Chapter 4

Financing Neonatal Intensive Care
Chapter 4

Financing Neonatal Intensive Care

INTRODUCTION

Neonatal intensive care is a very costly service

for hospitals to provide. In the 12 children’s hospitals studied by the National Association of

Children’s Hospitals and Related Institutions

(NACHRI), neonates represented only 8 percent

of the admissions, but 21 percent of the patient

days and 25 percent of the hospitals’ costs (110).

Neonatal care was the most costly category of

service provided by the children’s hospitals and,

except for organ transplantation, involved the

most extreme lengths of stay.

Because neonatal intensive care is so expensive,

it is important to examine the mix of third-party

payers responsible for reimbursing providers and

the extent to which payments cover the costs of

providing care. Few studies directly examine the

insurance status of neonatal intensive care unit

(NICU) patients. Of 580 admissions to two NICUs

in San Francisco in 1984, 30 percent were covered by Medicaid, 47 percent by commercial insurance, and the remaining 23 percent by other

payers, self-pay, or were not covered under any

plan (126). Of course there is considerable variation among hospitals. For example, while Medicaid admissions constituted 24 percent of the total cases in NACHRI’s study, the proportion of

Medicaid admissions to total admissions ranged

from 11 to 42 percent in individual children’s hospitals (110).

In general, hospitals consider the Medicaid program to be a poor payer. Data from the American Hospital Association survey show that while

Medicaid paid only 19.8 percent of total net revenues in children’s hospitals, Medicaid beneficiaries accounted for 23.3 percent of all inpatient

days (107). Especially in the past, hospitals have

financed the provision of such uncompensated

care—charity care and bad debts—by “cost-shifting” and charging private sector payers—commercial insurers, some Blue Cross plans, and patients

who pay their own bills—proportionately more

than their share of the costs of the care.

Hospitals typically charge a daily rate for general care in the NICU and add separate charges

for ancillary and special services that accrue during the hospital stay. But these charges may be

unrelated to actual costs. When particular services have unfavorable payer mixes or are so expensive that their costs cannot be fully reimbursed,

hospitals may underprice or not fully allocate

overhead costs to the services. In general, both

intensive care services and pediatric services in

general hospitals fall into this category. In practice hospitals often subsidize these losses by pricing other services, which are used by a greater

proportion of charge-paying patients, much higher

than their actual costs. The emergence of competitive forces in today’s health care market, however, is curtailing the ability of hospitals to subsidize uncompensated care through cost-shifting

among payers.

One reason is that the proportion of patients

paying on the basis of charges is decreasing. To

keep their occupancy levels high, more and more

hospitals are participating in preferred provider

organizations (PPOs). In return for negotiated

lower prices, the PPO beneficiaries (usually former

charge-paying patients) agree to use the designated

“preferred providers. ” A conservative estimate of

the number of people enrolled in PPOs in the summer of 1986 was about 16.5 million (40). Health

maintenance organizations (HMOs), which typically have risk-sharing or prospective payment

arrangements with their hospitals, have also increased their share of the marketplace. HMO subscribers increased from 3.5 million in 1972 to 27.7

million by 1987 (73,169). Insurance companies

that previously paid on the basis of charges for

most patients are also using other methods to limit

hospital payments. Like the public payment programs, Medicare and Medicaid, private insurers

4;’
42

are moving toward prospective methods of reim- but, as payment rates are tightened to eliminate

bursement. Prospective payment can take many profit, all will ultimately limit the opportunity of

forms (cavitation, per diem, or per case payment), providers to cost-shift.

REIMBURSEMENT PRACTICES

Since the enactment of the Medicare prospective payment system in 1983, seven Blue Cross/

Blue Shield (BC/BS) plans have implemented payment systems based on diagnosis-related groups

(DRGs), and another three plans are involved in

pilot programs using DRGs (134). As of June 1985,

13 States had also adopted some form of prospective per case payment system in their Medicaid

programs (see also the following section on Medicaid policies) (91). Although the mechanisms used

by these systems to calculate the payment amounts

for the DRGs usually differ from the Medicare system as well as among BC/BS plans and Medicaid programs, there is considerable concern in the

provider community about how fairly DRG payments would reimburse hospitals for neonatal intensive care (110,130).

NACHRI simulated 1984 Medicare DRG payments in 12 children’s hospitals and found the hospitals suffered their greatest financial losses from

the neonatal cases (110). Without heavy reliance

on special payments for outliers (cases with statistically unusual lengths of stay), Medicare’s payments for neonatal cases would have fallen far below the hospitals’ operating costs. The neonatal

cases involved the highest incidence of outliers of

any major DRG grouping in the children’s hospitals. Similarly, another study analyzing NICU

admissions in six teaching hospitals in California

found that when the Medicare program’s definition of outliers was used, half of all admissions

were classified as outliers (130). A study of 1981

newborn discharges in Maryland also found 50

percent of charges in the three prematurity DRGs

were generated by outliers (16).

NACHRI has proposed replacing Medicare’s 6

neonatal DRGs with 30 new DRGs based on 6

birthweight categories and further subdivided by

the presence of major diagnoses, surgery, and the

prolonged use of mechanical ventilation. Their

proposed set of DRGs would explain 28 percent

of the variation in length of stay among neonatal cases while the current Medicare DRGs explain

only 16 percent of the variation (111). Overall,

NACHRI concluded that, for children’s hospitals,

the measurement of neonatal care is the most critical issue in constructing a prospective payment

system, and that the volume of neonatal cases is

a major factor in determining the balance of costs

and revenues under the various reimbursement

schemes (110).

Even if payments for neonatal care equal costs

under prospective payment methods, hospitals

will continue to have revenue shortfalls because

of their eventual inability to cost-shift under these

payment methods. Hospitals have recourse to

other sources of revenue for uncompensated neonatal care. Block grant funds available to States

under the Maternal and Child Health Services

Program are sometimes used to directly fund neonatal intensive care for children whose family

incomes are not low enough to qualify them for

Medicaid (135). Moreover, all States have general assistance programs that reimburse health

providers for care rendered to certain Medicaidineligible population groups (12). The extent to

which these State and county payment programs

actually cover hospital losses depends heavily on

geographic location, as States vary widely in coverage and level of payment. Finally, some State

programs, instead of targeting indigent individuals, directly support hospitals providing substantial amounts of indigent care. These States generate revenues for uncompensated care through

taxes or through surcharges on all hospitals’ revenues (12).
43

MEDICAID

The Medicaid program is the major source of

public funding for low-income women and babies.

About 6 percent of all newborns whose deliveries are subsidized by Medicaid require neonatal

intensive care, but this care is so expensive that

it represents about 30 percent of all Medicaid expenditures for maternity care (77). Medicaid pays

for about 10 percent of all births in the United

States, but with wide variations across States.

Within Federal guidelines, each State designs and

administers its own program. As a result there are

substantial State-to-State differences in eligibility

requirements, benefits, limits on services, and

reimbursement policies,

Policies

Medicaid coverage for newborns is dependent

on the eligibility of their mothers. Although the

income criteria for Medicaid eligibility are so strict

that many poor people are excluded from coverage, family structure and employment status are

no longer barriers to eligibility for pregnant

women and their babies. Legislation passed in

1984 and 1986 relaxed eligibility restrictions on

first-time mothers and married pregnant women

with some income from employment. The Deficit Reduction Act of 1984 (Public Law 98-369) also

required States automatically to cover the health

costs of newborns in eligible families. Previously,

each newborn infant had to be individually certified as eligible for Medicaid, sometimes leading

to administrative delays in coverage with costly

ramifications for providers (39), Furthermore, the

Consolidated Omnibus Budget Reconciliation Act

of 1986 (Public Law 99-272) mandates Medicaid

coverage for women and newborns for 60 days

postpartum, regardless of changes in the eligibility status of the mother. Thus, any newborn

whose mother met the income requirements for

Medicaid prior to delivery is assured of at least

60 days of automatic Medicaid coverage.

Inpatient hospital services, including neonatal

intensive care, are mandated covered services under the Federal guidelines for Medicaid. However,

some States place limits on the number of days

per admission or per year that a beneficiary is covered for inpatient care. As of June 1985, 13 States

had such day limits, although several programs

allowed extensions for medical necessity (91).

Coverage of inpatient days is also limited according to diagnosis in some Medicaid programs. Likewise, States can limit the number of covered physician visits. Thirteen States limit physicians’

inpatient visits, but in general the limits are one

or two visits per day for allowable hospital days

(171).

Prior to the Omnibus Budget Reconciliation Act

of 1981, which freed States from following traditional Medicare payment practices, States generally used reasonable cost-based reimbursement

principles. By June 1985 only 14 Medicaid programs still used the retrospective per diem method

(91). Because of both economic and political pressures, most States adopted alternative hospital

reimbursement strategies in their Medicaid programs. As discussed earlier, 13 States use some

form of prospective per case rate, either on a simple per admission basis or a discharge diagnosis

basis. Except for Utah, all these programs use

State-specific data, rather than Medicare data, to

calculate DRG weights (134). The data sources

used include hospital cost report data, paid claims

files, and Medicaid claims data. Another 21 States

use a prospective per diem as the unit of payment

(91). Although diagnosis is not taken into account,

some of these systems do provide different per

diem rates for general inpatient care and for intensive care. Finally, five States use an annualized payment system whereby the hospitals receive a negotiated or contractual global fee from

Medicaid. Twenty-four of the State Medicaid programs have developed special adjustments that

recognize costs associated with the provision of

uncompensated care.

Expenditures for Neonatal

Intensive Care

Table 13 shows that of babies whose deliveries are reimbursed by Medicaid, the proportion

requiring neonatal intensive care varies widely by

State. In the 13 States responding to a survey by

the Alan Guttmacher Institute, the proportion of
44

Table 13.—Medicaid Recipients in Neonatal Intensive Care Units (NICUs), and Medicaid Expenditures,

Selected States, 1983-85a

Percent of total Total Medicaid Medicaid expenditure

Number of Medicaid Medicaid births expenditures for NICUs per infant

State and year infants in NICUsb

treated in NICUs ($ x 1,000)bin NICU

California (FY84) . . . . . . . . .

Florida (FY85). . . . . . . . . . . .

Idaho (CY85) . . . . . . . . . . . . .

Louisiana (CY83) . . . . . . . . .

Maryland (FY85) . . . . . . . . . .

Massachusetts (FY83). . . . .

Michigan (FY85) . . . . . . . . .

Missouri (FY85) . . . . . . . . . .

Nevada (CY84) . . . . . . . . . . .

North Carolina (FY84) . . . . .

Ohio (FY85). . . . . . . . . . . . . .

Oregon (FY85) . . . . . . . . . . .

Pennsylvania (FY85) . . . . . .

South Carolina (FY85) . . . . .

Tennessee (FY85) . . . . . . . .

Vermont (FY85) . . . . . . . . . .

Washington (FY85) . . . . . . .

Wisconsin (CY83) . . . . . . . .

6,152

3,965

—

395

477

1,052

790

440

55 —

—

285

1,449

418 —

—

359

428

6.2

20.3

—

4.3

4.3

8.8

2.6

4.6

3.7—

—

6.2

6.6

5.7—

—

2.9

3.2

$92,069

12,256

880

7,322

9,703 —

19,717

1,623

1,618

3,012

48,410

578

8,681

3,718

2,101

439

1,776

2,164

$14,966

3,091

—

18,538

20,341 —

24,958

3,689

29,414 —

—

2,028

5,991

8,894 —

—

4,947

5,056

aMethodology for estimates: Louisiana —estimated neonatal intensive care data furnished by State; Massachusetts—reported neonatal intensive care data based on

partial reporting by the State, reported dataon infants in neonatal intensive careas a percentageof Medicaid births are only for facilities reporting both kindsof

data; Ohio—reported neonatal intensive care expenditures, annualized from 13 months of data; South Carolhra and Washington—estimated neonatal intenswe care

data furnished by the State; Vermont—reported neonatal intensive care expenditures, annualized from 14 months of data,

bExcludes prepaid Plans

SOURCE A M Kenny, A. Torres, N Dittes, et al,, “Medicaid Expenditures for Maternity and Newborn Care in America, ” Family Planning Perspectives 18(3):103-110,

May/June 1986

Medicaid babies admitted to NICUs averaged 6.1

percent but ranged from only 2.6 percent in Michigan to an overwhelming 20.3 percent in Florida.

The 6.1 percent average for all surveyed States

is consistent with national data on the proportion

of all newborns who receive intensive care. (See

ch. 2.) Because the Medicaid population is generally considered to be at higher risk, a greater

incidence might have been expected (77).

Table 13 also shows enormous differences in

the per-patient Medicaid payments for neonatal

intensive care. Of the 12 Medicaid programs

responding to the 1985 survey, average NICU

expenditures range from $2,000 in Oregon to

$29,400 in Nevada. The average expenditure in

the 12 States is $11,800 (77). The average Medicaid expenditure is lower than the average hospital costs reported for NICU infants in children’s

hospitals and teaching hospitals, but higher than

the average costs for all sick neonates in Maryland Level III hospitals. (See ch. 2.) The NACHRI

study found that Medicaid patients in children’s

hospitals are more costly to treat than the general pediatric population and represent a more difficult case mix (110).

It is difficult to draw conclusions from the dramatic variation in expenditures among States in

part because the scope of each State program is

so different and in part because of the nature of

neonatal intensive care. The NACHRI study of

children’s hospitals showed that neonatal care is

the most costly service provided by the pediatric

hospitals and involves the longest lengths of stay.

Therefore, in States that extend Medicaid benefits to the medically needy (people who do not

meet income requirements until they “spenddown’” on medical expenses) babies not normally

qualified for Medicaid may become eligible because they are in neonatal intensive care units.

In addition, the clinical composition of the Medicaid NICU populations in the States responding

to the survey is unknown. Because extreme outliers are common in neonatal intensive care, a few

cases with extraordinary costs could severely skew

a State’s average expenditures in a single-year

reporting period.

‘Through the “spend-down” provision, families or individuals,

who meet all the categorical requirements for Medicaid except income, can become eligible for Medicaid under the medically needy

program if they have high medical expenses that reduce income below the medically needy maximum.
Chapter 5

Access to Neonatal Intensive Care
Chapter 5

Access to Neonatal Intensive Care

INTRODUCTION

The concept behind regional perinatal care is

a coordinated, cooperative system of physicians

and hospitals in which maternity patients and

their newborns at high risk are identified early and

the optimal techniques of obstetrics and pediatrics

are appropriately applied (34). Numerous studies

document the higher survival rates for very low

birthweight infants born in Level 111 hospitals

versus those born elsewhere within the same geographic area. Table 14 summarizes these reports

and lists, for comparative purposes, neonatal

mortality rates for several geographic regions and

for the United States as a whole. In those population-based studies that identify place of birth by

hospital type, the survival rates for very low birthweight infants born in perinatal centers are significantly better than for those born in either Level

I or Level II hospitals. ’ In New York City, for example, Paneth and his colleagues concluded that

in 1978 preterm and low birthweight infants born

IThe single exception was a 1978 study in Iowa which found higher

survival rates in small Level I hospitals than in Level 111 hospitals

for very low birthweight infants. Since this was after the regionalized system was in place, a likely explanation is that physicians working in the smallest hospitals referred the highest risk obstetric cases

to the perinatal center (66). Moreover, a followup study showed

the survival advantage in small Level 1 hospitals disappeared after

1978. Babies born in the Level 111 center were most likely to survive

(67).

Table 14.— Regional Neonatal Mortality Ratesa for Very Low Birthweight Infants, 1976.81

Birthweight (grams)

Reference b Year of birth Population < 1000C

1001-1500C

< 1500

Saigal (139)d. . . . . . . . . 1976-78

Paneth (119) . . . . . . . . . 1976-78

Vogt (175) . . . . . . . . . . . 1977

Hein (66) . . . . . . . . . . . . 1978

Goldenberg (54). . . . . . 1976-80

Cordero (35) . . . . . . . . . 1977-79

Gortmaker (59). . . . . . . 1978-79

Shapiro (151) . . . . . . . . 1978-79

Saigal (140)d. . . . . . . . . 1977-80

Kitchen (81)d . . . . . . . . 1979-80

Newns (1 14) . . . . . . . . . 1979-81

Buehler (26) . . . . . . . . . 1980-81

U.S. Department of

Health and Human

Services (172)h

. . . . . 1980

aDeathS Der 1.000 live births

Hamilton-Wentworth County, Ontario . . . . .

New York City . . . . . . . . . . . . . . . . . . . . . . . . .

Level Ill . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Southern California. . . . . . . . . . . . . . . . . . . . .

Iowa. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Level Ill . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Alabama . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Level Ill . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Franklin County, Ohio . . . . . . . . . . . . . . . . . .

Level Ill . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

3 States Louisiana, . . . . . . . . . . . . . . . . . . . . .

Tennessee, Washington . . . . . . . . . . . . . . . . .

Level Ill . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

8 geographic areas . . . . . . . . . . . . . . . . . . . . .

McMasters Health Region . . . . . . . . . . . . . . .

Level Ill . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Victoria, Australia . . . . . . . . . . . . . . . . . . . . . .

Level Ill . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

West Midlands, England . . . . . . . . . . . . . . . .

Level Ill . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Georgia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

U.S.A. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

617

—

—

628f

—

—

663

497

521g

484g

—

541

462

744

710

713

522

642

648

122

529’

487e

241

—

—

212

118

580e

470’

185

139

—

—

—

—

—

276

175

161

187

343

371f

470

440

—

—

—

—

439

—

—

—

—

417

267

—

431

bsee references in the back of this case study for full CitatlOnS

csome studies repofled birthweight categories as 500-999 and 1000-14999

dDeaths reported to hospital discharge

elncludes 501. to 1250-g Infants

fBi~hWelght Categories 701 to 1000 and 701 to 15009

glncludes 750. to 1000-g infants

hRates for singleton bidhs

SOURCE Off Ice of Technology Assessment, 1987

47
48

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

Identifying high-risk pregnancies and appropriately

referring mothers to perinatal centers is key

to regionalization.

outside Level III centers had a 24 percent higher

risk of dying (120). During the same time period,

Gortmaker and associates studied birth and death

certificates in four States and found that black infants with birthweights between 1000 and 1500

grams were more than twice as likely to die during the neonatal period if they were born in a rural hospital instead of in a perinatal center (59).2

One component of regionalization is the efficient transfer of sick newborns from their hospital

of birth to facilities capable of providing sophisticated critical care. But even a well-functioning

infant transfer system cannot erase the mortality

differences across hospital levels. In the New York

City study, deaths were assigned to hospital of

birth to assess the effect of interhospital transport

on neonatal mortality. Despite the transfer of 48

percent of the low birthweight infants from the

Level I hospitals to Level 111 units, the neonatal

death rates were significantly higher in Level I hospitals (119). Thirty percent of all neonatal deaths

in the study population occurred in the first 4

hours of life. These early deaths cannot be influenced by infant transport and point to difficulties in the resuscitation and immediate neonatal

‘This was the most disadvantageous differential in survival reported in the study, and it should be noted that overall survival

among black infants was greater than among white infants at the

same level of hospital care (59).

management of low birthweight infants in the

more poorly equipped and staffed hospitals.

The advantages and disadvantages of neonatal versus antenatal (maternal) transfer continue

to be argued in the medical literature. Some

studies find no significant differences in mortality (17,103) and others report advantages for those

infants referred prior to delivery (64,89), but all

the institutional studies report only on the infants

who reach the intensive care unit. The newborns

selected for transfer introduce bias into these

studies. On the one hand, the sickest and most

premature neonates may die at referring hospitals before transport can be arranged, and transfers could therefore be more viable than their cohort. On the other hand, preterm infants without

morbidity are probably cared for at their hospital of birth rather than being transferred. Moreover, transported infants may suffer inadequate

temperature maintenance or delays in the initiation of mechanical ventilation before their admittance to the neonatal intensive care unit (NICU),

leading to a relatively sicker group of transferred

babies (81).

Several population-based studies support maternal over neonatal transport. In HamiltonWentworth County in Ontario, researchers estimate that the pre-delivery transfer of selected

pregnant women to the regional center accounted

for 28 percent of the improvement in survival

among the very low birthweight babies born after the introduction of neonatal intensive care

(157). In the British Mersey Region in 1980, neonatal survival was significantly better for those

very low birthweight infants who were transferred

prior to birth than for infants who were not transferred or were transferred after delivery (93).

Moreover, the difference between the survival rate

for those infants transferred before delivery and

those infants born to mothers who had booked

at the perinatal center was not significant. And

in the State of Victoria, Australia in 1979 and

1980, both survival and outcome were better for

tertiary center births than for those born elsewhere

(81). The Australian study, which examined only

infants with birthweights under 1000 grams,

found a significantly higher prevalence of severe

functional handicaps in the outborn children than

in either the inborn or the antenatal transfer
49

groups. Several other institutional studies also report an increased incidence of intraventricular

hemorrhage or respiratory distress syndrome in

infants transported neonatally as compared with

inborn infants, implying these infants were not

LEVEL II HOSPITALS

Besides questioning the efficacy of relying on

neonatal transport from Level I hospitals, the

population-based study in New York City also

raises doubts about the effectiveness of neonatal

intensive care in Level 11 facilities. The study

showed that while there was a survival advantage for low birthweight babies in a Level II hospital over a Level I hospital during the first 4 hours

of life, that advantage disappeared by 28 days.

Improvements in neonatal mortality rates from

1976 to 1978 were statistically significant only for

infants born in Level III units. The researchers

concluded that intrapartum management and

postnatal stabilization were performed well in

Level II hospitals, but that the management of

later complications of low birthweight such as respiratory failure was less expertly handled (119).

Paneth and his colleagues blamed the virtual

absence of infant transfers from Level II units to

Level 111 facilities for the discouraging mortality

rates (120). Support for these views comes from

the State Division of Health Services in North

Carolina. Their study of perinatal mortality rates

from 1969 to 1979 for very low birthweight infants in North Carolina found that by 1979 the

Level II centers had higher mortality rates than

either of the other two hospital levels (117). This

study also concluded that Level II hospitals seldom referred infants or maternity patients. The

author urged greater participation in a coordinated referral system.

One reason Level II hospitals might not refer

high-risk mothers and infants to nearby Level III

hospitals is competition. A major way that hospitals compete for patients is through the scope

and quality of services. Childbirth is often a family’s first contact with hospitalization. Transfer

of mother or child to a nearby Level III hospital

could jeopardize the family’s continuing relationadequately stabilized at birth (31,89,103). Although the birth of a premature infant cannot always be anticipated, there is ample evidence that,

ideally, pregnant women at high risk should be

transferred to a perinatal center prior to delivery.

ship with the Level II institution. Particularly in

urban settings, where competition among hospitals is keenest, Level II facilities may be reluctant

to refer to Level III units (128).

Since the New York City and North Carolina

studies, there has been a nationwide movement

to upgrade the capabilities of Level II units (144).

Conversely, some Level II hospitals have terminated their specialized neonatal intensive care

services. In New York City, for example, the number of facilities offering Level II nursery services

declined from the study period high of 20 to only

14 in 1982 (65,120). Moreover, the extent to which

there is a problem may well be related to the region of the country. For example, a Level II nursery in Georgia, which published its experience for

1976 to 1978, referred 62 percent of its newborns

with birthweights under 1500 grams to a Level III

facility (76). The Level II facility unit considered

that its capabilities included the care of moderately ill newborns weighing 1500 grams or more

and convalescing neonates who had been returned

from the Level III facility.

The guidelines published by the Committee on

Perinatal Health in 1977 and reiterated jointly by

the major professional associations in 1983 specifically list gestation of less than 34 weeks or

birthweight of less than 2000 grams as indications

for transfer from Level II units to Level III units

(4,34). But the American Academy of Pediatrics

acknowledged the wide range of functional capabilities existing within the definition of a Level 11

unit in a 1980 statement by its Committee on Fetus and Newborn (3). Some units provide care

only slightly more complex than Level I nurseries, while others have capabilities approaching

Level III centers. The referring practices of these

centers may vary just as widely. And while the

Committee on Fetus and Newborn clearly states
50

that it is undesirable for Level II units to provide ing liaison and consultation with a Level III center.

neonatal cardiology and surgery services, no men- Each Level II unit is urged to assess its own capation is made of referring practices for low birth- bilities for delivering care in terms of personnel

weight infants beyond the requirement for ongo- and facilities.

CONCENTRATION OF BIRTHS IN LEVEL Ill HOSPITALS

Although regionalization is often given credit

for many of the improvements in perinatal outcome over the last decade, little is known about

the extent to which high risk mothers and infants

are actually redistributed to the appropriate levels

of care. Several groups have reported comparisons of areas that did or did not have a regionalized program. In 1975, the Robert Wood Johnson

Foundation funded eight sites to promote coordiPhoto credit: Kay Chernush, photographer,

Children’s Hospital National Medical Center, Washington, DC

Time is crucial in the transport of very sick newborns.

nated systems of perinatal care for entire geographically defined regions, comprising about 6

percent of the births in the United States. An

evaluation compared mortality rates both before

and after regionalization and in program and comparison regions. Neonatal mortality rates declined

in both types of regions, but no greater reduction

was noted for the program-funded regional network. The investigators concluded that regionalization had become widespread and extended

into the comparison areas without the encouragement of specific funding (100). Likewise, Siegel

and colleagues looked at two comparable areas

in North Carolina (one funded to develop a perinatal system) and reached much the same conclusions as the Robert Wood Johnson Foundation

researchers (155). However, a third program

launched in 1979 specifically to improve perinatal health care (including high-risk maternal referrals to Level III centers) in 10 rural areas with histories of high infant mortality did show sharp

declines in neonatal mortality rates while rates in

control areas did not change (58).

The Robert Wood Johnson Foundation evaluation also studied the extent to which high-risk

births occurred in tertiary care centers. By 1979,

almost 60 percent of all very low weight births

in the demonstration areas were delivered in

perinatal centers, compared with only 36 percent

at the beginning of the decade. Similar changes

occurred in the comparison areas, although the

percentage of very low weight births in the Level

III units was lower than in the demonstration

areas (100). Those results, along with the results

of other studies examining the concentration of

very low weight births in Level III units, are

shown in table 15. All the studies demonstrated

a shift in the site of delivery over time, with highrisk deliveries increasingly moved to the perinatal centers. Such changes indicate that with regionalization some antenatal assessment of risk is
5 1

—

occurring and that the management of high-risk

pregnancies is being transferred to the Level III

units before delivery.

But table 15 shows there is wide variation

among areas in the extent to which infants of very

low birthweight are born in Level III hospitals.

The largest area, the Robert Wood Johnson Foundation regions representing 6 percent of all births

nationally, shows the highest concentration of

very low weight births in tertiary centers. Iowa,

a rural State, shows one of the lowest concentrations. However because of low population density and distance considerations, a single Level III

center serves the entire State, and Iowa is considered to be successfully regionalized (66).

The degree to which access to Level III services varies within regions among different subgroups in the population is difficult to determine.

Gortmaker and colleagues examined racial and

urban/rural differences in four States. (See table

15. ) The lowest concentration of very low weight

births in Level 111 centers occurred among whites

in Louisiana and Ohio; 23 percent of white very

low birthweight infants were born in regional

centers in these States. Black infants, in general,

had better access to specialized services. In Tennessee more than 50 percent of the black very low

birthweight infants were born in perinatal centers.

Residents of rural areas were always less likely

than their urban counterparts to be born in Level

III units, but again, black rural infants were more

likely than white rural infants to be born in specialized centers (59).

These data on the concentration of very low

weight births in Level III centers do not fully describe the extent to which sick newborns actually

receive services in Level 111 units. The contribution of infant transport systems to increased access cannot be assessed. However, the wide variation among geographic areas in the concentration

of high-risk births points to inequities in the availability of neonatal intensive care.

Table 15.—Concentration of Births of Infants Weighing Less Than 1500 Grams in Level Ill Hospitals

— —

Births in Level Ill hospitals

< 1500 grams All births

Reference a Year of birth Population (percent) (percent)

Hein (66) . . . . . . . . . . . . . . . . . . . . . . . . 1978 Iowa . . . . . . . . . . . . . . . . . . . . . . . . . . . 23 7

Nugent (1 17) . . . . . . . . . . . . . . . . . . . . 1979 North Carolina . . . . . . . . . . . . . . . . . . 47

McCormick (100) . . . . . . . . . . . . . . . . . 1978-79 8 Robert Wood Johnson

Foundation geographic

areas. . . . . . . . . . . . . . . . . . . . . . . . . 59 43

Comparison Areas . . . . . . . . . . . . . . . 47 31

Gortmaker (59) . . . . . . . . . . . . . . . . . . . 1978-79 LA: white, urban . . . . . . . . . . . . . . . 27

black, urban . . . . . . . . . . . . . . . 59

white, rural . . . . . . . . . . . . . . . . 14

black, rural . . . . . . . . . . . . . . . . 31

Ohio: white, urban . . . . . . . . . . . . . . . 26

black, urban . . . . . . . . . . . . . . . 35

white, rural . . . . . . . . . . . . . . . . 13

black, rural . . . . . . . . . . . . . . . . 11

TN: white, urban . . . . . . . . . . . . . . . 40

black, urban . . . . . . . . . . . . . . . 67

white, rural . . . . . . . . . . . . . . . . 38

black, rural . . . . . . . . . . . . . . . . 45

WA: white, urban . . . . . . . . . . . . . . . 42

white, rural . . . . . . . . . . . . . . . . 44

Goldenberg (53) . . . . . . . . . . . . . . . . . . 1980 Alabama. . . . . . . . . . . . . . . . . . . . . . . . 56 32

Lobb (93) . . . . . . . . . . . . . . . . . . . . . . . . 1980 Mersey, Great Britain . . . . . . . . . . . . 28

Information Service Center (72). . . . . 1984 Maryland . . . . . . . . . . . . . . . . . . . . . . . 54 31

asee ~~f~renCeS in the back of this case study for full citations

SOURCE Off Ice of Technology Assessment. 1987
52

BARRIERS TO MATERNAL AND NEONATAL TRANSPORT

Level III hospitals may refuse admission for a

neonatal transfer for a number of reasons. The

lack of available beds is the reason proffered in

most instances. Although the average occupancy

nationwide in Level III units is only 73 percent,

occupancy in some intensive care nurseries does

consistently approach 100 percent. (See ch. 2.) It

is also likely that a few hospitals use the excuse

of full occupancy to turn away infants whose care

would not be adequately reimbursed. As discussed

in chapter 2, neonatal intensive care is one of the

most costly services provided by hospitals and entails some of the longest lengths of stay. Uninsured

infants may be deemed undesirable admissions by

some hospitals. Moreover, because Medicaid is

often considered a poor payer which does not

fully reimburse a hospital’s costs, even Medicaid

coverage may not ensure entry. (See ch. 4.)

There is no legal requirement that forces hospitals to admit every child, regardless of ability

to pay. Depending on when a neonatal intensive

care service was started, the need for such services may have been analyzed by health planners

under State certificate-of-need legislation. However, once a certificate-of-need is granted, the

State has no ongoing authority over how services are operated. The Joint Commission on Accreditation of Hospitals, which reviews the operations of hospitals and lists staffing, equipment

and procedural guidelines for neonatal intensive

care units, does not address issues of access to

treatment (75). Some hospitals are legally required

to provide a certain amount of charity care to indigent individuals if they received Federal funds

for hospital construction and renovation under

the Hill-Burton Act of 1946. Currently, about

4,200 hospitals in the United States are still fulfilling their Hill-Burton obligations (182).

Likewise, hospitals are not required to preadmit high-risk pregnant women for their deliveries, even if the hospital serves as the designated

perinatal center for the region. In fact, most hospitals have policies requiring advance payment

in full for deliveries if the maternity patients do

not have insurance. However, in March 1986 the

Consolidated Omnibus Budget Reconciliation Act

was passed, and it prohibits any Medicare-participating hospital from refusing to treat or from

transferring any woman already in labor (50).

The same financial incentives operate for physicians. Obstetricians and pediatricians may be

leery of accepting non-paying or partial-pay patients. Survey data show that obstetricians lag behind other specialties in the extent to which they

accept Medicaid patients. The average Medicaid

reimbursement rate for obstetrical care is at least

one-third lower than the average private fee, and

the gap between the two amounts is widening over

time (170).

On the other hand, obstetricians with paying

maternity patients may not want to refer highrisk cases to the perinatal center and risk losing

their fees. Many of the Level III hospitals are

university-affiliated with closed medical staffs;

non-faculty physicians are not allowed admitting

privileges.

The escalation in recent years of malpractice

actions, especially against obstetricians, has probably had a side effect of improving access to

perinatal services for high-risk women. Concerns

about possible malpractice litigation would encourage community obstetricians to refer highrisk maternity cases to regional centers. Obstetricians might particularly employ such “defensive

medicine” tactics for low-income high-risk women

because the physicians have poor financial incentives to keep their patients.

Finally, the perceptions of physicians about neonatal mortality and outcome affect access to neonatal intensive care. Several studies show that

physicians substantially underestimate the potential survival of low birthweight infants (56,185).

The obstetrician’s understanding of prognosis in

turn influences his or her management of premature labors, such as the decisions to utilize electronic fetal monitoring, to perform cesarean sections for fetal distress, or to transfer mother and

baby prior to delivery to a Level III facility (56).

These early management decisions may determine

whether the newborn infant actually survives.

A survey of obstetrical residency programs in

1981 found that at less than 28 weeks gestational
53

age there is still considerable variation among hos- deliveries under these conditions. (The average

pitals in how labor and delivery are managed. birthweight for a 27-week infant is between 950

Based on the survey, about one-half of univer- and 1000 grams. ) This study points to a lack of

sity training programs consistently performed ce- consensus among obstetricians on how aggressarean sections for fetal distress at 27 weeks gesta- sively labor and delivery should be managed betional age and one-third of the nonuniversity tween 25 and 28 weeks gestational age (55).

residency programs routinely performed cesarean

THE TINIEST BABIES

Once a low birthweight infant is in a Level III

hospital, through birth or transfer, access to neonatal intensive care is almost assured. In practice, the almost universally followed approach in

the NICU today is to initiate aggressive treatment

for all infants at birth (160,165). Broad latitude

has traditionally been given to doctors and parents involved in making the difficult decisions

about treatment for premature or sick neonates.

But in part in reaction to the so-called “Baby Doe”

rules, pediatricians, anxious about their legal liability, are increasingly treating virtually all newborns, including extremely premature infants with

very low birthweights. Although the rules came

about in response to several “Baby Doe” cases involving selective nontreatment for infants with

Down’s syndrome, spina bifida cystica, and other

congenital anomalies, the primary controversy in

the medical community revolves around the tiniest

infants who are born at the threshold of viability. s

The Department of Health and Human Services (DHHS) issued a “Notice to Health Care

Providers” in May 1982 informing hospital administrators that, under Section 504 of the Rehabilitation Act of 1973, they risked losing Federal

funds if treatment or nourishment was withheld

from handicapped infants. The so-called “Baby

Doe” rules were promulgated in interim regulations by DHHS the following March and in final

regulations in January 1984. Facilities were required to post notices in nurseries and provide access to medical records for Federal investigators.

Although the Supreme Court ruled in 1986 that

the 1973 Rehabilitation Act could not be used to

‘Most experts believe that there is an anatomical threshold of fetal development (especially for lung and kidney development) at

about 23 to 24 weeks before which time fetal survival is not possible even with modern techniques (148).

justify the regulations because there was no evidence that hospitals denied care to babies solely

because of handicap, Congress had in the meantime passed legislation dealing with medical neglect in the 1984 amendments to the Child Abuse

Prevention and Treatment Act (Public Law 98-

457) (181). These amendments define medical neglect in the treatment of disabled infants as child

abuse and give the oversight responsibility for implementing the law to the States’ child-abuse agencies (164). Both the American Academy of Pediatrics, which vehemently opposed the initial Baby

Doe regulations, and Right to Life groups, which

supported them, participated in reaching compromise language. Regulations implementing this

legislation went into effect in June 1985.

The new regulations permit “reasonable medical judgment” to be used in making decisions

about the care of disabled newborns and explicitly

lists three exceptions when withholding medical

treatment (other than appropriate nutrition, hydration, or medication) is not “medical neglect”

(106,164). The exceptions deal with situations

where treatment would merely prolong dying or

would be “virtually futile” in terms of the survival

of the infant and, under these circumstances, the

treatment itself would be inhumane.

The regulations also encourage hospitals to set

up Infant Care Review Committees. A 1985 survey by the American Academy of Pediatrics of

hospitals with NICUs found that nearly 66 percent had an ethics body, up from 56 percent the

previous year. However, the survey also found

that slightly more than half of the committees had

considered no cases during the previous year (1).

Apparently, Baby Doe cases are relatively rare

with most conflicts resolved by parents and health

professionals (181),
54

Although the Baby Doe rules have raised public debate on the issue, their legal impact on treatment decisions for extremely premature infants

is unclear (90). Aside from the limited clout of

the new regulations (withholding Federal dollars

from the State child protection service agency),

the language is ambiguous and open to interpretation. In the case of extremely low birthweight

infants, “reasonable medical judgment” is divided

on whether it is “virtually futile” to offer treatment. The guidelines accompanying the regulations admit that “virtually futile” does not mean

absolute certainty and that the prospect of death

need not be imminent (106). If most physicians

understand the law this way, a minimal effect on

treatment decisions might be expected. On the

other hand, in today’s malpractice-wary climate,

physicians may react by treating aggressively all

but the most clearly hopeless cases so as to avoid

any possibility of liability for medical neglect

(105).

In practice, physicians often employ guidelines

for treatment based on their own observations of

prognosis. Under such informal policies, infants

who are born weighing less than 500 grams are

not resuscitated in most hospitals. In some institutions, this boundary on treatment might extend

to babies under 600 grams or even under 750

grams, Of course gestational age and the condition of the infant are also taken into consideration. Without the application of sophisticated lifeextending technologies, like respirators, these infants are almost certain to die. Although, as discussed, the Baby Doe regulations do not force

evaluation of such policies, many neonatologists

cite the Federal rule as a primary reason for the

aggressive treatment of smaller and smaller neonates. At least one published report blames the

intrusion of the Baby Doe regulations into the

NICU for the unnecessary and costly treatment

of conjoined twins when there was no hope for

survival (150).

Practicing defensive medicine is a negative incentive for most physicians, and it should be

noted that the same neonatologists who mention

legal considerations also point to the now many

publicized successes with extremely tiny babies.

The normal outcome for some of these infants encourages imitation. More importantly, it is impossible during the first weeks of life, even with

today’s most sophisticated technology like ultrasound brain scans, to predict accurately an infant’s

eventual outcome (21,163).
Chapter 6

Economic Analysis of

Neonatal Intensive Care
Chapter 6

Economic Analysis of

Neonatal Intensive Care

INTRODUCTION

This case study has shown that neonatal intensive care is a high-cost technology that demonstrably saves the lives of low birthweight babies.

But the long-term consequences of providing intensive care are more difficult to evaluate. Over

the lifetimes of the infants treated in neonatal intensive care units (NICUs), are medical care costs

increased or reduced? Likewise, what are the effects on the pain and suffering of patients and their

families? Is it possible that some severe handicaps

in children are considered by families to be worse

than death?

Cost-effectiveness analysis (CEA) can provide

insight to these issues by comparing the costs, benefits, and quality of life implications of neonatal

intensive care in a single economic evaluation.

Ideally, CEA compares the costs and the health

effects of alternative strategies, such as the provision of neonatal intensive care with another kind

of intervention for low birthweight babies. The

expected changes in health effects are arrayed

against the net medical care costs incurred by providing each alternative approach to neonatal care.

Unlike CEA, cost-benefit analysis attempts to

place dollar values on all consequences, both positive (benefits) and negative (costs), arising from

alternative courses of action. The alternative with

the highest level of monetary net benefit (or lowest

net cost) is preferred to others. If the net benefit

is greater than zero, the alternative is “cost saving” and considered worthwhile on efficiency

grounds alone. Because it is so difficult to place

a value on the benefits of a strategy, cost-benefit

analysis often proves inadequate. Some researchers have calculated the lifetime economic productivity of survivors, but this is certainly an incomplete surrogate for the benefits of a life-saving

intervention. How can a value be placed on the

pain, suffering, anxiety, emotional distress, or

grief in patients and their families, especially when

these consequences occur at different times in the

future? These psychosocial benefits (or losses)

defy measurement (179).

Cost-effectiveness analysis escapes the problem

of trying to value benefits by using the effectiveness measure (e.g., quality-adjusted life years) as

a proxy. Net costs per unit of health effectiveness

are calculated and compared with other programs

with similar health goals. The interpretation of

results from cost-effectiveness analyses remains

problematic, however, because methodological

differences in study design make it difficult to

directly compare one CEA evaluation to another.

COST= EFFECTIVENESS AND COST-BENEFIT STUDIES

The earlier OTA study on neonatal intensive

care by Budetti and his colleagues concluded that

neonatal intensive care for infants weighing 1500

grams or less was marginally cost saving when

the value of the lifetime economic productivity

of survivors was estimated. Treatment of the subgroup weighing under 1000 grams cost more in

net medical costs than was saved in productivity

if outcomes from 1971 to 1975 were used. When

mortality and morbidity rates from later in the

1970s were used in the calculation, however, treatment of the extremely low birthweight infants also

became cost saving. The benefits accruing from

the lifetime earnings of the increased number of

normal survivors outweighed the costs incurred

by the increase in the absolute number of severely

handicapped (25).

57
58

Budetti and his colleagues compared the costs

of neonatal intensive care with less intensive care

of ill newborns. Using mortality and morbidity

rates gleaned from the literature, they relied on

a cost-benefit economic model that assigned dollar values based on the assumptions that normal

survivors are economically productive; nonsurvivors are relatively inexpensive; and seriously

defective survivors are both expensive and not

productive. These hypothetical scenarios may not

have adequately mirrored the true life experience

of NICU survivors. In addition, their analysis did

not take into account the psychosocial costs and

benefits of neonatal intensive care that were discussed previously.

The most comprehensive economic evaluation

conducted to date was undertaken by a group of

Canadian researchers (19). They studied the mortality and morbidity of all very low weight infants born to the residents of a southern Ontario

county before (1964 to 1969) and after (1973 to

1977) the introduction of neonatal intensive care.

The assessment of survivors’ health included a

classification of health states that measured physical, social, role, and emotional function as well

as health problems. To take into account these

psychosocial costs, a sample of parents was then

surveyed on the desirability or undesirability of

the health states relative to one another. For example, parents rated some chronic dysfunctional

states as worse than death. The survey results

were then used to weight life-years for quality.

These quality-adjusted life-years (QALYs) were

the measure used to adjust additional years of life

(decreasing mortality) for the long-term disabilities that some survivors have as they live out their

life expectancies.

Health outcomes were calculated for two birthweight groups: infants weighing 1000 to 1499

grams and infants weighing 500 to 999 grams. Like

many other studies, the Canadian group found

that the rate of survival to hospital discharge increased with neonatal intensive care. And, while

the introduction of neonatal intensive care also

resulted in increases in quality-adjusted life-years

for the very low birthweight infants as a whole,

for the subgroup of infants weighing less than

1000 grams, the increase in quality-adjusted lifeyears was lower than the increase in unadjusted

additional life-years, implying a poor quality of

life for many of these tiniest surviving infants. In

fact, although the proportion of serious handicaps

among survivors did not increase significantly,

the increased absolute number of survivors resulted in a greater number of handicapped children (70).

Costs were estimated for all neonatal care and

for lifetime followup health care and other special services, such as institutional care or special

education. The results of the economic evaluation

performed by the Canadian group are shown in

table 16. For the group weighing 1000 to 1499

grams at birth, the incremental cost of neonatal

intensive care was $82,969 per survivor at hospital discharge. Similarly, for the 500- to 999-gram

birthweight group, the neonatal intensive care

program cost $142,929 per survivor.

By every economic measure, neonatal intensive

care for infants weighing 1000 to 1499 grams was

more cost-effective than neonatal intensive care

for infants weighing under 1000 grams. Projected

over a lifetime,1 the neonatal intensive care proI Neonatal intensive care requires the early expenditure of large

sums of money to achieve later gains. Therefore, a discount rate

of 5 percent was applied to costs, earnings, and effects (QALYs)

occurring in the future in order to convert future values to their

equivalent present value.

Table 16.– Measures of Economic Evaluation of

Neonatal Intensive Care for Very Low Birthweight

Infants (5 Percent Discount Rate), 1984a

Birthweight (grams)

Period 1000-1499 500-999

To hospital discharge: b

Cost/additional survivor. . . . $82,969 $142,929

To age 15 (projected):

Cost/life-year gained . . . . . . 8,506 17,012

Cost/QALY gainedc. . . . . . . . 10,737 55,917

To death (projected):

Cost/life-year gained . . . . . . 4,044 12,968

Cost/QALY gainedc. . . . . . . . 4,462 31,235

Net economic benefit

(Ioss)/live birth . . . . . . . . . . (3,626) (22,450)

Net economic cost/QALY

gained c 

. . . . . . . . . . . . . . . . . . 1,394 24,403

avalues were converted to 19& U.S. dollars from 1978 Canadian dollars.

bAll costs and effects occurred in Year one.

CQALY denotes quality-adjusted life-years.

SOURCE: M.H. Boyle, G.W. Torrance, J.C. Sinclair, et al., “Economic Evaluation

of Neonatal Intensive Care of Very -Low-Birlh-Weight Infants, ” N. Eng.

J, Med. 308(22):1330-1337, June 2, 1983.
59

gram cost $4,462 per quality-adjusted life-year

gained for the 1000- to 1499-gram birthweight

group and $31,235 per quality-adjusted life-year

gained for the under 1000-gram group. Borrowing from cost-benefit analysis, the researchers also

calculated net economic benefit (or loss) by taking into account the anticipated future earnings

of survivors. In this analysis, there was a net economic loss in employing neonatal intensive care

over nonintensive care for both weight groups.

However, for infants weighing 1000 to 1499 grams

the increased costs of treatment were very nearly

offset by increased lifetime earnings. When the

discount rate was set lower than 31⁄2 percent, the

net economic benefit per live birth was positive.

Not so for the birthweight group weighing under

1000 grams. Gains in survival and quality-adjusted

life-years were obtained at a considerable increase

in neonatal costs and subsequent health care costs.

These costs could not be repaid through lifetime

earnings.

CONCLUSIONS AND POLICY IMPLICATIONS

The results of the Canadian study raise a number of issues. One is whether the same conclusions

would be reached if the study were conducted

today. For the time period studied, the mortality, morbidity, and cost figures used by the Canadian group did not differ markedly from other

population-based and institutional reports for the

same birthweight groups. However, since 1977

there have been both substantial gains in survival

and increases in costs. During the period studied

by the Canadians, the risk of mortality declined

more rapidly for the 1000- to 1500-gram birthweight group than for smaller babies. Since then,

the most rapid reduction in mortality risk has been

for the 750- to 1000-gram birthweight group. (See

ch. 3.) Better rates of survival would tend to improve the cost-effectiveness of neonatal intensive

care, and this impact would be greater for the under 1000-gram birthweight group.

OTA calculated the incremental cost of neonatal intensive care in producing a survivor by using

the recent data on mortality and hospital costs

that are developed in this case study (table 17).

Baseline survival rates, prior to the introduction

of neonatal intensive care, were taken for the

years 1961 to 1965 and compared with the most

recent, available survivor rates, those for 1981 to

1985. OTA’s results are remarkably similar to

those found in the Canadian study. (Both tables

16 and 17 are in 1984 U.S. dollars. ) Compared

with the Canadian costs, OTA found the cost per

additional survivor to be about $3,000 more expensive for infants with birthweights between

1000 and 1500 grams and about $24,500 less expensive for infants with birthweights under 1000

grams. The impact of improved survival rates for

extremely low birthweight infants was very strong,

because the average hospital costs in the Canadian study for the under 1000-gram birthweight

group were less than one-half the average costs

used in the OTA calculation. If only mortality is

taken into account, the cost-effectiveness of neonatal intensive care relative to no special care

for the smallest babies (those under 1000 grams)

has improved since 1977.

Limitations of data prevented OTA from examining the implications of long-term morbidity on

costs in a separate cost-effectiveness analysis. The

proportion of NICU survivors with serious handicaps has remained stable since the Canadian

study, but the rate of severe disability increases

with decreasing birthweight. (See ch. 3.) The recent declines in mortality mean that, especially

among the under 1000-gram birthweight group,

Table 17.—Cost of Neonatal Intensive Care

Per Additional Survivor, 1984

Birthweight (grams)

1000-1499 500-999

Average hospital costa. . . . . . . $36,153 $ 49,617

Additional survivors per 1,000

live births from 1960

to 1980b 

. . . . . . . . . . . . . . . . . . 419 419

Cost per additional survivor . . $86,284 $118,418

aFrom table 4, mean of the average hospital costs per Infant reported by the three

groups of hospitals.

bFrom table g, change in inborn neonatal mortality rates per 1.~ Ilve births from

1961-65 to 1981-85.

SOURCE: Office of Technology Assessment, 1987
60

there are now both more normal survivors and

more handicap victims, (See figures 2 and 3 in ch.

3.) It is unclear how the new mix of survivors

would affect the economic equation.

Costs have increased since 1978, and these increases have outpaced inflation by more than 75

percent in the United States. Infants treated in neonatal intensive care use resources more intensively than previously, and resource use is inversely correlated with birthweight. (See ch. 2.)

These increases in medical care costs, though they

contribute to improved health outcomes, would

tend to decrease the cost-effectiveness of neonatal intensive care. Moreover, the lifetime costs for

custodial care for a severely disabled person have

risen too. A recent estimate of the cost for caring

for a severely handicapped child (in 1982 dollars)

is $22,590 per year (170).

In all likelihood the conclusions of the Canadian study would still pertain today. Neonatal intensive care results in both increased survival and

increased costs, Moreover, neonatal intensive care

becomes more expensive as it is employed in increasingly marginal cases.

One way to increase the cost-effectiveness of

neonatal intensive care is to try to identify which

newborns are most likely to survive, and, in particular, experience higher quality lives (14). For

example, because birthweight is such a powerful

predictor of both survival and morbidity, analysis of birthweight groups by 100 gram increments

can lead to refinements in the conclusions of the

Canadian group. Researchers in Rhode Island analyzed lifetime costs for infants weighing 500 to

1000 grams and born between 1977 and 1981

(180). Taking into consideration long-term therapeutic and custodial care for handicapped children as well as initial hospitalizations, they estimated costs in 1982 dollars ranging from $362,992

per survivor for infants with birthweights between

600 and 699 grams to $40,647 per survivor for

those weighing 900 to 999 grams. Their costbenefit analysis showed that when estimates of

lifetime earnings were added to the equation, only

infants with birthweights from 900 to 999 grams

had future earnings that exceeded total costs.

Such analyses help to refine the economic equations, but the question should not be whether to

deny care to any particular infant on the basis of

high costs. It is expected that a successful intervention like neonatal intensive care will add to

overall medical costs. Moreover, there are many

ethical, social, and legal reasons why intensive

care should not be withheld from a newborn, no

matter what its size and gestational age. (See ch.

5.) Most importantly, neonatologists are unanimous in stating that it is impossible to predict outcome at birth. Many healthy babies would be lost

if blanket policies of withholding care were promulgated. Doctors, in conjunction with parents, have

traditionally grappled with decisions about individual patients and they must continue to do so.

Data on cost-effectiveness can be one component

of what are, ultimately, value judgments.

Policymakers can more directly use the results

of cost-effectiveness analyses to guide priorities

in expenditures for health care. For example, it

is not clear that society is spending more per

quality-adjusted life-year for neonatal intensive

care than for other programs such as dialysis, kidney transplantation, coronary artery bypass surgery, or bone-marrow transplantion (14,186). In

such a comparative context, neonatal intensive

care can be judged to be more or less worth its

costs. Better cost-effectiveness information about

diverse programs can help both policymakers and

physicians make consistent and well-founded

choices.

Appendix A

Glossary of Acronyms and Terms

List of Acronyms

AHA —American Hospital Association

BPD —bronchopulmonary dysplasia

BC/BS —Blue Cross/Blue Shield

CEA —cost-effectiveness analysis

CPAP —continuous positive airway pressure

DRGs —diagnosis-related groups

ECMO —extracorporeal membrane oxygenation

HFV —high-frequency ventilation

HMO —health maintenance organization

IVH —intraventricular hemorrhage

MDC —major diagnostic category

NACHRI—National Association of Children’s

Hospitals and Related Institutions

NICU —neonatal intensive care unit

NIH –National Institutes of Health

OTA –Office of Technology Assessment (U.S.

Congress)

PEEP —positive end expiatory pressure

P r o —preferred provider organization

QALY —quality-adjusted life-year

RDS —respiratory distress syndrome

ROP —retinopathy of prematurity

SIDS —sudden infant death syndrome

Glossary of Terms

Antenatal transfer: The transport of pregnant women

to the appropriate level of care prior to delivery.

Assisted ventilation: Mechanical assistance in performing or controlling the breathing function.

Baby Doe rules: Federal regulations issued from 1982

to 1984 under Section 504 of the Rehabilitation Act

of 1973 that prohibited hospitals from withholding

nourishment or care from handicapped infants. The

Supreme Court ruled in 1986 that the 1973 act could

not be used to justify the regulations. Meanwhile

Congress passed the 1984 amendments to the Child

Abuse Prevention and Treatment Act that permitted

“reasonable medical judgement” to be used in making decisions about treatment for disabled newborns.

Birthweight: Weight of an infant at the time of delivery. Birthweight can be recorded in either pounds/

ounces or grams.

Birthweight-specific mortality rate: Deaths in a birthweight category per 1000 live births in the same

birthweight category.

Bronchopulmonary dysplasia: A chronic lung disease

in newborns, often defined by a characteristic

appearance of the lungs on X-ray and the use of

assisted ventilation for more than 4 weeks.

Case mix: A measure of the mix of cases being treated

by a particular health care provider that is intended

to reflect the patients’ different needs for resources.

Cerebral palsy: A paralysis of varying severity that

results from nonprogressive damage to the brain at

or around birth.

Congenital anomalies: Birth defects that result from

imperfect development during pregnancy.

Continuous positive airway pressure (CPAP): A respiratory therapy technique that prevents alveolar

collapse by keeping up positive pressure on the lungs

between breaths.

Cost-benefit analysis: An analytical technique that

compares the costs of a technological application to

the resultant benefits, with both costs and benefits

expressed by the same measure. This measure is

nearly always monetary.

Cost-effectiveness analysis (CEA): An analytical technique that compares the costs of a technology or of

alternative technologies to the resultant benefits,

with cost and benefits/effectiveness not expressed

by the same measure.

Cost saving: An economic concept referring to the results of cost-benefit analysis when the net benefit

is greater than zero.

Diagnosis-related groups (DRGs): A patient classification scheme based on the principal diagnosis, secondary diagnoses, surgical procedures, age, and discharge status of the patients treated in hospitals.

Extremely low birthweight: Birthweight of less than

1000 grams (2 lb 2 OZ).

Gestational age: The number of completed weeks

elapsed between the first day of the last normal menstrual period and the date of delivery.

Handicap rate: See serious handicap and moderate

handicap.

Health maintenance organization (HMO): A health

care organization that, in return for prospective per

capita payments, acts as both insurer and provider

of comprehensive but specified medical services.

Hydrocephalus: The distension of the head caused by

the excessive buildup of cerebral spinal fluid.

Infant mortality: Death in the first year of life. It includes neonatal mortality and postneonatal mortality.

Intracranial hemorrhage: Bleeding in the brain.

63
64

Intraventricular hemorrhage: Bleeding into the cerebral ventricles, small cavities within the brain that

secrete and convey cerebrospinal fluid.

Level I hospitals or facilities: Hospitals that provide

only normal newborn care under the regional system for perinatal services.

Level II hospitals or facilities: Hospitals in the regional

system for perinatal services that provide specialized neonatal care but lack some components and

expertise found in Level III facilities.

Level III hospitals or facilities: Hospitals in the regional

system for perinatal services that provide the most

sophisticated neonatal intensive care.

Low birthweight: Birthweight of less than 2500 grams

(5 lb 5 OZ).

Major diagnostic category (MDC): The 23 principal

divisions in the DRG patient classification scheme.

The diagnoses in each MDC correspond to a single

organ system or etiology and in general are associated with a particular medical specialty.

Mechanical ventilation: See assisted ventilation.

Medicaid: A federally aided, State-administered program of medical assistance for low-income people

meeting categorical requirements.

Moderate handicap: Disabilities that include moderate mental retardation (IQ or developmental quotient between 70 and 80).

Morbidity: The condition of being diseased or

disabled.

Neonatal intensive care: The 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: Deaths during the first 28

days of life per 1000 live births.

Neonate: A newborn infant less than a month old.

Neonatologist: A pediatrician specializing in newborn

care.

Neurodevelopmental outcome: A measure of neurological and developmental status.

Outliers: Hospital cases with statistically unusual

lengths of stay under the DRG patient classification

scheme.

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.

Postneonatal mortality: Death between the first 28

days and the end of the first year of life.

Postneonatal mortality rate: Postneonatal deaths (28

days to under 1 year) per 1,000 neonatal survivors.

Preferred provider organization (PPO): A form of

health care delivery system in which an agreement

is made between providers and purchasers that patients who seek medical care from the “preferred

providers” will obtain benefits such as reduced cost

sharing. In return for the potential increase in volume of patients, the preferred providers may agree

to discount their charges, to accept capitated payments, or to submit to enhanced utilization review.

Preterm infant: A newborn whose gestational age is

less than 37 completed weeks.

Prospective payment: Payment for medical care on the

basis of rates set in advance of the time period in

which they apply. The unit of payment may vary

from individual medical services to broader categories, such as hospital case, episode of illness, or person (cavitation).

Pulmonary surfactant: A substance in the lung that

reduces the surface tension along the alveoli and prevents the collapse of the pulmonary air spaces.

Quality-adjusted life-year (QALY): An economic

measure used in cost-effectiveness analysis to express

benefits/effectiveness.

Regionalization: The organization and coordination

of perinatal services, including a three-tiered system

of hospital care, by geographic region.

Respiratory distress syndrome (RDS): An acute respiratory disorder which, in premature infants, is

thought to be caused by a deficiency of pulmonary

surfactant. When RDS is in severe form, patients

often need mechanical assistance to breathe.

Retinopathy of prematurity (ROP): A retinal disease

afflicting premature infants that can lead to retinal

scarring, retinal detachment, and blindness,

Serious handicap: Disabilities that include severe mental retardation (IQ or developmental quotient below 70), cerebral palsy of significant degree, major

seizure disorders, or blindness.

Steroid treatment: A drug regimen administered to

pregnant women in preterm labor in order to accelerate fetal lung maturation.

Surfactant: See pulmonary surfactant.

Very low birthweight: Birthweight of less than 1500

grams (3 lb 3 oz).
Appendix B

Acknowledgments

The development of this case study was greatly aided by the advice and thoughtful review of a number

of people. Several individuals contributed unpublished data which permitted the calculation of recent estimates

on the costs and effectiveness of neonatal intensive care. The author and other OTA staff would like to thank

the following people:

Mary Ellen Avery

The Children’s Hospital

Boston, MA

Michael Boyle

McMaster University

Hamilton, Ontario

Philip Davidson

University of Rochester Medical Center

Rochester, NY

John M. Driscoll, Jr.

Columbia-Presbyterian Medical Center

New York, NY

Marvin Feuerberg

Office of Technology Assessment

Washington, DC

Susan Goldbecker

The Children’s Hospital at Albany Medical Center

Albany, NY

Patty Goldberg

Information Service Center

Baltimore, MD

Maureen Hack

Rainbow Babies and Children’s Hospital

Cleveland, OH

Elicia Herz

Office of Technology Assessment

Washington, DC

Jeffrey Horbar

The University of Vermont, College of Medicine

Burlington, VT

L. Stanley James

Columbia-Presbyterian Medical Center

New York, NY

John Kiely

Sergievsky Center

Columbia University

New York, NY

Howard Kilbride

Children’s Mercy Hospital

Kansas City, MO

Sharon Kovzelove

Children’s Hospital National Medical Center

Washington, DC

Ernest Kraybill

University of North Carolina Medical School

Chapel Hill, NC

Burton Kushner

University of Wisconsin Medical School

Madison, WI

John Muldoon

National Association of Children’s Hospitals and

Related Institutions

Alexandria, VA

Karen E, Pape

The Hospital for Sick Children

Toronto, Ontario

Ciaran S. Phibbs

Institute of Health Policy Studies

San Francisco, CA

Elaine Power

Office of Technology Assessment

Washington, DC

Richard Schreiner

Indiana University School of Medicine

Indianapolis, IN

Rachel Schwartz

National Perinatal Information Center

Providence, RI

Donald Shapiro

University of Rochester Medical School

Rochester, NY

Ann Stewart

University College London

London, Great Britain

George Torrance

McMaster University

Hamilton, Ontario

65
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