ASTHMA

MANAGEMENT

I N MINORITY

C HILDREN :

PRACTICAL I NSIGHTS FOR

CLINICIANS , RESEARCHERS 

AND P UBLIC HEALTH

PLANNERS

NATIONAL INSTITUTES OF HEALTH

NATIONAL HEART, LUNG, AND BLOOD INSTITUTE

ASTHMA

MANAGEMENT

I N MINORITY

C HILDREN :

PRACTICAL I NSIGHTS FOR

CLINICIANS , RESEARCHER

AND P UBLIC HEALTH

PLANNERS

NIH PUBLICATION

NO. 96-3675

NOVEMBER 1995

NATIONAL INSTITUTES

O F HEALTH

National Heart, Lung,

and Blood Institute
4

ASTHMA MANAGEMENT IN MINORITY CHILDREN
iii

CONTENTS

Asthma Management in Minority Children

Working Group Members .............................. v

Foreword ............................................................ vii

Introduction ......................................................... 1

Background ................................................... 1

Highlights of Practical Insights ..................... 2

Project Descriptions ............................................. 5

An Intervention for Hispanic Children

With Asthma ................................................. 5

A Self-Management Educational Program

for Hispanic Asthmatic Children .................. 6

A Childhood Asthma Program in

New York City Health Department Clinics ... 7

Neighborhood Asthma Coalition ................. 8

Community Interventions for Minority

Children With Asthma ................................ 10

Practical Insights: Clinical Notes ....................... 11

Patient Education and Management......... 12

Education for Health Professionals ............ 15

Practical Insights: Research Notes .................... 19

Pilot Studies ................................................. 19

Patient/Participant Identification and

Recruitment ................................................. 20

Patient/Participant Retention..................... 23

Staffing ........................................................ 24
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ASTHMA MANAGEMENT IN MINORITY CHILDREN

Questionnaires and Assessment

Measures...................................................... 24

Design and Assessment of Intervention

Delivery ........................................................ 26

Data Analysis and Missing Data ................. 29

Practical Insights: Public Health Notes............. 31

Planning Phase ............................................ 32

Implementation Phase................................ 33

Educational Content and Format ........ 33

Modalities of Implementation ............ 35

Recruiting, Training, and Retaining

Staff and Volunteers ............................ 37

Barriers to Implementation

of Intervention ..................................... 38

Appendix I: Additional Minority Asthma

Intervention Projects.................................... 41

Appendix II: Resources...................................... 43

Appendix III: Instruments ................................. 47
v

ASTHMA MANAGEMENT IN MINORITY CHILDREN

WORKING GROUP MEMBERS

Cynthia L. Arfken, Ph.D.

Washington University School of Medicine

David Evans, Ph.D.

Columbia-Presbyterian Medical Center

Edwin B. Fisher, Jr., Ph.D.

Washington University School of Medicine

Humberto A. Hidalgo, M.D.

University of Texas Health Science Center

Jean Hanson, R.N., M.S.N.

University of New Mexico School of Medicine

Floyd Malveaux, M.D., Ph.D.

Howard University College of Medicine

Robert B. Mellins, M.D.

Columbia-Presbyterian Medical Center

Shirley Murphy, M.D.

University of New Mexico School of Medicine

Carmen Ramos, M.D.

New York Bureau of Child Health

Cynthia S. Rand, Ph.D.

The Johns Hopkins Asthma and Allergy Center

Martha Selva, R.N., B.S.N.

University of Texas Health Science Center

Robert C. Strunk, M.D.

Washington University School of Medicine

Linda Sussman, Ph.D.

Washington University School of Medicine

Roslyn Sykes, Ph.D.

Washington University School of Medicine

Lera Thompson , M.S.P.H.

Howard University College of Medicine

Pamela R. Wood, M.D.

University of Texas Health Science Center

National Heart, Lung, and Blood Institute Staff

Ted Buxton, M.P.H.

Special Expert

National Asthma Education and Prevention

Program

Leslie Cooper, R.N., M.P.H., Ph.D.

Health Scientist Administrator/Epidemiologist

Division of Lung Diseases

Robinson Fulwood, M.S.P.H.

Coordinator

National Asthma Education and Prevention

Program

Suzanne Hurd, Ph.D.

Director

Division of Lung Diseases
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ASTHMA MANAGEMENT IN MINORITY CHILDREN

James Kiley, Ph.D.

Chief, Airway Biology and Disease Program

Division of Lung Diseases

Ellen Sommer

Public Affairs Specialist

Office of Prevention, Education, and Control

Virginia Silver Taggart, M.P.H.

Health Specialist Administrator

Division of Lung Diseases

R.O.W. Sciences, Inc., Support Staff

Lisa Caira

Maxine Forrest

Special thanks to the following for their input and

review of this document:

William C. Bailey, M.D.

University of Alabama at Birmingham

L. Kay Bartholomew, Ed.D., M.P.H.

University of Texas Health Science Center

Robin Bryan

Allergy and Asthma Network/Mothers of

Asthmatics, Inc.

Dolores Farr, R.N.

Healthy Babies Project

Jean G. Ford, M.D.

Harlem Hospital Center/Columbia University

Geraldine Mack

Healthy Babies Project

Guy S. Parcel, Ph.D.

University of Texas Health Science Center

Sydney Parker, Ph.D.

American College of Chest Physicians

Stanley J. Szefler, M.D.

National Jewish Center for Immunology and

Respiratory Medicine

Sara L. Their, M.P.H., C.H.E.S.

American Lung Association of Los Angeles

County

Sandra R. Wilson, Ph.D.

American Institutes for Research

Eileen Zeller, M.P.H.

Asthma and Allergy Foundation of America
vii

FOREWARD

The National Heart, Lung, and Blood Institute’s

(NHLBI) Division of Lung Diseases initiated a

request for applications in 1989 for demonstration

and education research programs to develop,

implement, and evaluate interventions to reduce

morbidity from asthma among African American

and Hispanic Children. Five projects were funded

under this 5-year program, titled “Interventions

for the Control of Asthma Among Black and

Hispanic Children.” The grantees are based at

Howard University in Washington, D.C.; Columbia University in New York City; The University

of Texas Health Science Center-San Antonio;

Washington University in St. Louis, Missouri; and

the University of New Mexico in Albuquerque.

The goals of this research effort were to develop

model, replicable programs to reduce asthma

morbidity, decrease inappropriate use of health

care resources, and enhance the quality of life of

African American and Hispanic children with

asthma. Some interventions included efforts to

increase the knowledge and change the behaviors

of health care providers, as well as those of

patients and their families and other groups

within the community. Approaches to mobilize

community resources to increase access to care,

integrate patient education into medical care, and

educate health professionals about asthma and its

management were encouraged.

The approaches used by each of the five grantees

in implementing their interventions varied

widely. Based on their experiences, a number of

insights have emerged about the design and

evaluation of educational and management

programs for asthma, strategies for recruiting

patients and staff, and techniques and resources

for community and professional education. These

“lessons learned” are presented herein as practical

tips for researchers, clinicians, and community

health leaders and/or program planners. Where

possible, the lessons are illustrated with specific

examples from one or more of the five projects.

However, some lessons were formulated through

consensus among the investigators, who met

three times in 1994 and 1995. The meetings also

included representatives from the NHLBI and

from the community.

This document is intended as a mechanism for

sharing the experiences of the five investigators in

developing asthma management interventions; it

does not contain study results. This information,

along with detailed information about study

methodology, is being published independently

by each of the investigators. Some results are

already available (see appendix II for a list of

publications).

The NHLBI’s National Asthma Education and

Prevention Program (NAEPP) will disseminate

this document. Established in 1989, the NAEPP

is charged with transferring asthma research

findings and scientific consensus to health

professionals, patients, and the public for appropriate adaptation into their health care practices

and individual lifestyles. The NAEPP’s Coordinating Committee, which consists of 36 medical,
viii

ASTHMA MANAGEMENT IN MINORITY CHILDREN

professional, and lay organizations that are

involved in asthma education and management

activities, provides effective channels for dissemination. One of the hallmarks of the NAEPP’s

broad-based activities conducted with coordinating committee members was publishing and

widely disseminating the 1991 Expert Panel

Report: Guidelines for the Diagnosis and Management

of Asthma.

A continuing challenge in asthma control efforts is

reaching minority populations. These populations

have some of the highest rates of prevalence,

emergency department use, and hospitalizations

from asthma. The NAEPP’s initiatives in this area

have included conducting professional education

sessions, distributing patient and public education

materials written in English and Spanish, and

conducting mass media campaigns for African

American and Hispanic populations.

It is hoped that the information in this document

will assist others in planning and implementing

asthma management programs in various settings

to help reduce morbidity and mortality from

asthma in minority populations.

Claude Lenfant, M.D.

Director

National Heart, Lung, and Blood Institute
1

BACKGROUND

Asthma is a major public health problem in

children, especially children living in poverty.

Children—those younger than age 18—have a

41 percent higher prevalence of asthma than the

general population (7.2 versus 5.1 percent in

1993) (National Center for Health Statistics,

1994a). This means that nearly 5 million children in the United States have an illness that

sometimes takes their breath away and limits

their activities (National Center for Health

Statistics, 1994a). In fact, children with asthma

miss an estimated average of about 1 full week of

school per year due to their illness, making

asthma one of the most common reasons for

school absences (Newacheck and Taylor, 1992).

Asthma is a major problem for African Americans. The prevalence of asthma in 1993 in

African Americans under age 45 was about 23

percent higher than in whites (National Center

for Health Statistics, 1994a). In 1992 the

hospitalization rate for African Americans was

more than 400 percent higher than the rate for

whites (National Center for Health Statistics,

1994b), and the age-adjusted asthma mortality

rate was 300 percent higher than for whites

(Kochanek and Hudson, 1995). African American children have a 24 percent higher prevalence

of asthma than white children, more limitation of

their activity due to asthma, and more frequent

hospitalizations from asthma (Weitzman et al.,

1992). Lack of access to medical care, poverty,

and delay in health-seeking behaviors are related

to poor asthma outcomes in African Americans

(Malveaux et al., 1993).

Some groups of Hispanic children are at risk for

asthma-related problems because of language

barriers, poverty, lack of access to medical care,

and culturally based beliefs about health and

illness. In addition, one subgroup within the

Hispanic population, Puerto Ricans, has much

higher rates of asthma and asthma mortality than

others. During 1982-1984, prevalence of asthma

in Puerto Rican children living in New York City

was significantly higher, at 11.2 percent, than any

other subpopulation studied to date (CarterPokras and Gergen, 1993). By contrast, the

prevalence of asthma within Mexican American

children was 2.7 percent, which is somewhat

lower than the general population (Carter-Pokras

and Gergen, 1993). The age-adjusted asthma

mortality rate for Puerto Ricans in 1979-1981

was also much higher (4 per 100,000) than the

rates for non-Hispanic whites (0.8 per 100,000)

and Mexican Americans (0.5 per 100,000)

(Carter-Pokras and Gergen, 1993).

The five minority asthma research projects

discussed in this report were initiated with the

goals of reducing asthma morbidity, decreasing

inappropriate use of health care resources, and

enhancing the quality of life of African American

and Hispanic children with asthma.

INTRODUCTION
2

ASTHMA MANAGEMENT IN MINORITY CHILDREN

HIGHLIGHTS OF PRACTICAL INSIGHTS

Many important insights have emerged from the

development and implementation of the five

projects. These insights or “lessons learned” are

diverse, both in content and applicability, and

have been organized into three sections: clinical

notes, research notes, and public health notes.

Individual lessons appear as bold statements that

are, in most cases, followed by specific illustrations from the projects.

The clinical notes section contains insights in two

general areas: patient education and management, and health professional education. The

research notes section, which is designed with the

novice researcher in mind, offers practical tips for

all stages of research, from pilot studies to

evaluation. The public health notes section

covers a variety of issues relevant to the planning

and implementation phases of minority asthma

interventions.

The grantees selected varied widely in their

approach to improving asthma care for minority

children. Projects focused on an urban community, a school system, a rural medical care system,

a residency training program, and a public health

clinic system. From this diversity, some common

insights emerged, such as:

1. Community-based and school programs need

to ensure that primary care providers who are

knowledgeable about asthma management

provide appropriate asthma care. Education in

the community or school alone is insufficient.

2. Clinicians should be trained to treat asthma by

(1) building their skills in assessment and

management, (2) providing an environment

that supports implementation of current

recommendations, and (3) encouraging

clinicians to address one or two aspects of selfmanagement at each visit. Traditional

continuing medical education (CME) lectures

are not enough to modify health care

providers’ behaviors.

3. Obtaining input from intended audiences (lay

and professional) during program planning can

maximize the appropriateness of intervention

strategies. Focus groups, needs assessments,

and pilot testing can result in better tailored

programs.

4. Educational interventions should address

attitudes, beliefs, behaviors, and skills of the

intended group, not just knowledge. Ethnic

and cultural appropriateness, reading level,

and language barriers are important factors to

consider.

5. Asthma patient education can be made simple

and brief so that clinicians will implement it.

6. To tailor education to patients’ needs,

clinicians should assess patients’ concerns

about asthma and asthma medicines through

open-ended questions and similar interview

approaches.

7. Clinicians should discuss with parents the

common problem that medications are often

inappropriately discontinued when the child

appears well.

8. Recognition should be provided to health care

professionals and patients who work to

improve asthma care or manage their asthma.

9. The number of patients retained in a study can

be increased through an honest, sensitive, and

understanding personal relationship with staff;

convenience; incentives; and pleasant and

rewarding experiences at followup visits.

These and other “lessons” will be elaborated upon

later in this report. The next section briefly

describes the five intervention studies from which

these lessons were learned.
3

References

Carter-Pokras OD, Gergen JP. Reported asthma

among Puerto Rican, Mexican American, and

Cuban children, 1982 through 1984. Am J Public

Health 83(4):580-582, 1993.

Kochanek KD, Hudson BL. Advance report of

final mortality statistics, 1992. Monthly Vital Stat

Rep 45(6) Suppl. (March 22). Hyattsville, MD:

National Center for Health Statistics, 1995.

Malveaux FJ, Houlihan D, Diamond EL. Characteristics of asthma mortality and morbidity in

African-Americans. J Asthma 30(6):431-437,

1993.

National Center for Health Statistics. Current

Estimates From the National Health Interview Survey,

1993. Series 10, No. 190. DHHS Pub. No.

(PHS) 95-1518. Hyattsville, MD, 1994a.

National Center for Health Statistics. National

Hospital Discharge Survey: Annual Summary, 1992.

Series 13, No. 19. DHHS Pub. No. (PHS) 94-

1779. Hyattsville, MD, 1994b.

Newacheck PW, Taylor WR. Childhood chronic

illness: prevalence, severity, and impact. Am J

Public Health 82(3):364-371, 1992.

Weitzman M, Gortmaker SL, Sobol AM, Perrin

JM. Recent trends in the prevalence and severity

of asthma. JAMA 268(19):2673-2677, 1992.

INTRODUCTION
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ASTHMA MANAGEMENT IN MINORITY CHILDREN
5

AN INTERVENTION FOR HISPANIC CHILDREN

WITH ASTHMA

Principal Investigator: Pamela R. Wood, M.D.,

Associate Professor of Pediatrics, University of Texas

Health Science Center (UTHSC)-San Antonio. CoInvestigators: Humberto Hidalgo, M.D., Department

of Pediatrics, UTHSC; Thomas Prihoda, Ph.D.,

Department of Pathology, UTHSC; Megan Kromer,

Ph.D., Instructional Development, UTHSC; William

Hendricson, M.S., Instructional Development,

UTHSC; Amelie Ramirez, Dr.P.H., Director, South

Texas Health Research Center; Yolan Marinez, M.A.,

Department of Pathology, UTHSC. Research Nurse:

Martha Selva, R.N., B.S.N., Department of Pediatrics,

UTHSC. Consultant: Guy Parcel, Ph.D., School of

Public Health, UTHSC-Houston.

The purpose of this study was to design, implement, and evaluate an intervention program for

Hispanic children with asthma that included both

physician and patient/family education components. The study questions were: (1) Will a

physician education intervention result in increased physician knowledge and improved

medical management for Hispanic children with

asthma? (2) Will a focused educational intervention for Hispanic children with asthma and their

families result in decreased morbidity and

improved quality of life?

Prior to enrollment of patients, 44 pediatric

resident physicians participated in an intervention, based on the NHLBI Expert Panel Report:

Guidelines for the Diagnosis and Management of

Asthma, that addressed the following areas:

physician knowledge, information-processing

skills, motivation, and the clinic environment.

Components of the intervention were seminars on

medical management, pocket cards with treatment algorithms, improved access to peak flow

meters and spirometry, an interactive computerbased program, and individualized feedback.

Physician knowledge was measured preintervention and postintervention using a 36-item

computer-based test. In addition, participants

were asked to rate their educational experience

for 16 pediatric topics, including asthma. Finally,

the effect of the physician intervention on specific

physician behaviors was assessed through medical

record review.

One hundred and forty-five children with asthma

(79 percent Hispanic), ages 6 to 18 years, who

receive care in a pediatric residents’ continuity

clinic, were enrolled. A research assistant interviewed parents and a research nurse interviewed

children using standardized questionnaires to

obtain information about health beliefs, reported

health behaviors, knowledge and attitudes about

asthma, morbidity, acculturation, and

sociodemographic factors. A research nurse

performed spirometry on each subject. Additional information was obtained by review of

medical records and school attendance records.

After baseline data were collected, patients were

randomized into treatment and control groups.

Treatment group patients and their families

participated in the patient education program,

which consisted of four separate 1-hour sessions:

symptoms of asthma, causes of asthma, medications, and peak flow. The four sessions took place

PROJECT DESCRIPTIONS
6

ASTHMA MANAGEMENT IN MINORITY CHILDREN

over a 6-week period, and each session was

conducted by a nurse educator. Culturally

sensitive educational materials included both

print (e.g., flip charts, take-home brochures) and

videotape materials. The videotapes featured

children from the clinic and highlighted what

they did to successfully manage their asthma. All

materials were developed in both English and

Spanish. Followup data were obtained by

interview, medical record review, and spirometry

at 6, 12, 18, and 24 months following enrollment.

Intervention and control group children were

compared for morbidity (number of emergency

department [ED] visits, hospitalizations, school

days missed, and days with impairment) and

quality of life (impact on family and functional

status), after controlling for confounding variables. Secondary data analysis will examine the

effect of the intervention on knowledge, reported

health behaviors, and postintervention spirometry. If effective, the physician education and

patient education programs will serve as models

for the implementation of similar programs in

outpatient clinic settings that serve Hispanic

children with asthma.

For additional information about the Texas

project, contact Pamela R. Wood, M.D., Associate Professor of Pediatrics, The University of

Texas Health Science Center at San Antonio,

7703 Floyd Curl Drive, San Antonio, TX 78284-

7808; the telephone number is (210) 270-3971.

A SELF-MANAGEMENT EDUCATIONAL

PROGRAM FOR HISPANIC ASTHMATIC CHILDREN

Principal Investigator: Shirley Murphy, M.D., Professor and Chair, Department of Pediatrics, University of

New Mexico (UNM). Co-Investigators: Jean Hanson,

R.N., M.N., Department of Pediatrics, UNM; Jodi

Lapidus, M.S., Department of Pediatrics, UNM;

Evelyn Oden, M.D., Medical Director, Children’s

Medical Services, Santa Fe, New Mexico.

The Children’s Medical Services of New Mexico

and the University of New Mexico Pediatric

Pulmonary Program together designed and

evaluated the impact of a new statewide comprehensive asthma program that provided medical

care and coverage for medical costs for lowincome children with moderately severe-to-severe

asthma. The specific aim of this project was to

determine whether comprehensive medical care

(CMC) plus an educational asthma self-management program that included home visits by

community lay educators (family educators) for

rural Hispanic children and their families would

have an impact on asthma morbidity, cost of

asthma care, and family adaptation.

A randomized block design was used with

random assignment of subjects by county of

residence to experimental groups of (1) CMC,

which was standard tertiary care with individual

patient education, or (2) CMC-Plus, which was

standard tertiary care combined with a structured, interactive group self-management

education program, Open Airways/Respiro

Abierto. In addition, CMC-Plus patients received

in-home education and intervention from community-based Hispanic family educators trained

in an empowerment model of family intervention,

in-home support, and asthma education. Medical

care for CMC and CMC-Plus was provided by the

University of New Mexico School of Medicine

Pediatric Pulmonary Division and in the local

communities in collaboration with and transferring care back to the primary care/referring

physicians.

The study tested the hypothesis that provision of

CMC-Plus, as compared with CMC alone, would

(1) reduce asthma morbidity in Hispanic children

with asthma as indicated by decreased ED visits,

hospitalizations, daily symptoms, and improved

pulmonary function parameters; (2) reduce

hospitalization and ED costs, but not decrease

costs of providing primary asthma care; (3)
7

reduce family stress, as measured by the

Parenting Stress Index and Impact on Family

Scale; (4) enhance self-management and selfefficacy; and (5) enhance self-reported satisfaction

with delivery of asthma-related health care

services, in both the tertiary and primary care

areas.

This project has important implications for other

States that are considering providing funding for

asthma care in that it will give insight into the

most cost-effective way to provide care for rural

children with asthma. The New Mexico Asthma

Project will also provide valuable insights into the

management of asthma in Hispanic and Native

American populations.

For additional information about the New

Mexico project, contact Jean Hanson, R.N.,

M.N., Department of Pediatrics, University of

New Mexico School of Medicine, 2211 Lomas

Boulevard, N.E., Albuquerque, NM 87131-

5311; the telephone number is 505-277-3072.

A CHILDHOOD ASTHMA PROGRAM IN NEW

YORK CITY HEALTH DEPARTMENT CLINICS

Principal Investigator: Robert B. Mellins, M.D.,

Professor of Pediatrics and Director, Pediatric Pulmonary Division, Columbia University College of

Physicians & Surgeons (CU). Co-Principal Investigator: Katherine Lobach, M.D., Assistant Commissioner for Child and Adolescent Health, New York

City Health Department, Director, Bureau of Child

Health (BCH), and Clinical Professor of Pediatrics,

Albert Einstein College of Medicine. Co-Investigators: David Evans, Ph.D., Assistant Professor of

Public Health, Department of Pediatrics, CU; Moshe

J. Levison, Ph.D., Associate Research Scientist,

Department of Pediatrics, CU; Bruce Levin, Ph.D.,

Division of Biostatistics, School of Public Health, CU;

Carmen Ramos-Bonoan, M.D., Deputy Director for

Medical Affairs, BCH; Ilene Klein, M.F.A., Deputy

Director for Operations, BCH; Caroline Donahue,

R.N., M.A., Deputy Director for Nursing Affairs, BCH;

Barry Zimmerman, Ph.D., Professor of Educational

Psychology, City University of New York Graduate

Center; Noreen M. Clark, Ph.D., Professor of Health

Education and Health Behavior, University of Michigan School of Public Health; Lucille Rosenbluth,

M.P.A., President, Medical and Health Research

Association of New York City, Inc.; Deirdre Burke,

M.P.H., Grants Management, Medical and Health

Research Association of New York City, Inc.; Sandra

Wiesemann, R.N., M.P.S., Project Coordinator,

Medical and Health Research Association of New

York City, Inc. Consultant: Marcia Pinkett-Heller,

M.P.H., Department of Health Education, Jersey City

State College.

Columbia University College of Physicians and

Surgeons (CU) and the New York City Department of Health, Bureau of Child Health (BCH),

the University of Michigan, City University of

New York, and the Medical and Health Research

Association of New York, Inc. (MHRA), cooperated in research to improve asthma care for

minority children with asthma in New York City.

BCH operated 40 clinics that provided primary,

preventive care to infants and children. More

than 80 percent of the clinic patients were

African American or Latino, and more than

90 percent were from minority groups. Registered children were assigned to their own pediatrician/nurse team and made regular scheduled

visits, following Child/Teen Health Plan (C/THP)

guidelines, for health assessment, diagnostic

screening, and preventive care. The clinics also

provided diagnosis, treatment, and followup of

acute illnesses as well as referral and coordination

by the child’s clinic team for care by other

providers. All visits and medications were

provided free to patients, and for many parents

without medical insurance, the BCH clinics were

their only source of continuing pediatric care.

Although the clinics have provided some care for

acute episodes of asthma in the past, most

children have been referred to other sources of

care. At the onset of the study, fewer than 2 percent of the children enrolled in BCH clinics had

a diagnosis of asthma in their clinic medical

records, suggesting that there were many unidentified cases of asthma in the patient population.

PROJECT DESCRIPTIONS
8

ASTHMA MANAGEMENT IN MINORITY CHILDREN

The goal of the program was to improve the

health status of inner-city African American and

Latino children with asthma by providing them

with a comprehensive system of preventive,

continuing care that included up-to-date shortand long-term pharmacologic treatment, family

health education, and community outreach. The

study examined the hypothesis that training to

create a comprehensive system of preventive,

continuing care, including medical care, family

health education, and community outreach, will

(1) attract and retain families who have children

with asthma in continuing care relationships in

the BCH clinics; (2) improve staff confidence,

therapeutic skill, and educational practices in the

diagnosis and treatment of childhood asthma;

and (3) improve the health status of patients and

the quality of life of their families.

Among the key evaluation criteria for the hypothesis were, respectively: (1) increased numbers of patients identified with asthma and

increased frequency of scheduled clinic visits for

asthma care; (2) improved staff self-efficacy,

increased dispensing of inhaled anti-inflammatory

therapy for children with moderate-to-severe

asthma, and better use of communications skills

to identify patient concerns and convey appropriate educational messages; and (3) improved

quality of life for families, reduction in morbidity

(days with limited activity and night sleep

disturbed by asthma symptoms), and decreased

use of emergency health care services for asthma.

An experimental research design was used to

evaluate the hypothesis and to determine whether

the comprehensive system of preventive, continuing care could be institutionalized within the

department of health. The project was carried

out in two phases. In phase I, program faculty

taught the clinic staff to provide comprehensive

care for asthma and assessed the impact of this

education on attracting families to continuity of

care, changing staff practice behavior, and

reducing morbidity. In phase II, the researchers

made the comprehensive care system selfsustaining within the department of health by

demonstrating that the same outcomes could be

achieved when BCH physicians and nurse

supervisors who were trained in phase I taught

staff from the clinics not included in phase I.

For additional information about the New York

project, contact Robert B. Mellins, M.D., Director, Pediatric Pulmonary Division, Department of

Pediatrics, Columbia-Presbyterian Medical

Center, Babies and Children’s Hospital of New

York, BHS 101, 3959 Broadway, New York, NY

10032, or David Evans, Ph.D., Assistant Professor of Pediatrics, Director, Asthma Research

Program, Department of Pediatrics, ColumbiaPresbyterian Medical Center, Babies and

Children’s Hospital of New York, BHN 807,

3959 Broadway, New York, NY 10032. Dr.

Mellins can be reached at (212) 305-6551; Dr.

Evans can be reached at (212) 305-6732.

NEIGHBORHOOD ASTHMA COALITION

Principal Investigator: Edwin B. Fisher, Jr., Ph.D.,

Professor of Psychology and Medicine, Director,

Center for Health Behavior Research, Washington

University School of Medicine (WU). Co-Principal

Investigator: Robert C. Strunk, M.D., Professor of

Pediatrics, Director of Division of Allergy and Pulmonary Medicine, Department of Pediatrics, WU.

Project Director: Linda Sussman, Ph.D., Research

Instructor in Medicine, Research Associate in Anthropology, WU. Investigators: Cynthia L. Arfken, Ph.D.,

Research Assistant Professor of Medicine, WU; Janice

Munro, M.Ed., Center for Health Behavior Research,

Department of Medicine, WU; Roslyn K. Sykes,

Ph.D., Visiting Research Assistant Professor of

Medicine, Associate Professor, School of Nursing,

Southern Illinois University at Edwardsville. Collaborators: Shirley Bascom; Lynn P. Hert, R.N., M.S.;

Dorothy Harrison, M.S.W.; Sally Haywood, M.P.A.,

L.C.S.W.; and Nancy W. Owens, M.Ed., Grace Hill

Neighborhood Services.
9

The Neighborhood Asthma Coalition was

developed as a collaboration of Grace Hill

Neighborhood Services in St. Louis and researchers at Washington University with the goal of

reducing morbidity from asthma and increasing

the extent to which children with asthma in lowincome, African American neighborhoods lead

full, active, normal lives. Other aims were to

increase understanding of how a neighborhood,

peer-based program may encourage better

asthma care and quality of life among lowincome, African American children with asthma

as well as children from other minority or

underserved groups.

Organized around Neighborhood Wellness

Councils in each of four predominantly African

American and low-income neighborhoods in St.

Louis, the Neighborhood Asthma Coalition

provided a wide range of activities and promotional events to raise neighborhood understanding of asthma and to engage children with

asthma, their friends, and their families in

educational activities stressing three key concepts: take asthma seriously; treat asthma

symptoms with asthma medication; and when

symptoms persist, get help. Additional educational events expanded on these key concepts and

included attention to triggers, self-monitoring

and self-management according to symptoms,

and other curricular elements drawn from Open

Airways. Neighborhood residents were trained

and employed to assist with the program and,

especially, to provide individualized basic asthma

education and support to children with asthma

and their caregivers. The Neighborhood Asthma

Coalition established a wide range of programs

and activities to pursue its goals. Highlights

included training neighborhood residents to work

as CASS workers (“Change Asthma through

Social Support,” a name chosen by Neighborhood

Wellness Councils); asthma education activities

carried out by parents in neighborhood schools

and churches; and an innovative, neighborhoodbased asthma summer camp that involved family

members and friends as well as children with

asthma themselves.

Practicing pediatricians serving the neighborhoods have participated in a Physicians’ Advisory

Board. This group has reviewed levels of care,

especially regular, nonacute care available in the

neighborhoods, and developed mutually agreedupon standards for acute and regular asthma

care. The board also serves as a point of contact

between the neighborhood-based program and

professionals. The emergency department staff of

St. Louis Children’s Hospital developed a

“1...2...3...Plan” for asthma patients that emphasizes primary care followup of emergency visits as

a way of prompting care through primary

providers.

A quasi-experimental cohort design was used.

Children from study neighborhoods were compared with children from sociodemographically

comparable neighborhoods in St. Louis. The

study tested the hypothesis that reductions in

morbidity, increases in normal activities, and

reductions in interference of asthma with daily

life would be greater in experimental than in

control neighborhoods. Outcome/evaluation

criteria included utilization of emergency and

routine asthma care (by provider records as well

as parents’ reports), symptoms of asthma (by

parents’ reports), asthma management practices

(parents’ reports), the extent to which children

led normally active lives, and the extent to which

asthma interfered with children’s and families’

routine activities.

For additional information about the St. Louis

project, contact Edwin B. Fisher, Jr., Ph.D.,

Professor of Psychology and Medicine, Director,

Center for Health Behavior Research, Washington University School of Medicine, Suite 6700,

4444 Forest Park Boulevard, St. Louis, MO

63108; the telephone number is (314) 286-1901.

PROJECT DESCRIPTIONS
10

ASTHMA MANAGEMENT IN MINORITY CHILDREN

COMMUNITY INTERVENTIONS FOR MINORITY

CHILDREN WITH ASTHMA

Principal Investigator: Floyd J. Malveaux, M.D.,

Ph.D., Dean, College of Medicine, Howard University.

Co-Principal Investigator: Cynthia S. Rand, Ph.D.,

Associate Professor of Medicine, The Johns Hopkins

Asthma and Allergy Center. Project Director: Lera

Thompson, M.S.P.H., Department of Microbiology,

Howard University College of Medicine. Investigators: Arlene Butz, R.N., Sc.D., Associate Professor,

Graduate Instructor of Nursing, School of Nursing,

Johns Hopkins University (JHU); Peyton Eggleston,

M.D., Professor of Pediatrics, Department of Pediatric

Allergy and Immunology, School of Medicine, JHU;

Karen Huss, R.N., D.N.Sc., Postdoctoral Research

Fellow, School of Nursing, JHU.

This project was designed to test the effectiveness

of a school-based asthma education intervention,

a community health worker program, and a

combination of the two in reducing the number

of ED visits, hospitalizations, and days of restricted activity among African American children with asthma in Washington, D.C., and

Baltimore, Maryland.

Forty-two elementary schools (21 in Washington

and 21 in Baltimore) were selected from areas

with predominately African American populations to participate in this project. The schools

were randomized into one of four study groups.

Two cities were chosen to implement this project

because their size and proximity allowed the

selection of a large enough sample to test a fourgroup design and because comparisons between

outcomes in the two cities provided valuable data

on the generalizability of this study’s findings

across cities and school districts.

The selected schools were randomized to either a

control group, a school-based asthma education

program, a community-based health worker

program, or combined school-based education

and community health worker programs. The

two programs lasted 6 months.

In the asthma education intervention, a sixsession curriculum was offered to elementary

school children in grades 1 through 6. In this

program children were taught by health educators trained by program staff. The program was

designed to increase the child’s as well as the

family’s knowledge about asthma and confidence

and skills needed to manage asthma.

In the community health worker intervention,

trained individuals from the community interacted with the families of the children enrolled in

the program to assist in managing the child’s

asthma. The community health workers conducted home visits on a regular basis to offer

advice on environmental issues and the development of an asthma action plan.

The primary aim of this study was to answer the

following questions: (1) Can a school-based

asthma education program set in the inner-city

schools increase children’s asthma knowledge and

skills, increase self-efficacy, decrease school

absenteeism, and increase academic performances

among African American children? (2) Can a

community-based health worker program

increase preventive health care utilization,

increase use of a primary care provider, decrease

ED visits, decrease acute asthma episodes, and

increase asthma knowledge and skills among

African American children? (3) Can a combined

intervention that addresses both asthma education and community health care access and

utilization significantly improve on the separate

interventions’ ability to decrease asthma morbidity and related problems?

Outcome measures were utilization of emergency

department, number of hospitalizations, asthma

symptoms/asthma severity, academic performance, and asthma knowledge and skills.

For additional information about the Washington, D.C./Baltimore project, contact Lera

Thompson, M.S.P.H., Project Director, Howard

University College of Medicine, Department of

Microbiology, Room 3010, 520 W Street, N.W.,

Washington, D.C. 20059; the telephone number

is (202) 806-4322.
11

Effective management of asthma requires regular

visits to a physician, patient education, adherence

to recommended medications, environmental

control, and objective measurements of lung

function. The researchers were faced with the

challenge of getting both clinicians and patients

to change the way they manage asthma. Lessons

researchers learned in responding to this challenge are described in this section.

PRACTICAL INSIGHTS:

CLINICAL NOTES

KEY LESSONS LEARNED

Patient Education and Management

■ Patient education should include information about (1) the chronicity of asthma, (2) its

potential to be fatal, (3) environmental control measures, (4) differences between medications,

and (5) objective measures of lung function.

■ A brief, simple approach can be useful, particularly in an emergency department.

■ Patients should be provided with clear instructions for asthma self-management. A contract

between doctor and patient can clarify expectations.

■ Clinicians should respect the cultural beliefs of minority patients and design interventions that

are culturally appropriate.

■ Clinicians should recognize and address parents’ reluctance to provide daily or frequent

medication to their children if their children appear to be well.

Education for Health Professionals

■ Input should be sought from health professionals targeted for education.

■ Convenient, user-friendly approaches enhance health professional education. Traditional

lectures are insufficient.

■ Graphic presentation of treatment plans, such as through flow charts, are useful in teaching

asthma management to health professionals.

■ Strong administrative and supervisory staff support is important in interventions to improve the

delivery of asthma care in health systems.

■ An advisory board of community health professionals can help promote continuity of care.
12

ASTHMA MANAGEMENT IN MINORITY CHILDREN

• Patients should be educated about asthma

medications by (1) teaching them to

distinguish medications used to treat

chronic asthma (anti-inflammatory

medications) from those used to treat acute

episodes (short-acting inhaled beta2

-

agonists) and (2) clarifying and repeating

times, doses, and amounts of all

medications (right medications, right use,

including use of a metered-dose inhaler).

Researchers in the New Mexico project

described medications as treating the quiet

(chronic) parts of asthma (i.e., inhaled steroids,

nedocromil, cromolyn) and the noisy parts of

asthma (inhaled beta2

-agonists).* The Texas

project described these medications as ones

that prevent symptoms and ones that treat

symptoms.

Other strategies to help patients understand

the difference between bronchodilator and

anti-inflammatory medicines include (1)

having patients bring all medicines to each

visit, (2) using special labeling, and (3) having

patients describe their medication use by

asking them when they take medications

during their daily routine (not simply how

many times a day they use the medicine).

• Patients of appropriate age (at least age 5)

and ability should be taught how to use a

peak flow meter and how to monitor

symptoms.

(See public health notes section, page 34, for a

description of the simplified messages used in the

St. Louis community program.)

Culturally and linguistically appropriate

approaches to patient education are critical.

Asking a few open-ended questions to assess

the patient’s concerns about asthma and

asthma medicines can help the clinician to

PATIENT EDUCATION AND MANAGEMENT

Patient education can be brief and simple. A

few key points should be emphasized:

• Patient education should include simple

explanations of the chronicity of asthma.

• Asthma education should raise expectations

of a normal, active life but also point out

that asthma episodes can be fatal if the

disease is not kept under control.

• Patients should be encouraged to implement

environmental control measures, such as

avoiding exposure to tobacco smoke in the

home or car, dust control, and having no

warm-blooded pets in the home.

All projects found

that cigarette

smoking was more

prevalent than

expected among

parents of asthma

patients. Fifty percent of patients were exposed

to smoking at home. During every visit,

patients should be asked who is smoking and

where. People should be encouraged not to

smoke in the car or at home. The video used in

the Texas project, “Cigarette Smoking and

Asthma: A Bad Combination,” was useful in

communicating the effects of smoking on

asthma.

Community health workers visiting the home

had an impact on the home environment in

Washington, D.C./Baltimore. The workers

identified environmental risks such as carpeting

(which often cannot be removed because the

family either lives in rental property or cannot

afford to have it removed), cockroach

infestation, mold, and rodents.

It is important to inquire about pets. Sometimes asking the names of the patients’ pets

will elicit information.

* Concept adapted from video “Wheeze World,” Allergy and Asthma Network/Mothers of Asthmatics, Inc.

Patient education can be

brief and simple so that

clinicians will implement it.
13

tailor health education and the therapeutic

program to the needs of the patient.

The Washington, D.C./Baltimore researchers

found that the term “triggers” connoted images

of violence for some children. Substituting the

phrase “things that start asthma attacks” for

“triggers” helped avoid misinterpretation. The

Texas researchers used the phrase “causes of

asthma problems” to avoid misunderstanding of

the term “triggers.”

Clinicians should be aware that some cultural

beliefs may promote the use of “alternative

medicine.” New Mexico researchers found that

30 percent of patients used alternative therapies

for asthma such as chihuahua dogs, curanderos,

acupuncture, and herbal preparations. The New

Mexico project recommended inquiring about

alternative treatments and not invalidating the

remedies. Texas and New Mexico researchers

found that it is important to negotiate care and

the use of alternative treatments.

In the New York project, participation of staff

members who spoke the language of the clinic

population was extremely important in understanding the reasons behind nonadherence to

recommended protocols.

It is important for clinicians to provide

patients with clear, written, understandable

instructions on asthma management at home.

A contract signed by the doctor and patient

can clarify expectations.

In New York, written forms for providing easily

understood long-term treatment plans were used

and appreciated by both physicians and patients

(see appendix III). The form enables the physician to outline a long-term treatment plan that

helps patients to make adjustments as symptoms

change. Treatment plans placed on the refrigerator door remind families of the specific recommendations by the physician and when to call the

clinic or go to the emergency department for

Written instructions are helpful to patients.

immediate care. If good control is maintained, the

treatment plan provides recommendations for

reducing medications.

The New Mexico researchers showed that patients

who had a peak flow meter, clear instructions for

its use, and an asthma action plan (see appendix

III) were able to manage their asthma effectively,

despite living far from medical care services.

Initially, however, not all patients took the New

Mexico program seriously. Children’s Medical

Services staff had patients sign a contract that they

would perform all the management methods

recommended by the medical staff. It was especially useful for patients who had not been taking

their medications. The researchers also found

contracts useful for dealing with smoking in the

home.

Objective measures (peak expiratory flow rate

[PEFR] and/or spirometry) are valuable for

monitoring the management of asthma and can

be used in a variety of ways with children 5

years of age or older.

The more severe the asthma, the more likely the

patients will use a peak flow meter regularly.

However, it is often unrealistic to expect patients

to do peak flow monitoring every day of their life.

Patients can use PEFR episodically to assess acute

symptoms. Those who live a great distance from

PRACTICAL INSIGHTS: CLINICAL NOTES

PHOTOGRAPH NOT AVAILABLE
14

ASTHMA MANAGEMENT IN MINORITY CHILDREN

at every clinic visit. As a result, medication could

be adjusted accordingly. In addition, the spirometry readings were an important source of

feedback to families.

Clinicians should inquire about patients’ use

of over-the-counter medications.

Washington, D.C./Baltimore and St. Louis

researchers found that a high percentage of

patients used over-the-counter cough medicines

and decongestants to treat asthma. New Mexico

researchers found that many asthma patients

used Primatine Mist.

It is important that patients be able to afford

or be provided with medications and

equipment for acute asthma management at

home.

In New York, a loaner program for nebulizers was

created for families who could not afford to

purchase them. The patients returned the

equipment in good condition. In New Mexico,

because of the distances from health care, everyone was provided a nebulizer and prednisone for

handling emergency situations.

Even though asthma is a chronic disease,

many parents discontinue giving medications

when the child appears well.

The Washington, D.C./Baltimore researchers

found that many children were on inappropriate

regimens and that their families were not knowledgeable about asthma prevention. Approximately half of the children were responsible for

their own medication (i.e., parents did not

supervise the taking of medicine). A large

percentage of the families used the emergency

department for primary asthma care; thus,

ongoing asthma care was problematic. Many

parents thought it was unnecessary to give

medicine to children who were not symptomatic.

This belief may be a major barrier to the continued use of appropriate medication.

Spirometry is a valuable tool for monitoring asthma

management.

care can provide their PEFR measurement to the

physician over the telephone, which will enable

the physician to assess the severity of the episode.

In New Mexico, peak flow measurements were

found to be invaluable for communicating to the

physician the severity of the episode and the

response to medications.

In addition to episodic measurements, patients in

New Mexico were asked to monitor PEFR for 2

weeks before coming to the clinic. They were

called and given reminders on fluorescent selfstick notes to remind them to carry out this task.

This 2-week monitoring period gave a better

picture of the patients’ asthma than one measure

of lung function at the clinic.

New Mexico presented pulmonary function test

numbers to patients like grades in school to

indicate what was a “good,” “bad,” or passing

number (e.g., 60 percent=F, 80 percent=B).

Flow volume loops were shown to patients so they

could have a visual indication of their asthma

severity. The Texas researchers used a simpler

approach and told patients that a FEV1

 under

80 percent is a sign of trouble.

Clinicians in the New Mexico project performed

spirometry on every child 6 years of age or older
15

Ways to help parents continue to give the medications include frequent contact (e.g., telephone

calls, home visits), objective monitoring (PEFR

and symptom diary), and repetition of educational

messages. In St. Louis, for example, trained

neighborhood residents maintained contact with

parents to encourage ongoing adherence and

regular care, remind them of program events and

opportunities, and provide support and assistance

in dealing with asthma and other problems in

their lives.

In the New York program, children on daily

medication were instructed to maintain the

program for a minimum of 2 months and preferably until the child had no chest complications

when he or she had had several colds.

Patients who work to manage their asthma

should be recognized for their efforts.

In New Mexico, graduation certificates for

completing the 2-year project were given to

patients to affirm their progress in managing their

asthma. The St. Louis project included a graduation program with certificates and T-shirts bearing

the program logo on the last day of asthma

summer camp.

Strategies to maximize the efficiency of asthma

education and care are beneficial for primary

care physicians and clinics.

In some of the New York study clinics, half-day

sessions devoted to patients with asthma helped

the staff treat asthma more effectively and efficiently. This approach also enabled educational

sessions to be conducted for families and other

caregivers using the Open Airways program.

Primary care physicians in rural New Mexico also

indicated that their staff was too busy to conduct

lengthy patient education. The physicians wanted

a few important points that their staff could

emphasize and reinforce, perhaps in a flash-card

format.

Rather than providing extensive education,

emergency care providers may review selected

key points and encourage patients to obtain

regular outpatient care.

Researchers in St. Louis recognized that time

constraints on personnel and the understandable

distress of many patients and families can block

effective asthma education in the emergency

department. A solution to this problem was a

simple plan known as the “1...2...3 Plan” (see

appendix III). This

plan lists specific

steps for taking

preventive and

rescue medication,

steps for responding to warning

signs of an asthma

episode, and

encouragement to

secure an appointment for regular

followup care within 72 hours of the emergency

department visit.

EDUCATION FOR HEALTH PROFESSIONALS

Educational interventions for health care

providers should be based on input from the

providers.

The Texas researchers obtained input from the

targeted physicians on their perceived needs and

preferred instructional methods through several

focus groups. Investigators solicited input and

modified the program on an ongoing basis as

participants advanced in knowledge and as new

participants entered the program.

The New York investigators assessed the Bureau

of Child Health clinic staff’s perceptions about

the need for changes in asthma care and the

feasibility of implementing changes. The researchers found that many providers viewed

PRACTICAL INSIGHTS: CLINICAL NOTES

Rather than providing

extensive education,

emergency care providers

may review selected key

points and encourage

patients to obtain regular

outpatient care.
16

ASTHMA MANAGEMENT IN MINORITY CHILDREN

asthma as an episodic disease requiring treatment

of symptoms as they occurred. The providers

were reluctant to accept the concept of asthma as

a chronic disease that requires preventive care,

and they feared that doing so would result in

unmanageable increases in patient load. To

respond to these

concerns, the

investigators

focused on strategies to (1) help staff

link the goals of

continuing care for

asthma to the

bureau’s preventive

care mission; (2) help staff identify and resolve

organizational problems that blocked acceptance

of the new approach to asthma care; and (3)

involve all staff members in planning how to

implement the program so that the staff of each

clinic would learn to function as a team and

develop a sense of ownership of the asthma

program.

The best approach to training clinicians to

treat asthma involves building skills in

assessment and management, providing an

environment that supports implementation of

current recommendations (e.g., access to peak

flow meters and to personnel who can assist in

training families), and encouraging clinicians

to address one or two aspects of selfmanagement at each visit, rather than

attempting to change behaviors all at once.

User-friendly, convenient education

approaches can also help. Traditional

continuing medical education (CME) lectures

are not enough to modify health care

providers’ behaviors.

The Texas project’s educational intervention for

physicians included three hands-on seminars that

covered the following content areas: spirometry

and peak flow, stepwise use of medications, and

symptom recognition and elimination of triggers.

During the spirometry and peak flow session,

physicians actually performed spirometry and

then interpreted the results. They calculated

their own predicted peak flow value and had an

opportunity to practice using peak flow meters.

During the medications seminar, they had an

opportunity to observe and then practice the

correct technique for using a metered-dose

inhaler, and they acquired experience handling

several different spacer devices.

An effective computer-based education program

was developed in the Texas project; however, in

conducting their physician education program,

the Texas researchers found that it was essential

to schedule specific time blocks for physicians to

receive instruction. Physicians were unlikely to

complete certain aspects of the program (such as

computer-based instruction) independently unless

specific times had been scheduled for them to do

so.

New Mexico researchers believed one of their

most effective strategies for physician education

was collaborative evaluation of patients by

primary care physicians and program specialists.

This was done in the office of the private practitioners because these physicians were too busy to

go to the researchers’ Albuquerque clinic to see

patients and could not afford a whole day out of

their offices. Older as well as younger physicians

were willing to participate and adapt their

asthma management practices.

It is also important to provide education for more

than just physicians; other clinical and office staff

must also know what to emphasize during

asthma education sessions and can reinforce the

recommendations and instructions to families.

New York investigators found that patients were

sometimes more comfortable discussing problems

and seeking help from nonprofessional clinic staff

(e.g., entry clerks or lab technicians) than they

were with doctors and nurses. For this reason,

the entire clinic staff took part in the intervention

training.

Traditional continuing

medical education (CME)

lectures are not enough to

modify health care

providers’ behaviors.
17

Simplified and convenient prompts and

reference material (e.g., flow charts) are

particularly useful educational tools for health

care providers.

Physicians targeted in the Texas project indicated

that pocket cards and hands-on seminars were

the most beneficial components of their asthma

education. The Washington, D.C./Baltimore

investigators found tear-out action plans and

medication sheets to be useful resources for

practitioners.

Just providing the NAEPP’s Expert Panel Report:

Guidelines for the Diagnosis and Management of

Asthma is not enough. The guidelines need to be

simplified and instruction provided (for example,

as in the flow sheets in the NHLBI/WHO workshop practical guide; see appendix III).

Physicians may not be receptive to using

forms to document patients’ visits.

Although printed history and physical examination forms were helpful in the New Mexico

project (see appendix III), the New York investigators found that medical record forms they

devised to guide physicians through the process

of initial and continuing visits for asthma were

not enthusiastically received. Most of the physicians preferred to use a blank form for recording

notes.

Health care professionals should be recruited

and trained to teach other providers about

asthma management.

Clinic staff members who had received training

from the New York program staff were able to do

an excellent job of training the staff of other

clinics in the Bureau of Child Health. Clinic staff

members who served as trainers needed considerable support initially from the investigators in

learning to deliver the program. They were

somewhat anxious about being able to successfully carry out the training program with their

peers, and they did not initially realize the degree

of teamwork and

rehearsal necessary

to carry out the

program. With

experience, however, the trained

staff members

became confident

and skilled educators, and their

teaching of the program was received enthusiastically.

Incentives, including the provision of CME

credits for physicians, were helpful in getting

physicians to participate in the New York program. St. Louis gave CME credits for physicians

and continuing education units for nurses who

attended their yearly asthma conference.

Recognition should be provided to health care

professionals and other workers who strive to

improve asthma care.

In New York, a graduation ceremony at which

senior members of the health department were

present was held to award individual and

clinicwide certificates for completion of the

program. This helped to increase morale and

reinforce active participation by the staff.

Interventions to improve the delivery of

asthma care in health systems are enhanced by

strong administrative and supervisory staff

support.

The presence of influential administrative and

supervisory staff at all of the intervention sessions

in the New York program emphasized the

importance of the program to the Bureau of

Child Health and increased the clinic staff

members’ motivation to initiate the program in

their clinics. Key staff members were instrumenPRACTICAL INSIGHTS: CLINICAL NOTES

Interventions to improve

the delivery of asthma care

in health systems are

enhanced by strong

administrative and

supervisory staff support.
18

ASTHMA MANAGEMENT IN MINORITY CHILDREN

tal in helping clinicians link the goals of continuing care for asthma to the bureau’s mission of

providing preventive pediatric care. Having

administrators present also helped resolve organizational issues that blocked acceptance of the new

approach to asthma care, such as concerns about

keeping up with scheduled appointments and

coping with large numbers of new patients.

The Texas investigators found that starting their

physician education program with supervising

faculty and fellows allowed a consistent approach

to patient management at all provider levels and

enabled consistent information and feedback to

be given to residents in clinics.

A community health professionals advisory

board can be useful in promoting continuity

of effective asthma care.

The St. Louis investigators recruited a group of

leading neighborhood health care providers to

function as a Physicians’ Advisory Board. The

board members met regularly to identify problems and ways to improve the provision of

asthma care within specific neighborhoods. They

reviewed data generated by the research project

as a nonthreatening, nonjudgmental approach to

identifying problems for discussions. A

physician’s guide, which included patient educational materials for use in outpatient settings, was

developed with input from the Advisory Board

and based on educational materials from the

Childhood Asthma Management Program. In

addition, an annual joint community professional

asthma conference, organized by the board in

collaboration with program staff, volunteers, and

children with asthma and their parents, provided

education for physicians and other professionals,

as well as parents, children, and neighborhood

volunteers and staff.

References

National Heart, Lung, and Blood Institute,

National Asthma Education Program. Expert

Panel Report: Guidelines for the Diagnosis and

Management of Asthma. Bethesda, MD: U.S.

Department of Health and Human Services,

1991; NIH Pub. No. 91-3042.

National Heart, Lung, and Blood Institute.

Asthma Management and Prevention: A Practical

Guide for Public Health Officials and Health Care

Professionals. Bethesda, MD, in press.
19

The investigators from the five projects identified

key points that would be useful in planning

intervention research studies for minority populations. Practical tips for developing demonstration

and education research projects are described

below.

PILOT STUDIES

Prior to beginning an intervention, it is

advisable to conduct a needs assessment (e.g.,

focus groups) and pilot studies to address

questions related to recruitment strategies,

assessment measures, design of the

intervention, and followup strategies. Dealing

with these issues in advance can save time and

resources during the intervention.

The Washington, D.C./Baltimore researchers

piloted all phases of their project, including

questionnaires, curricula, and forms used by the

community health workers. Investing time and

attention in a needs assessment and pilot phase,

for example, allowed the A+ Asthma Club to be

designed from the beginning with consideration

for logistical constraints (e.g., not having chalk

boards or other equipment in the classroom).

The needs assessment also indicated that separate

sessions for children in the upper and lower

elementary grades were necessary. Focus groups

confirmed the need to replace traditional asthma

education jargon with vocabulary more appropriate to the intended audience.

In pilot studies, the New York investigators

found that a traditional continuing medical

education program in current concepts of asthma

therapy and patient education was not effective

by itself in changing clinic staff health behavior.

The pilot studies identified several barriers to the

implementation of the program: staff concerns

(e.g., fears that they would be overwhelmed by

the influx of patients with asthma), misperceptions about the pathogenesis and treatment of

asthma, difficulties in accommodating the

preventive aspects of asthma control, and deficits

in the ability to communicate effectively with

patients and families. The intervention was then

revised to involve all staff members in planning

how to implement the intervention and to use

techniques that fostered teamwork among the

individual clinic staff members.

The New Mexico project pilot-tested several

different education programs, which was helpful

in selecting an appropriate format. Data collection instruments were also extensively pilottested and refined.

Texas investigators had the opportunity to test

methods of identifying and recruiting eligible

study participants during a previous study of

morbidity in Hispanic children with asthma.

They found that patient registries could be used

to identify potentially eligible subjects and that

further screening and recruitment could be done

by telephone or in face to face interviews. In

addition, it was found that several telephone

contact numbers were needed to be able to track

participants over time.

PRACTICAL INSIGHTS:

RESEARCH NOTES
20

ASTHMA MANAGEMENT IN MINORITY CHILDREN

KEY LESSONS LEARNED

Participant Recruitment/Retention

■ Recruitment can be conducted through a wide variety of sites; each has advantages and

limitations.

■ Screening questionnaires are effective recruitment tools.

■ Participant recruitment and retention are facilitated by incentives, including convenience and

comfort factors.

■ The informed consent process and followup efforts can be challenging and time consuming.

■ Understanding an organization’s structure is important for accessing participants through the

organization.

Questionnaires and Assessment Measures

■ Language, literacy, culture, and conceptual relevance should be considered when developing

questionnaires.

■ Morbidity data are a more useful basis for recruitment than severity measures.

■ Outcome measures should assess not only morbidity but also quality of life, social support, and

family functioning.

■ Medication use and technique should be evaluated.

■ Other sources of data may not correlate with study data.

Intervention Design, Delivery, and Evaluation

■ A steering committee can be useful for improving study design and execution.

■ Maintaining a pure control group in a community intervention may not be possible.

■ Assessing staff attitudes and receptivity in advance allows for a more appropriately tailored

intervention.

■ Evaluation of asthma management programs should be multidimensional.

■ Power analyses should take into consideration the likelihood of missing data.

PATIENT/PARTICIPANT IDENTIFICATION AND

RECRUITMENT

A variety of sites can be used for identifying

and recruiting participants. (See table 1.)

Screening questionnaires can be an effective

tool for identification and recruitment of

participants.

The New York investigators developed a screening questionnaire that was used at the Bureau of

Child Health clinics to identify children with

asthma (see appendix III). The reception clerks

or other workers at the clinics were taught to

hand out the questionnaire at specific age intervals for children who came in for routine visits.

The children’s parents would complete the
21

PRACTICAL INSIGHTS: RESEARCH NOTES

Table 1

RECRUITMENT SITES

Recruitment Site Limitations

Schools ■ May impose constraints

upon researchers; flexibility

is required

Rationale

■ Concentrated source of potential

participants

■ Broad-based sample of children

■ “Captive audience” for direct

intervention

■ Generally receptive to asthma

education interventions

Hospital-Affiliated Clinics

and Inpatient Facilities

■ Useful for reaching minority patients

■ Participants can be identified

through easily accessible patient

registries

■ Diagnosis and study

eligibility must be verified

■ Patient contact lists may not

be accurate

Community Physicians ■ Potentially important source of

patient referrals

■ Physicians are not always

willing to participate in

interventions1

Emergency Departments ■ Contacting and recruiting

patients with social and

economic problems may be

challenging2

■ Useful for identifying and reaching

patients with poorly controlled

asthma, minority patients, lowincome patients, and those without

a primary source of care

State Agencies ■ May impose some constraints

upon researchers3

■ Useful resource for identifying study

participants

Public Health Clinics ■ Source of patients with undiagnosed

asthma and patients without a

regular source of primary care

■ Interventions can bring about broad

changes in medical practices

■ Budgetary constraints and

local bureaucratic changes

have the potential to create

roadblocks for researchers

1 Community physicians initially resisted participating in the New Mexico program because they did not completely

understand the program and feared losing patients to it. This slowed recruitment considerably. Concerns about time and

space limitations, confidentiality issues, and possible chart audits are other potential sources of physicians’ reluctance to refer

patients for research.

2 Researchers in the St. Louis project were able to contact 74 percent of patients with asthma identified from a list of children

admitted to St. Louis Children’s Hospital Emergency Department. The children’s parents or guardians were contacted by

telephone and/or letter with followup by telephone to determine their interest in participating in the study. Several callbacks

per family were required to recruit each patient. Changes in phone numbers and incorrect phone numbers also reduced the

contact rate. However, once contacted, of those eligible, 93 percent agreed to participate in the intervention. Of the first 103

children identified and recruited for the St. Louis study, 77 had had no regular asthma care in the previous year.

3 The New Mexico project had patients identified by Children’s Medical Services, a State agency for children with chronic

medical conditions. This proved a viable method of identifying patients, but budgetary considerations limited uniform and

timely enrollment in some areas of the State. In addition, the methodology of the study was influenced to some degree by the

involvement with Children’s Medical Services.
22

ASTHMA MANAGEMENT IN MINORITY CHILDREN

questionnaire, which would provide the physician

with some history and enough information to

initiate an inquiry about asthma symptoms. All

clinic personnel also received basic training about

asthma. They were encouraged to feel free to

give a screening form at any time if they suspected a child might have asthma and to communicate their observations to the physician either

verbally or by writing observed symptoms on the

screening form. A copy of each screening form

was set aside and collected every 4 to 6 weeks,

tallied, and a report of findings sent to the

regional supervisors of the clinics. Regional

supervisors could use these data to monitor

participation in the asthma program.

Based on information from the screening form

and subsequent questions to the family, physicians who suspected that a child might have

asthma then would invite the family to enter the

asthma program at the clinic in which the child

ordinarily received care. The proportion of

patients with asthma seen in the targeted BCH

clinics nearly tripled by the second followup year

as a result of the questionnaire.

Face-to-face contact can be an important

aspect of recruitment.

The Texas investigators felt that a face-to-face,

one-on-one approach with bilingual staff members who understood Hispanic culture was a

crucial component for successful recruitment of

Hispanic participants.

Obtaining consent from potential participants

can be time consuming and challenging. The

use of material incentives may improve the

efficiency of recruitment.

In the Washington, D.C./Baltimore project,

project descriptions and consent forms were

mailed to parents of children identified as potential participants. In many cases, multiple mailings and followup telephone calls were needed

Incentives can facilitate participant recruitment.

before the consent forms were returned. A

tremendous amount of time was invested in

obtaining consent forms.

In St. Louis, evaluation interviews were by

telephone, but signatures were required for

medical chart release forms, and Social Security

numbers were required for payment after completion of interviews. These items were on a single

form, and most people returned release forms

quickly since payment was contingent upon

returning them.

Incentives that were used with success in the five

projects included:

• Monetary reimbursements (for example, $15

for baseline and final interviews and $10 for

quarterly followup interviews)

• Bus tokens, cab vouchers, travel money

• Toys, photographs (taken at first visit and

given at followup visit), tote bags, T-shirts,

refrigerator magnets, key chains, bumper

stickers, asthma watches

• Strategies to make the educational experience

fun (such as calling a program a “club”)

• Free meals

• Educational materials, training, free medical

care and medication, peak flow meters,

mattress covers
23

PATIENT/PARTICIPANT RETENTION

Factors that can help maintain patients’

participation include an honest, sensitive, and

understanding personal relationship with

staff; convenience; incentives; and pleasant

and rewarding experiences at the followup

visits. In addition, obtaining several contact

names and telephone numbers at enrollment

increases the likelihood of finding participants

who do not come to appointments. The use

of a professional survey research firm also can

be effective in following up with participants.

The Texas investigators found that it was important to personalize interactions with patients’

families by learning the names of family members

and showing genuine concern for them, often

merely by inquiring about them. Staff members

took the time to

chat with families,

even if they did not

have an appointment, and made

positive comments

about the child and

the family whenever possible. It

was important to

constantly encourage families and to

be patient with

them. Bilingual

staff members who

were competent in

dealing with Hispanic families also enhanced

communication and facilitated retention efforts in

the Texas project.

The St. Louis staff also strove to establish rapport

with patients by being knowledgeable about

asthma and pediatrics, having an understanding

of urban living and its effects on children and

their parents or guardians, using simple and

appropriate levels of communication, and working hard to be perceived as honest and trustworIt is crucial to understand the hierarchy of a

given organization and to know which key

players, at all organizational levels, control and

facilitate access to study participants and

records.

With some organizations, permission to access

participants must be granted by individuals in

high administrative positions (a so-called “topdown” approach). With others, people with lesser

positions may be instrumental in accessing participants (“bottom-up”). For example, school nurses

and/or chapter I workers (in schools receiving

Federal funding) can be avenues for identifying

children with asthma. Secretaries in schools and

parent liaisons are also potential sources.

In order to obtain school records of student

attendance, Texas investigators had to contact and

negotiate with 12 different independent school

districts, as well as several private schools. Each

district had specific requirements for approval of

research studies and for the manner in which data

could be requested and obtained. In general,

schools were very receptive to efforts to improve

the life of children with asthma but were concerned that the research study would require

additional effort and time to be expended by their

staff members. Only one private school refused to

provide attendance data after consent had been

obtained from the subject’s parents.

The Washington, D.C./Baltimore project invested

over 9 months in contacting officials in the school

system. Superintendents, research reviewers,

health professionals, and principals of schools were

among those contacted for permission to conduct

the research.

In New York, the leadership at the department of

health was aware that many children with asthma

within the families being followed by their clinics

were going to emergency departments for crisis

care rather than receiving preventive care at the

clinics. Because the BCH clinics were centrally

administered, the leadership could and did facilitate patient recruitment into the program.

Factors that can help

maintain patients’

participation include an

honest, sensitive, and

understanding personal

relationship with staff;

convenience; incentives;

and pleasant and

rewarding experiences at

the followup visits.

PRACTICAL INSIGHTS: RESEARCH NOTES
24

ASTHMA MANAGEMENT IN MINORITY CHILDREN

patients interviewed during the baseline year.

New Mexico researchers also found disconnected

telephones and returned mail a frequent and

time-consuming problem. Children’s Medical

Services caseworkers were helpful in tracking

patients.

The St. Louis investigators contacted those whose

telephones had been disconnected by sending

postcards requesting that participants call for

their quarterly interview. The frequency of the

interviews helped the researchers maintain

current addresses and telephone numbers.

Periodic checking of hospital records also provided updated information for some participants.

The Washington, D.C./Baltimore investigators

used a professional survey firm to conduct

telephone interviews. Although the initial

expense was high (between $50 and $70 per

followup), the strategy was cost-effective in the

long term. Four hundred participants could be

interviewed within 3 to 4 weeks, with an 84 percent completion rate. In addition, the quality

and completeness of the survey were ensured

through internal quality control checks at the

survey firm.

Participants who could not be reached by telephone in the Washington, D.C./ Baltimore

project were sent a note with a toll-free telephone

number and the promise of $20 for calling in for

followup.

STAFFING

(See public health notes section for a full discussion of staffing.)

QUESTIONNAIRES AND ASSESSMENT

MEASURES

Issues related to language, literacy, culture,

and conceptual relevance should be

considered when developing and selecting

questionnaires and other assessments.

Honest, sensitive communication with patients can help

retain them in a study.

thy. Both the interviewers and educational staff

emphasized the confidentiality of information and

that they were not “checking up on” or interested

in “reporting” parents. Also, a $10 incentive was

offered for each quarterly interview. Many

participants looked forward to the quarterly

interviews (the response rate was 85 percent) and

even contacted staff members between interviews

for information or to report developments in their

children’s asthma.

The New Mexico investigators initially tried to

conduct their research program exclusively

through a clinic in Albuquerque. The rurally

located patients found travelling to Albuquerque

for followup visits to be the most difficult part of

the program. Once outreach clinics were established around the State in the families’ own

communities, virtually 100 percent of patients

kept their scheduled appointments. The researchers tried to provide a comfortable setting

with snacks and beverages. Although the

families appreciated this gesture, it was difficult

to implement on a continual basis because of

space and setting limitations.

Changing telephone numbers and interruptions

in telephone service for low-income participants

can lead to challenges in followup. This situation

resulted in the New York investigators’ obtaining

followup interviews for only 50 percent of

PHOTOGRAPH NOT AVAILABLE
25

Not only word choice but phrasing and format

can affect the ability of a participant to understand a questionnaire and its relevance. In the

Washington, D.C./Baltimore project, for example, respondents were confused by questions

regarding the likelihood that a particular situation would occur (e.g., 100 percent likely, 50 percent likely). Avoiding jargon was essential. For

example, the phrase “at home” was used instead

of “at your home” and the “room where you

sleep” instead of “your bedroom.” In the New

Mexico project, participants did not understand

the relevance of a Parenting Stress Index Questionnaire and consequently were reluctant to

complete it.

Outcome measures for asthma interventions

should include, in addition to the usual

measures, assessments of quality of life, social

support, and family functioning.

Measures of social support in the community

were shown to be important predictors of health

care utilization in some of the projects. In St.

Louis, for example, parents were asked to estimate the number of family members and friends

they “feel at ease with and can talk to about

personal matters” and “can call on when you need

a favor.” Those who indicated relatively few

confidants—that is, those who were quite socially

isolated—reported that their children had more

frequent asthma symptoms and emergency visits.

In the Texas study, several standardized questionnaires as well as specific questions developed by

the investigators were used to assess a broad

range of outcomes related to quality of life,

morbidity, and the impact of the illness on the

child’s family.

(Detailed information about asthma outcome

measures is available in the National Heart,

Lung, and Blood Institute asthma outcome

measures workshop report [National Heart,

Lung, and Blood Institute, 1994].)

It is important to collect information about

patterns of actual medication use and to assess

self-medication technique.

Recording prescribed drug regimens is not

sufficient to gauge medication use. Assessments

of how participants in the Washington, D.C./

Baltimore project recorded medication use

indicated that bronchodilators prescribed to be

used as needed were, in some cases, being taken

daily, whereas anti-inflammatories, which had no

immediate benefit, were not necessarily taken

daily as they should have been.

It may be helpful to avoid using the term

“asthma” when recruiting patients.

Parents who are not aware, or do not believe, that

their children have asthma may not see a need for

intervention and may, therefore, keep their

children out of a potentially beneficial study.

Others may be

frightened by the

term. Broad

eligibility definitions, such as

recurrent cough or

wheezing, restricted activity, or

awakening at

night, can maximize recruitment of eligible participants. In New

York, the use of the screening questionnaire was

helpful to the clinicians in determining which

patients needed followup appointments to discuss

the problems of asthma more fully with parents

or caregivers.

There may be a poor correlation between

morbidity data collected through the study

and data from other sources. In some cases, it

may be difficult to determine which data are

correct.

It is important to collect

information about patterns

of actual medication use

and to assess selfmedication technique.

PRACTICAL INSIGHTS: RESEARCH NOTES
26

ASTHMA MANAGEMENT IN MINORITY CHILDREN

In the Washington, D.C./Baltimore, St. Louis,

and Texas projects, parental reports of emergency

department use were higher than those indicated

in hospital records. Whether this disparity was

because of poor parental recall or inaccurate

hospital records could not be determined. In St.

Louis, concurrence of parental recall and medical

charts for outpatient physician visits was particularly low.

Obtaining data from school on days absent

due to asthma is challenging.

The investigators’ attempts to obtain this information were unsuccessful. Many schools were

able to provide data on the total number of days

absent, but not a total breakdown by the reason

for the absence.

Objective measures of lung function should be

used only after weighing the potential costs,

including burden to patients, against the

potential benefits of the assessment. The age

of the patients and their ability to perform

tests of lung function also are important

factors to consider.

Basing patient recruitment on morbidity data

(frequency of symptoms, intensity of

symptoms, and frequency of urgent care visits

and hospitalizations) may be a preferable

alternative to severity measures, which are

more difficult to define.

When translating assessment instruments

from English to other languages, reliability

and validity must be documented again in the

research population.

DESIGN AND ASSESSMENT OF

INTERVENTION DELIVERY

Quality control and monitoring of program

implementation according to standards are

important and can be conducted in a variety

of ways.

In the Washington, D.C./Baltimore project,

observers were used to monitor the quality of

instructors. The researchers also found it helpful

to obtain feedback directly after an educational

session with children to ensure that incorrect

information was not being taught.

The New York project developed a training

manual to help standardize the delivery of the

program by both the investigators and the BCH

staff members who were trained to deliver the

program in the second phase of the study. The

strategy resulted in a stronger, more consistent

intervention. The program delivery team members monitored each other’s performance during

each session, enabling the team to make corrections as needed during the session to respond to

particular needs and to stick to the overall plan.

In the St. Louis program, staff members observed

neighborhood residents implementing curricula.

Frequent in-service training and review of

program progress and problems served to encourage instruction according to standards.

A steering committee can be useful in

improving study design and execution.

The New York investigators created a steering

committee that included the investigators from

Columbia University, the Bureau of Child Health,

and the Medical and Health Research Association

of New York, Inc., as well as a supervisor from

each of BCH’s five regional divisions. Periodic

(e.g., monthly) meetings of representatives from

all parts of the program were useful to recognize

problems early and to work out solutions quickly.

A nurse-educator made monthly visits to each

clinic to talk with the staff, reinforce program
27

messages, and troubleshoot. She brought her

findings to the steering committee, which became

the principal decisionmaking body for the study.

Decisions were made as to how the BCH supervisors could more effectively reinforce the intervention in the field based on the information brought

to the committee by the nurse-educator, the

BCH supervisors, or administrators and on

information from database management reports.

In St. Louis, a “nuts ‘n bolts” committee of

researchers and community staff members,

including field workers and supervisors, met

twice a month to discuss program objectives,

evaluation of outcomes, and any items that would

enhance the research study and community

programs. The emphasis of these meetings was

generally on programmatic rather than research

issues, but they served as a good conduit to

ensure that field staff members were informed of

and understood research needs, to ensure that

field staff members’ observations were included in

discussion of research issues and that research

decisions were not made without staff involvement, and to coordinate field-based research

activities (e.g., surveys of schools in study neighborhoods). These meetings engendered a sense of

complementarity between research and practice.

Field staff members understood and cooperated

with research needs because they were able to

contribute to research development.

To establish a sense of community ownership

in a project and increase its effectiveness, a

nontraditional intervention strategy may be

necessary. For example, it may not be possible

to maintain a pure control group.

In the St. Louis study, neighborhoods were

assigned to control and intervention groups.

All residents of intervention neighborhoods were

eligible for the program; residents of control

neighborhoods were not. Nevertheless, some

contamination between intervention and control

groups occurred. Mass media reached all neighborhoods. Many participants moved from one

neighborhood to another. Also, almost all

physicians who cared for study subjects also cared

for controls, making the increased awareness of

asthma and the importance of regular care

available for both groups of children. In addition, offices of all physicians were visited at

regular intervals for review of charts of study

subjects and controls, increasing awareness of

asthma among the office staffs.

These contaminations could reduce differences

found between residents of study and control

neighborhoods. Through quarterly interviews

with caregivers, however, researchers were

generally able to

track cases,

identify those who

moved from a

study to control

neighborhood, and

adjust analyses

accordingly.

When communities are reluctant

to use control groups because no one wants to be

left out, staging the intervention so that some

groups get the intervention before others is one

strategy for getting agreement on the use of

control groups. In this case, there is the added

benefit of having results for the control groups

before and after they receive the intervention.

The New York project did this, enabling all 40

clinics in BCH to receive training without

compromising the original study design.

When evaluating asthma in minorities and the

effectiveness of interventions, it may be

helpful to consider the following areas:

Process Measures

• Is the prevalence rate in the treatment site less

than the actual or expected community

prevalence rate? If so, screening should be

conducted to identify new cases.

To establish a sense of

community ownership in a

project and increase its

effectiveness, a

nontraditional intervention

strategy may be necessary.

PRACTICAL INSIGHTS: RESEARCH NOTES
28

ASTHMA MANAGEMENT IN MINORITY CHILDREN

• Do the families receive continuing, preventive

care? Do they make scheduled visits for

preventive asthma care as well as sick visits?

Do they have the skills and resources needed

to carry out the therapeutic plan? Do families

perceive the physician as a partner?

• Have physicians prescribed appropriate

therapy? Are patients with moderate or

frequent symptoms receiving daily antiinflammatory therapy? Are the patients or

families given a written management plan that

allows them to make some adjustments on

their own according to changing circumstances, such as onset of a cold?

• Have families been educated about asthma?

Do they accept the diagnosis, and are they

able to carry out the management plan?

• Have members of the community learned that

asthma is serious? That those with asthma can

lead full and active lives? That when symptoms occur, they should be dealt with? And

that when symptoms persist, help should be

sought?

Final Outcome

• Is asthma well controlled in children and are

they fully active? Are they missing fewer days

from school? Are days with limited activity or

nights with sleep disturbance infrequent? Are

emergency visits and hospitalizations rare?

Has the impact of the illness on family life

been minimized?

Evaluations of asthma management programs

should be multidimensional.

Several characteristics of asthma suggest the use

of multiple indicators to evaluate asthma management programs. First, there is no “gold

standard” measure of asthma management.

Symptoms, lung function, avoidance of unnecessary acute or emergency care, and general quality

of life are all pertinent. Second, individual

measures may be ambiguous. Frequent symptoms may represent asthma that is difficult to

control or failure to follow regimens that would

be adequate to control mild asthma. Reports of

symptoms are also subject to a number of reporting biases (such as seeking to report socially

appropriate patterns or seeking to please the

interviewer). Although increases in reports of

symptoms may represent increased morbidity,

such increases among those who have previously

ignored symptoms may reflect increased sensitivity to symptoms as a beneficial result of asthma

education.

The significance of ED visits may also be ambiguous. Although they may represent acute symptoms requiring urgent or emergency care, some

low-income patients may use the emergency

department as a source of primary care because of

barriers to regular outpatient care. On the other

hand, waiting too long to seek emergency care

has also been implicated in asthma deaths. The

St. Louis researchers reviewed records of emergency visits to confirm the diagnosis of asthma

and to note the treatment used for the asthma.

Use of nebulized bronchodilators during the visit

and prescription of prednisone at discharge were

taken to indicate acute asthma, as opposed to use

of the emergency department as a source of

regular care or to refill prescriptions or other

nonemergent treatment.

All of these factors suggest that a number of

measures should be used as outcomes for asthma

management research. The use of a number of

measures represents, in turn, the multidimensional nature of asthma.
29

DATA ANALYSIS AND MISSING DATA

Power analyses should take into consideration

the likelihood of missing data, particularly

when evaluating an intervention with multiple

followup time points.

In New Mexico, the rural nature of the State and

distances that patients had to travel for followup

care caused otherwise compliant patients to miss

one or more followup visits in Albuquerque. This

situation resulted in the belief that it is a good

idea for power to be conservative and therefore to

overestimate the sample size needed to detect a

desired effect. In addition, data analysis methods

should include these cases that are missing

information for one or more time points (for

example, random effects modelling). “Completecase only” analyses can misrepresent intervention

effect sizes.

Power calculations for the Texas group were

based on a potential dropout rate of 25 percent.

This is close to the dropout rate observed by

other investigators in longitudinal studies of

patient interventions.

In the New York project, the researchers estimated 20 percent loss to followup in the year

following the program (for family interviews), but

the actual rate was 50 percent, which reduced the

ability to detect differences between the program

and control group parents.

References

National Heart, Lung, and Blood Institute.

Supplement: Asthma outcome measures: workshop on asthma outcome measures for research

studies. Am J Respir Crit Care Med 149(2 Pt 2):S1-

S90, 1994.

PRACTICAL INSIGHTS: RESEARCH NOTES
30

ASTHMA MANAGEMENT IN MINORITY CHILDREN
31

Public health activities were identified as those

attempting to improve the management of

asthma in groups of people in communities and

schools. This section offers suggestions for

planning and implementing asthma interventions

from a public health perspective.

PRACTICAL INSIGHTS:

PUBLIC HEALTH NOTES

KEY LESSONS LEARNED

Planning an Intervention

■ Interventions can be strengthened through partnerships between public and private

organizations.

■ A “lead agency” approach can be an effective option for program governance of a communitybased intervention.

■ Public health planners should understand how patients interact with the medical systems in the

targeted area.

■ Intended audiences should be involved in the development of educational programs.

■ Factors that affect health care providers’ willingness to adopt new practices should be

recognized and addressed.

Implementing an Intervention

■ Interventions should address participants’ attitudes, beliefs, behaviors, skills, and knowledge.

■ Consideration should be given to cultural factors, reading level, language barriers, format of

materials, and convenience to participants.

■ A diversity of groups should be targeted through a broad range of activities.

■ Simple messages can aid public education efforts.

■ A neighborhood asthma camp is a useful strategy for educating urban families.

■ Group asthma education is a challenge in rural areas.

■ Lay personnel can be used as asthma educators.

■ Compensation is an important factor in staff recruitment and retention.
32

ASTHMA MANAGEMENT IN MINORITY CHILDREN

PLANNING PHASE

Viable partnerships can be established

between public and private organizations.

Developing partnerships was an important

component in three of the asthma intervention

projects. In each case, the partnerships brought

together resources that are essential in managing

and controlling asthma.

In New York, the department of health, which

operated more than 40 primary care clinics for

young children, formed an alliance with a medical

school that had expertise in clinical care and

health education to create a model that provided

continuing state-of-the-art primary care to

children with asthma.

In New Mexico, the State-funded Children’s

Medical Services (which provides care for children

with serious health problems) combined its

services with expertise from a university-based

medical center to improve clinical care and health

education for underserved rural minorities.

In St. Louis, a private, not-for-profit community

organization formed an alliance with a university

medical center that has clinical services to

respond to needs identified in the community. In

Washington, D.C., and Baltimore, a partnership

with the school systems was created. School

systems tend to be very concerned with the

health of their children (as well as test scores and

absenteeism) and are usually willing to enter into

a partnership with a reputable university or

research institution providing the schools gain

something from this partnership.

A “lead agency” approach to program governance is effective in engaging neighborhood

residents to plan and implement asthma

education and management programs.

The St. Louis project used a local, experienced

settlement house and social service and health

agency (Grace Hill Neighborhood Services) to

organize the planning and direction of its program. Neighborhood Wellness Councils, composed of neighborhood residents and Grace Hill

clientele, were organized in several neighborhoods to conduct program planning, recruit

neighborhood residents to staff positions within

the program, and recruit children and caregivers

into the program. The lead agency approach

takes advantage of the agency’s existing links to

the community and program credibility. However, working with a lead agency also may bring

with it the agency’s limitations. For instance, if

the agency has not already established links to

important groups, the new program may have

trouble reaching those groups.

Interventions should be based on an understanding of the medical systems involved and

how children and their families interact with

the systems.

In St. Louis, it was found that most families

received only episodic, acute care and had received little information about treating asthma as

a chronic illness. The program staff needed to

help families identify appropriate sources of care

in addition to addressing other problems in

asthma management.

The New York program addressed the problem of

overreliance on crisis care by emphasizing that

regular preventive care at BCH could reduce

families’ need for emergency care. Families were

provided with an asthma information card (see

appendix III) that could be shown to health care

providers (e.g., hospital emergency department

staff, clinic staff, or private physicians) if the

children needed to be seen when the child health

clinics were closed. The card includes information about the child’s medications and the name

of the primary care physician and indicates that

the child was enrolled in a program for preventive

asthma care under the guidelines established by

the NHLBI.
33

Intended audiences should be involved in the

development of educational programs.

Focus groups consisting of children with asthma

and their parents were used in the Texas intervention to obtain feedback on educational videotapes

as they were developed. Flip-chart materials also

were pilot-tested with families. The focus groups

and pilot-testing identified several minor problems, including specific words that were not

easily understood and additional content areas

that families felt were important.

In St. Louis, a number of standard asthma

education programs were adopted and implemented through a community organization

approach that involved tailoring and revision of

programs by the intended audience. Although

some control over program content was necessarily lost as a result of this tailoring, the researchers

felt that the time and resources necessary to

revalidate the program curricula in each new

modification would probably reduce the enthusiasm of the community for the program.

The Washington, D.C./Baltimore researchers

developed and named a six-session curriculum for

children based on their input. The program was

called the A+ Asthma Club because elementary

school children prefer the idea of a club rather

than a class. Creating a club atmosphere for

children in small groups gave each child time to

talk and participate.

IMPLEMENTATION PHASE

Educational Content and Format

Interventions should address attitudes,

beliefs, behaviors, and skills of the intended

group, not just knowledge. In developing

materials, consideration should be given to

ethnic and cultural appropriateness, reading

level, and language barriers.

The St. Louis group has followed a series of steps

to promote quality control in adapting established educational curricula to the low-income,

African American neighborhood setting. (1) No

curricula are considered for adoption unless they

have been validated in other studies. (2) Prior to

developing education materials, audience input is

secured, either through ongoing consideration of

program progress and emerging needs among

wellness councils and staff or through explicit

focus groups of children, caregivers, and other

neighborhood residents. (3) Focus group findings

or staff and

volunteer discussions are then

reviewed by staff

and wellness

councils. This

leads to a decision

to proceed with

curricula development and identification of available materials. (4)

Agency and university staff and wellness council

members then work to develop the curriculum

piece, following established educational procedures of identification of key curricula concepts,

attention to reading level and ease of comprehension (limited number of themes, simple vocabulary, short sentence length, commonly understood

symbols, emphasis on illustrations, easy to

comprehend headings and format, short line

width, adequate type size [Doak et al., 1985;

Kirsch and Jungblut, 1986; Kozol, 1985;

Redman, 1984]), and consideration of audience

knowledge and attitudes. (5) If the curriculum

piece is planned for continued or widespread use,

pilot tests are conducted with the intended

audience in the setting in which they will be

used. Even if not explicitly pilot-tested, materials

are re-reviewed by wellness councils and other

staff and volunteers before final production.

The Washington, D.C./Baltimore researchers

emphasized that written material should be

supplemented with personal instruction or

audiovisual aids. New material should be related

to old. Selecting readable print size, using bold

PRACTICAL INSIGHTS: PUBLIC HEALTH NOTES

Intended audiences should

be involved in the

development of

educational programs.
34

ASTHMA MANAGEMENT IN MINORITY CHILDREN

face type, and using pictures are important.

Concepts should be illustrated.

In the Texas project, a bilingual Hispanic nurse

educator worked one-on-one with a child with

asthma and his or her parents, conducting each

educational module in either Spanish or English

depending on parent and child preferences. The

one-on-one format was employed to increase

discussion and to allow the nurse educator to

individualize the module to each family’s circumstances. Educational materials were printed in

Spanish and English at a fourth grade comprehension level. Each lesson was reinforced by

colorfully illustrated flip cards in English and

Spanish that visually depicted essential points.

Children and adults portrayed on the flip cards

were Hispanic in appearance to enhance identification value. At the conclusion of each module,

families received a take-home pamphlet in

English and Spanish outlining key messages.

Each point of information on the pamphlet was

reinforced with an illustration to reduce reliance

on reading comprehension.

Peer modeling in the Texas project was provided

by eight videotapes featuring four Hispanic

children with severe asthma (two boys and two

girls), ages 6 to 12. These children were shown

managing their asthma at home, at play, and at

school; discussing in their own words why these

behaviors have been helpful; and sharing their

feelings about asthma’s impact on their life and

schoolwork. The role model videotapes were

produced in a documentary format to enhance

realism. The conventional technique of staging

scripted scenes using actors to portray children

and parents often produces stilted dialogue and

contrived situations that are unappealing to

children accustomed to sophisticated video

production techniques. The on-camera narrator

for the videotapes was a bilingual Hispanic

female the same age as most of the mothers in

the educational program. The videotapes featured the narrator speaking in Spanish and

Language barriers and cultural appropriateness should

be considered in curricula development.

presented interviews with Spanish-speaking

parents or, occasionally, an English-speaking

parent with a Spanish translation dubbed-over by

the narrator. The language in the English

videotapes was handled in a similar manner. All

four role model children spoke in English on the

videotapes since all children in the Texas project

preferred English for peer conversation. Interactions between children and parents on the

videotapes were presented in Spanish or English

depending on the families’ language preferences.

New Mexico selected the Open Airways curriculum since it was developed for Hispanic patients.

It was condensed into four sessions and updated

to include peak flow monitoring and new medications. The researchers found that families and

health care providers preferred having one

booklet that accurately covered important

asthma information, as opposed to using a variety

of materials. Step-by-step asthma action plans

for dealing with increased symptoms and low

peak flow also were extremely helpful to both

families and providers.

The New York intervention with BCH clinic staff

used interactive teaching methods that explicitly

sought to identify the beliefs, behaviors, and

organizational concerns of the clinic teams and

involved them in activities to resolve them. For

example, using a strategy developed by Kurt
35

Lewin called “force field analysis,” clinic teams

were asked to develop a strategy for dealing with

a perceived problem and to begin implementing

it the next day in their clinic. A discussion of the

theories of health behavior with the clinic teams

was very helpful to the staff in addressing family

understanding of asthma and how to work with

these families to control asthma.

Simple messages about asthma can aid public

education efforts.

The St. Louis public education program was

based on three basic messages to encourage and

assist children with asthma and their parents to

receive appropriate asthma care: Take asthma

seriously; take asthma medicine for asthma

symptoms; and when symptoms persist or

worsen, get help. These messages were based on

studies of asthma deaths that implicated misunderstanding of basic aspects of asthma care and

neglect of asthma medicines. Thus, relatively

simple messages can make a big difference.

Simple messages are easily understood, and

nonprofessional staff members without extensive

training can promote them effectively. They can

also be covered in simple promotions that do not

require extensive time or attention from audiences.

Information about local resources should be

incorporated into community education

programs.

Through the course of various educational

activities in the St. Louis program, it became

apparent that caregivers were frustrated over how

to tap community resources to get the care they

needed for their children’s asthma. They were

impatient with general asthma education that did

not address these specific problems. This resulted

in emphasis on exchange of information among

participants and question-and-answer sessions,

often using an “Ask the Doc” format.

Educational interventions to improve asthma

care in children should target the children and

their families, health care providers, teachers,

day care providers, peer groups, and other

community members. In this way, patients

can receive consistent messages from all with

whom they come into contact.

Modalities of Implementation

Asthma education that is incorporated into a

range of activities is more attractive than

formal classes.

The St. Louis researchers found very little interest

on the part of parents and their children in

asthma education classes and similar formal

programs for asthma education. Consequently,

greater emphasis was placed on integrating

asthma-related messages into other educational

programs (e.g., general wellness courses taught

through a neighborhood college maintained by

Grace Hill), neighborhood activities, and mass

media. Samples of educational activities include

“Asthma Skate-Outs” sponsored by local merchants, asthma

awareness prayer

programs in

neighborhood

churches, in-service

training for neighborhood school

staff, health fairs,

proclamation of

March as Asthma Month by the mayor of St.

Louis, and media coverage through newspapers

and electronic media, including call-in radio

shows with Neighborhood Asthma Coalition

representatives answering callers’ questions.

The concept of the “teachable moment” was used

by the St. Louis project to integrate asthma

education into a range of attractive activities.

This approach is borrowed from classroom

PRACTICAL INSIGHTS: PUBLIC HEALTH NOTES

Information about local

resources should be

incorporated into

community education

programs.
36

ASTHMA MANAGEMENT IN MINORITY CHILDREN

teaching strategies based on Robert Gagné’s book

The Conditions of Learning (Gagné, 1977). The

teachable moment approach pulls individual

concepts from standard curricula to stand alone

during the course of

asthma-related

activities. It requires that adults

who teach and

supervise students

have a repertoire of

asthma information

and a good sense of

how individual facts can be integrated into the

context of an activity at hand. With the teachable moment approach, issues that arise during

the course of a variety of program activities can

be used as a platform for asthma management

lessons.

In scheduling educational interventions,

convenience is a significant factor for patients

and their families.

The Texas researchers originally tried to schedule

all of the patient education sessions immediately

before or after a scheduled physician visit.

However, some families preferred to come at

another time. Teaching sessions also had to be

scheduled around school and work schedules. In

New Mexico, because of long distances to travel,

families preferred having classes linked to a clinic

visit. Stand-alone classes would not have worked.

Some of New York’s clinics had clinical sessions

where a majority of the scheduled patients had

asthma; this made holding group asthma education sessions convenient for families and staff.

(See clinical notes section, page 15.) A variety of

modalities (e.g., telephone calls, camps, group

education classes, home visits) may be useful for

followup and reinforcing asthma education.

In St. Louis, providing transportation to program

activities greatly increased attendance. This may

be important in settings where participants do

not have their own means of transportation,

where public transportation is not adequate, and

in high crime areas.

A toll-free telephone number is a valuable

resource for asthma education in rural areas.

A toll-free telephone number set up for easy

information access by the New Mexico project

was well used not only by families but also by

other health care providers, pharmacists, and case

managers.

A neighborhood asthma summer camp can be

a useful approach to addressing not only

asthma but also the social and health needs of

an urban community.

The St. Louis researchers found a neighborhood

asthma summer camp to be a valuable means of

getting the community involved in asthma

education activities. Holding the camp within

urban neighborhoods, rather than in rural areas,

allows asthma education to reach friends and

family members who otherwise could not participate. The camp curriculum includes interactive

discussions and games to increase asthma knowledge; development of problem-solving and

communication skills; crafts such as T-shirt

painting and full-body drawings, aimed at

enhancing self-esteem; physical activities such as

kickball, exercises, breathing techniques, singing,

and dancing, aimed at giving children with

asthma confidence in their physical capabilities;

visits by a professional storyteller with stories

about African American heroes who overcame

hardships; and field trips to educational attractions in the St. Louis area. Older campers serve

as counselors to younger campers, which gives

the counselors an opportunity to learn while they

teach. The camp is held from midmorning until

midafternoon for 1 week in each of several

neighborhood sites. Transportation is provided

and has been judged essential to the camp’s

success.

In scheduling educational

interventions, convenience

is a significant factor for

patients and their families.
37

Originally, there was concern that telephone calls

and meeting at neighborhood activities would be

insufficiently intense, relative to home visits.

However, both neighborhood staff members and

program participants indicated many concerns

about home visits in light of general concern

about neighborhood crime. Also, the telephone

calls and meetings at community events appear

to have supported effective and helpful relationships between staff and participants. Home visits

are now conducted occasionally but not on a

regular basis.

Recruiting, Training, and Retaining Staff and

Volunteers

Lay personnel can be involved in the

development and implementation of asthma

education programs.

Family educators (parents of children with

asthma) in the New Mexico program were

identified by health professionals in the Pediatric

Pulmonary Division and then interviewed by

telephone to determine interest and qualifications

(see appendix III). The educators were trained to

reinforce asthma education and provide support

to families. Some went on to contribute their

skills to the community at large by being involved in asthma camp and teaching the Open

Airways for Schools curriculum. Several went to

school for nursing and respiratory therapy.

In St. Louis, neighborhood residents were recruited to provide individualized basic asthma

education, assistance, and social support to

children with asthma and their caregivers. The

program’s focus on simple messages increased the

likelihood of successfully training nonprofessionals to conduct asthma education. The workers

also provided general assistance in program

development and implementation.

Creating a detailed and easy-to-follow curriculum

with scripted sections for people to use as models

allowed people with no background in asthma to

In rural areas, many factors can affect the

ability of families to attend group asthma

education classes and present additional

problems for the project staff.

Families in the New Mexico project had to travel

to Albuquerque to attend group educational

sessions. During the same day, children received

clinical evaluation, but this often involved a very

long wait. Finding space for the classes, arranging babysitting for young children during the

classes, and bad weather contributed to the

researchers’ logistical problems. Families who

missed one of the sequentially designed classes

had to be rescheduled, which created further

difficulties.

Home visits are not always necessary to

reinforce asthma education.

The New Mexico investigators found that in

some cases one or two visits by the home family

educator, rather than six, would have been

sufficient. In other cases, families may benefit

from a different type of intervention (e.g., peer

counseling for teenagers).

There was extensive use of telephone calls and of

meetings at neighborhood events in St. Louis.

Lay personnel can be valuable to community asthma

education programs.

PRACTICAL INSIGHTS: PUBLIC HEALTH NOTES
38

ASTHMA MANAGEMENT IN MINORITY CHILDREN

learn quickly and present the Washington, D.C./

Baltimore program without assistance.

Selecting people who had asthma themselves or

who had a family member with asthma did not

always prove to be advantageous. Although

these individuals were generally familiar with

asthma and eager to help children with asthma,

special attention had to be given to be certain the

program messages

were delivered

without bias when

these messages

contradicted

educators’ personal

beliefs about

asthma management (e.g., believing it was acceptable to have

pets or believing in homeopathic or “alternative”

treatments for asthma).

Compensation is an important factor in

recruitment and retention of staff.

Initial plans to recruit volunteers for the St. Louis

program proved unworkable. The researchers

found that payment is necessary and appropriate

when regular execution of extensive responsibilities is desired. Thus, neighborhood residents

have been recruited as paid staff. Moreover,

increasing the salary for their positions reduced

an unacceptable turnover rate.

Part-time salaries may not be sufficient to retain

staff. Several health educators left the New

Mexico and Washington, D.C./Baltimore studies

because the work was not full time.

Strategies to maintain feelings of unity with

the community are useful in retaining

neighborhood residents as project staff.

The St. Louis program was plagued initially by a

high level of turnover among staff members

recruited from neighborhood residents. Factors

such as unclean home environments, gang

incidents, and illiteracy created anxieties among

the peer neighborhood workers as to their role in

the neighborhood. To maintain homogeneity

among the workers and intended residents, the

researchers revised training to include attention

to the role of the workers and reduced emphasis

on home visits. These changes helped increase

community staff retention, job performance, and

impact by enabling them to be more accepting

and work with a greater sense of unity with those

they seek to help.

Regular (if possible, biweekly) meetings with

project staff are important for troubleshooting

and maintaining staff skills, interest, and

cohesiveness.

Barriers to Implementation of Intervention

Social and economic barriers can inhibit

implementation of an intervention.

In New Mexico, money for medications, medical

care, and travel expenses posed a huge barrier.

Inability to maintain a vehicle for traveling long

distances was mentioned frequently as a barrier.

The New Mexico researchers also found that

some patients were hesitant to admit if they did

not understand instructions. This lack of communication posed another barrier to care.

Lack of pharmacies, especially 24-hour pharmacies, in the St. Louis program neighborhoods

posed another barrier to care. Participants’

hesitation to use medications daily for fear of

dependence and increased tolerance also inhibited

asthma management.

Interventions for health professionals require

tremendous time and effort.

(See clinical notes section for a full discussion of

education for health professionals.)

Compensation is an

important factor in

recruitment and retention

of staff.
39

References

Doak CC, Doak LG, Roos JH. Teaching Patients

With Low Literacy Skills. Philadelphia, PA: J.D.

Lippincott Company, 1985.

Gagné RM. The Conditions of Learning. 3rd ed.

New York: Holt, Rinehart, and Winston, 1977.

Kirsch I, Jungblut A. Literacy: Profiles of America’s

Young. No. PL02. Department of Education

Report #16, 1986.

Kozol J. Illiterate America. Garden City, NY:

Anchor Press/Doubleday, 1985.

Redman BK. The Process of Patient Education. 5th

ed. St. Louis, MO: C.V. Mosby Co., 1984.

PRACTICAL INSIGHTS: PUBLIC HEALTH NOTES
40

ASTHMA MANAGEMENT IN MINORITY CHILDREN
41

APPENDIX I:

ADDITIONAL MINORITY ASTHMA

INTERVENTION PROJECTS

National Heart, Lung, and Blood Institute

The National Heart, Lung, and Blood Institute is

currently funding three projects, each for 3 years,

under the title “Developing and Implementing at

the State and Local Level Educational Strategies

and Interventions for Controlling Asthma in

Inner-City and High-Risk Populations.” These

programs are briefly described below.

Abt Associates, Inc., and the Dimock

Community Health Center

Roxbury, Massachusetts

The goal of this project is to develop a long-term,

sustainable, communitywide coalition to reduce

asthma morbidity and mortality in the Boston

inner-city communities of Roxbury and

Dorchester. Abt Associates is developing and

evaluating the educational intervention in

collaboration with Dimock Community Health

Center, an experienced, community-based health

and human services agency. A number of other

health, administrative, social service, educational,

and media organizations in the community are

participating in the effort by identifying resources, planning and conducting aspects of the

program, and publicizing the campaign in the

community and within the participating organizations. This diversity of perspectives has produced a broad range of coordinated educational

activities targeted to adults and children with

asthma, their families, preschool teachers and

family outreach workers, and health care providers. Educational strategies were developed and

tested during the first year of the project and are

being implemented during the second. During

the third year, intervention, evaluation, and

documentation will be continued. Additional

information about this project is available from

David B. Connell, Ph.D., project director, or from

Sheila Moroney. Dr. Connell’s address is Abt

Associates, Inc., 55 Wheeler Street, Cambridge,

MA 02138; the telephone number is (617) 492-

7100. Ms. Moroney’s address is Dimock Community Health Center, 55 Dimock Street,

Roxbury, MA 02119; the telephone number is

(617) 442-8800.

Fresno Asthma Project

Fresno, California

The Fresno Asthma Project is a collaborative

effort among the San Joaquin Valley Health

Consortium (a consortium of 26 community

health services agencies and health professions

education institutions), Kaiser Permanente

Medical Care Program (a health maintenance

organization), the American Lung Association of

Central California, and the American Institutes

for Research (a behavioral and social science

research institute) to control asthma in the

county of Fresno, which has one of the highest

asthma mortality rates in the United States. The

intervention involves a patient/family education

component and a professional education component, each supplemented by a multimedia

campaign to raise public awareness about asthma
42

ASTHMA MANAGEMENT IN MINORITY CHILDREN

and increase understanding about the disease and

its treatment. Existing asthma education programs for patients are being adapted for the

ethnically diverse community in Fresno and used

for asthma education in a variety of settings.

Professional education is being conducted

through annual asthma conferences, periodic

grand rounds at key medical centers, and

inservice programs for school personnel. Additional information about this project is available

from Sandra R. Wilson, Ph.D., principal investigator. She can be reached at the American

Institutes for Research, P.O. Box 1113, 1791

Arastradero Road, Palo Alto, CA 94302; the

telephone number is (415) 493-3550.

Macro International, Inc., and Baylor College

of Medicine

Houston, Texas

Baylor College of Medicine is working with

Macro International, a computer technology

applications company, to develop and implement

an asthma education program for 7- to 12-yearold African American and Hispanic children in

the inner-city areas of Houston. The project is

using interactive multimedia and decisionsupport-systems technology to tailor instruction

to individual children with asthma and generate

specific recommendations for each child’s family,

health care provider, and school. Currently, the

computer-based instructional system is being

tested with children during scheduled visits to

health care providers. The tailored instruction is

based on data on the child’s medical history and

personal characteristics (such as age, gender, race

or ethnicity, culture, and literacy). Eventually,

the system will be applied to other settings, such

as emergency departments, where it will encourage regular primary care and create individualized asthma management plans. Additional

information about this project is available from

Robert S. Gold, Ph.D., Dr.P.H., principal investigator. Dr. Gold can be reached at Macro International, Inc., 11785 Beltsville Drive, Calverton,

MD 20705; the telephone number is (301) 572-

0200.

National Institute of Allergy and Infectious

Diseases/National Institute of Environmental

Health Sciences

National Cooperative Inner-City Asthma

Study

Since 1991, the National Cooperative Inner-City

Asthma Study has been involved in the design,

implementation, and evaluation of a comprehensive intervention program to reduce asthma

morbidity among urban African American and

Latino children. Eight centers are participating

in this study, which has been conducted in two

phases. In phase I, baseline data on health care

utilization and access, adherence to medications,

family functioning, home environment, and

household demographics were collected and

evaluated. Physiological data were also collected

and analyzed. Phase II consists of a multidimensional approach to reduce asthma morbidity by

training families to translate asthma knowledge

into health-promoting skills and behavioral

changes. A key component of the intervention is

the use of asthma counselors, specially trained

social workers who work closely with families

over an extended period of time, troubleshoot,

and empower families to address a variety of

problems. A standardized risk assessment tool

was created to screen individual children for the

medical, psychosocial, and environmental risk

factors identified in phase I so that the intervention could be appropriately tailored. For additional information about the National Cooperative Inner-City Asthma Study, please contact the

Office of Epidemiology and Clinical Trials,

National Institute of Allergy and Infectious

Diseases, Solar Building, Room 4A23, 6003

Executive Boulevard, Rockville, MD 20852; the

telephone number is (301) 496-0982.
43

Publications

Butz AM, Malveaux FJ, Eggleston P, et al. Use of

community health workers with inner-city

children who have asthma. Clin Pediatr

33(3):135-141, 1994.

Butz AM, Malveaux FJ, Eggleston PA, et al. A

review of community-based asthma interventions

for inner city children. Pediatr Asthma Allergy

Immunol 8:149-156, 1994.

Evans, D. To help patients control asthma, the

clinician must be a good listener and teacher

[editorial]. Thorax 48(7):685-687, 1993.

Fisher EB, Jr., Auslander W, Sussman L, Owens

N, Jackson-Thompson J. Community organization and health promotion in minority neighborhoods. Ethnicity Dis 2(3):252-272, 1992.

Fisher EB, Jr., Sussman LK, Arfken C, et al.

Targeting high risk groups: Neighborhood

organization for pediatric asthma management in

the Neighborhood Asthma Coalition. Chest 106(4

Suppl):248S-259S, 1994.

Gaioni SJ, Fisher EB, Jr., Strunk RC. Identification and management of psychosocial factors. In:

Bierman CW, Pearlman DS, Shapiro GG, Busse

WW (Eds.) Allergy, Clinical Immunology and

Asthma Management in Infants, Children and Adults.

3rd edition. Orlando, FL: W.B. Saunders Company, in press.

Hendricson WD, Wood PR, Hidalgo HA,

Kromer ME, Parcel GS, Ramirez AG. Implementation of a physician education intervention: the

Childhood Asthma Project. Arch Pediatr Adolesc

Med 148(6):595-601, 1994.

Huss K, Rand CS, Butz AM, et al. Home environmental risk factors in urban minority asthmatic children. Ann Allergy 72(2):173-177, 1994.

Mellins RB, Evans D, Zimmerman B, Clark NM.

Patient compliance: are we wasting our time and

don’t know it [editorial]? Am Rev Respir Dis

146(6):1376-1377, 1992.

Rand CS, Butz AM, Huss K, Eggleston P,

Thompson L, Malveaux FJ. Adherence to therapy

and access to care: the relationship to excess

asthma morbidity in African American children.

Pediatr Asthma Allergy Immunol 8:179-184, 1994.

Strunk RC. Death due to asthma: new insights

into sudden unexpected deaths, but the focus

remains on prevention [editorial]. Am Rev Respir

Dis 148(3):550-552, 1993.

Strunk RC, Fisher EB, Jr. Risk factors for morbidity and mortality in asthma. In: Szefler SJ, Leung

DYM (Eds.) Severe Asthma: Pathogenesis and

Clinical Management. New York: Marcel Dekker,

in press.

Strunk RC, Fisher EB, Jr., Davis S, Sussman L.

Use of prospective disease management to

minimize asthma symptoms and maximize

potential. In: Gershwin ME, Halpern GM (Eds.)

Bronchial Asthma Principles of Diagnosis and

Treatment Totowa, NJ: Humana Press, 1994. pp.

661-690.

Wood PR, Hidalgo HA, Prihoda TJ, Kromer ME.

Hispanic children with asthma: morbidity.

Pediatrics 91(1):62-69, 1993.

APPENDIX II:

RESOURCES
44

ASTHMA MANAGEMENT IN MINORITY CHILDREN

Materials

Educational materials and research tools from

several of the projects are available for sale from

the National Technical Information Service

(NTIS). Cost and ordering information can be

obtained by calling (703) 487-4650 or writing to

NTIS, 5825 Port Royal Road, Springfield, VA

22161.

An Intervention for Hispanic Children with

Asthma (Texas project)

• Flipcharts (text in both English and Spanish)

– Symptoms (7 cards)

– Peak Flow (3 cards)

– Medications (4 cards)

– Causes (6 cards)

• Videotape (available in English and Spanish);

each tape contains the following segments:

“Recognizing asthma symptoms—Before it’s

too late” (4:31)

“Avoiding trips to the emergency room” (3:54)

“I can do it: exercise and asthma” (3:58)

“Your breathing meter: it can make a

difference” (3:52)

“Asthma medicines: they will help you” (3:54)

“Breathe easy: follow your medication plan”

(3:47)

“The fight against asthma: causes of asthma”

(4:42)

“Cigarette smoking and asthma: a bad

combination” (3:47)

• Handouts/Worksheets (text in both English

and Spanish)

– Symptoms: “What is easy to do?”

– Peak flow: “How to use your peak flow

meter” and “Daily record chart”

– Medications: “Medicines”

– Causes: “Asthma causes”

• Instructional guide (includes behavioral and

learning objectives, a list of required

equipment/supplies, and a teaching outline for

each of four teaching modules)

• Enrollment questionnaires (parent version

available in English and Spanish; child version

in English only)

A Self-Management Educational Program for

Hispanic Asthmatic Children (New Mexico

project)

• Your Child and Asthma (comprehensive laylanguage booklet describing asthma causes,

symptoms, and treatment; 30 pages)

Neighborhood Asthma Coalition (St. Louis

project)

• Neighborhood Asthma Coalition Summer Day

Camp 1995: Curriculum Guide for Program

Coordinators (contains teaching instructions,

script, and health messages for daily asthma

lessons)

• Neighborhood Asthma Coalition: Physician’s

Guide (includes patient education materials for

outpatient settings)

Community Interventions for Minority

Children With Asthma (Washington, D.C./

Baltimore project)

• The A+ Asthma Club (illustrated workbook for

six meetings)

• The A+ Asthma Club: A Book for the Family

• Parental Baseline Questionnaire
45

Other Asthma Information Sources

The following organizations are active in asthma

education and research. For information and

materials, contact:

• Allergy and Asthma Network/Mothers of

Asthmatics, Inc. (1-800-878-4403)

• American Academy of Allergy and

Immunology (1-800-822-2762)

• American College of Allergy and Immunology

(1-800-842-7777)

• American Lung Association (local chapters

listed in telephone directories)

• Asthma and Allergy Foundation of America

(1-800-727-8462)

• National Jewish Center for Immunology and

Respiratory Medicine Information Service

(1-800-222-5864)

• National Institute of Allergy and Infectious

Diseases (301-496-5717)

• NHLBI Information Center (301-251-1222)

APPENDIX II: RESOURCES
46

ASTHMA MANAGEMENT IN MINORITY CHILDREN
47

APPENDIX III:

INSTRUMENTS

Instruments Not Available.

To obtain a copy of the instruments, order the printed publication.

Fax: 301-251-1223

Mail: NHLBI Information Center

Attention: Web Site

PO Box 30105

Bethesda, MD 20824-0105
48

ASTHMA MANAGEMENT IN MINORITY CHILDREN

ASTHMA TREATMENT PLAN FORM (NEW YORK PROJECT)

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APPENDIX III: INSTRUMENTS

ASTHMA TREATMENT PLAN FORM (NEW YORK PROJECT) CONTINUED

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50

ASTHMA MANAGEMENT IN MINORITY CHILDREN

ASTHMA SELF-MONITORING PLAN (NEW MEXICO PROJECT)

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51

APPENDIX III: INSTRUMENTS

ASTHMA MANAGEMENT PLAN—WHEN SYMPTOMS INCREASE (NEW MEXICO PROJECT)

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52

ASTHMA MANAGEMENT IN MINORITY CHILDREN

ASTHMA 1...2...3 PLAN (ST. LOUIS PROJECT)

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53

DIAGNOSE AND CLASSIFY SEVERITY OF ASTHMA

APPENDIX III: INSTRUMENTS

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ASTHMA MANAGEMENT IN MINORITY CHILDREN

MANAGEMENT OF AN ASTHMA ATTACK: HOME TREATMENT

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55

MEDICAL HISTORY FORM (NEW MEXICO PROJECT)

APPENDIX III: INSTRUMENTS

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ASTHMA MANAGEMENT IN MINORITY CHILDREN

MEDICAL HISTORY FORM (NEW MEXICO PROJECT) CONTINUED

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MEDICAL HISTORY FORM (NEW MEXICO PROJECT) CONTINUED

APPENDIX III: INSTRUMENTS

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58

ASTHMA MANAGEMENT IN MINORITY CHILDREN

ASTHMA SCREENING QUESTIONNAIRE (NEW YORK PROJECT)

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APPENDIX III: INSTRUMENTS

ASTHMA INFORMATION CARD (NEW YORK PROJECT)

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ASTHMA MANAGEMENT IN MINORITY CHILDREN

HEALTH FACILITATOR TELEPHONE INTERVIEW (NEW MEXICO PROJECT)

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Discrimination Prohibited:

Under provisions of applicable

public laws enacted by Congress

since 1964, no person in the

United States shall, on the

grounds of race, color, national

origin, handicap, or age, be

excluded from participation in,

be denied the benefits of, or be

subjected to discrimination under

any program or activity (or, on

the basis of sex, with respect to

any education program or activity) receiving Federal financial

assistance. In addition, Executive

Order 11141 prohibits discrimination on the basis of age by contractors and subcontractors in the

performance of Federal contracts,

and Executive Order 11246

states that no federally funded

contractor may discriminate

against any employee or applicant

for employment because of race,

color, religion, sex, or national

origin. Therefore, the National

Heart, Lung, and Blood Institute

must be operated in compliance

with these laws and Executive

Orders.
U.S. DEPARTMENT OF HEALTH AND 

HUMAN SERVICES

Public Health Service

National Institutes of Health

National Heart, Lung, and Blood Institute

NIH Publication No. 96-3675

November 1995