National Asthma Education and Prevention Program · 2014-04-10 · ASTHMA MANAGEMENT IN MINORITY...

AS T H M A

MA N A G E M E N T

I N MI N O R I T Y

CH I L D R E N:

PR A C T I C A L IN S I G H T S F O R

CL I N I C I A N S, RE S E A R C H E R S ,

A N D PU B L I C HE A LT H

PL A N N E R S

N A T I O N A L I N S T I T U T E S O F H E A L T HN A T I O N A L H E A R T , L U N G , A N D B L O O D I N S T I T U T E

N a t i o n a l A s t h m a E d u c a t i o n a n d P r e v e n t i o n P r o g r a m

Min Chil Covers and title p.qxd 2/3/97 10:29 AM Page C1

AS T H M A

MA N A G E M E N T

I N MI N O R I T Y

CH I L D R E N:

PR A C T I C A L IN S I G H T S F O R

CL I N I C I A N S, RE S E A R C H E R S ,

A N D PU B L I C HE A LT H

PL A N N E R S

NIH PU B L I C AT I O N

NO. 96-3675

NO V E M B E R 1995

NAT I O N A L IN S T I T U T E S

O F HE A LT H

National Hear t , Lung ,

and Blood In s t i tu t e


4

ASTHMA MANAGEMENT IN MINORITY CHILDREN

iii

CONTENTS

Asthma Management in Minority ChildrenWorking Group Members .............................. v

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

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

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

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

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

An Intervention for Hispanic ChildrenWith Asthma ................................................. 5

A Self-Management Educational Programfor Hispanic Asthmatic Children .................. 6

A Childhood Asthma Program inNew York City Health Department Clinics ... 7

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

Community Interventions for MinorityChildren 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 andRecruitment ................................................. 20

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

Staffing ........................................................ 24

iv


Questionnaires and AssessmentMeasures...................................................... 24

Design and Assessment of InterventionDelivery ........................................................ 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 RetainingStaff and Volunteers ............................ 37

Barriers to Implementationof Intervention ..................................... 38

Appendix I: Additional Minority AsthmaIntervention Projects .................................... 41

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

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

v


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 ExpertNational Asthma Education and Prevention

Program

Leslie Cooper, R.N., M.P.H., Ph.D.Health Scientist Administrator/EpidemiologistDivision of Lung Diseases

Robinson Fulwood, M.S.P.H.CoordinatorNational Asthma Education and Prevention

Program

Suzanne Hurd, Ph.D.DirectorDivision of Lung Diseases

vi


James Kiley, Ph.D.Chief, Airway Biology and Disease ProgramDivision of Lung Diseases

Ellen SommerPublic Affairs SpecialistOffice of Prevention, Education, and Control

Virginia Silver Taggart, M.P.H.Health Specialist AdministratorDivision 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 BryanAllergy 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 MackHealthy 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 arequest for applications in 1989 for demonstrationand education research programs to develop,implement, and evaluate interventions to reducemorbidity from asthma among African Americanand Hispanic Children. Five projects were fundedunder this 5-year program, titled “Interventionsfor the Control of Asthma Among Black andHispanic Children.” The grantees are based atHoward University in Washington, D.C.; Colum-bia University in New York City; The Universityof Texas Health Science Center-San Antonio;Washington University in St. Louis, Missouri; andthe University of New Mexico in Albuquerque.

The goals of this research effort were to developmodel, replicable programs to reduce asthmamorbidity, decrease inappropriate use of healthcare resources, and enhance the quality of life ofAfrican American and Hispanic children withasthma. Some interventions included efforts toincrease the knowledge and change the behaviorsof health care providers, as well as those ofpatients and their families and other groupswithin the community. Approaches to mobilizecommunity resources to increase access to care,integrate patient education into medical care, andeducate health professionals about asthma and itsmanagement were encouraged.

The approaches used by each of the five granteesin implementing their interventions variedwidely. Based on their experiences, a number ofinsights have emerged about the design and

evaluation of educational and managementprograms for asthma, strategies for recruitingpatients and staff, and techniques and resourcesfor community and professional education. These“lessons learned” are presented herein as practicaltips for researchers, clinicians, and communityhealth leaders and/or program planners. Wherepossible, the lessons are illustrated with specificexamples from one or more of the five projects.However, some lessons were formulated throughconsensus among the investigators, who metthree times in 1994 and 1995. The meetings alsoincluded representatives from the NHLBI andfrom the community.

This document is intended as a mechanism forsharing the experiences of the five investigators indeveloping asthma management interventions; itdoes not contain study results. This information,along with detailed information about studymethodology, is being published independentlyby each of the investigators. Some results arealready available (see appendix II for a list ofpublications).

The NHLBI’s National Asthma Education andPrevention Program (NAEPP) will disseminatethis document. Established in 1989, the NAEPPis charged with transferring asthma researchfindings and scientific consensus to healthprofessionals, patients, and the public for appro-priate adaptation into their health care practicesand individual lifestyles. The NAEPP’s Coordi-nating Committee, which consists of 36 medical,

viii


professional, and lay organizations that areinvolved in asthma education and managementactivities, provides effective channels for dissemi-nation. One of the hallmarks of the NAEPP’sbroad-based activities conducted with coordinat-ing committee members was publishing andwidely disseminating the 1991 Expert PanelReport: Guidelines for the Diagnosis and Managementof Asthma.

A continuing challenge in asthma control efforts isreaching minority populations. These populationshave some of the highest rates of prevalence,

emergency department use, and hospitalizationsfrom asthma. The NAEPP’s initiatives in this areahave included conducting professional educationsessions, distributing patient and public educationmaterials written in English and Spanish, andconducting mass media campaigns for AfricanAmerican and Hispanic populations.

It is hoped that the information in this documentwill assist others in planning and implementingasthma management programs in various settingsto help reduce morbidity and mortality fromasthma in minority populations.

Claude Lenfant, M.D.DirectorNational Heart, Lung, and Blood Institute

1

BACKGROUND

Asthma is a major public health problem inchildren, especially children living in poverty.Children—those younger than age 18—have a41 percent higher prevalence of asthma than thegeneral population (7.2 versus 5.1 percent in1993) (National Center for Health Statistics,1994a). This means that nearly 5 million chil-dren in the United States have an illness thatsometimes takes their breath away and limitstheir activities (National Center for HealthStatistics, 1994a). In fact, children with asthmamiss an estimated average of about 1 full week ofschool per year due to their illness, makingasthma one of the most common reasons forschool absences (Newacheck and Taylor, 1992).

Asthma is a major problem for African Ameri-cans. The prevalence of asthma in 1993 inAfrican Americans under age 45 was about 23percent higher than in whites (National Centerfor Health Statistics, 1994a). In 1992 thehospitalization rate for African Americans wasmore than 400 percent higher than the rate forwhites (National Center for Health Statistics,1994b), and the age-adjusted asthma mortalityrate was 300 percent higher than for whites(Kochanek and Hudson, 1995). African Ameri-can children have a 24 percent higher prevalenceof asthma than white children, more limitation oftheir activity due to asthma, and more frequenthospitalizations from asthma (Weitzman et al.,

1992). Lack of access to medical care, poverty,and delay in health-seeking behaviors are relatedto poor asthma outcomes in African Americans(Malveaux et al., 1993).

Some groups of Hispanic children are at risk forasthma-related problems because of languagebarriers, poverty, lack of access to medical care,and culturally based beliefs about health andillness. In addition, one subgroup within theHispanic population, Puerto Ricans, has muchhigher rates of asthma and asthma mortality thanothers. During 1982-1984, prevalence of asthmain Puerto Rican children living in New York Citywas significantly higher, at 11.2 percent, than anyother subpopulation studied to date (Carter-Pokras and Gergen, 1993). By contrast, theprevalence of asthma within Mexican Americanchildren was 2.7 percent, which is somewhatlower than the general population (Carter-Pokrasand Gergen, 1993). The age-adjusted asthmamortality rate for Puerto Ricans in 1979-1981was also much higher (4 per 100,000) than therates 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 projectsdiscussed in this report were initiated with thegoals of reducing asthma morbidity, decreasinginappropriate use of health care resources, andenhancing the quality of life of African Americanand Hispanic children with asthma.

INTRODUCTION

2


HIGHLIGHTS OF PRACTICAL INSIGHTS

Many important insights have emerged from thedevelopment and implementation of the fiveprojects. These insights or “lessons learned” arediverse, both in content and applicability, andhave been organized into three sections: clinicalnotes, research notes, and public health notes.Individual lessons appear as bold statements thatare, in most cases, followed by specific illustra-tions from the projects.

The clinical notes section contains insights in twogeneral areas: patient education and manage-ment, and health professional education. Theresearch notes section, which is designed with thenovice researcher in mind, offers practical tips forall stages of research, from pilot studies toevaluation. The public health notes sectioncovers a variety of issues relevant to the planningand implementation phases of minority asthmainterventions.

The grantees selected varied widely in theirapproach to improving asthma care for minoritychildren. Projects focused on an urban commu-nity, a school system, a rural medical care system,a residency training program, and a public healthclinic system. From this diversity, some commoninsights emerged, such as:

1. Community-based and school programs needto ensure that primary care providers who areknowledgeable about asthma managementprovide appropriate asthma care. Education inthe community or school alone is insufficient.

2. Clinicians should be trained to treat asthma by(1) building their skills in assessment andmanagement, (2) providing an environmentthat supports implementation of currentrecommendations, and (3) encouragingclinicians to address one or two aspects of self-management at each visit. Traditional

continuing medical education (CME) lecturesare not enough to modify health careproviders’ behaviors.

3. Obtaining input from intended audiences (layand professional) during program planning canmaximize the appropriateness of interventionstrategies. Focus groups, needs assessments,and pilot testing can result in better tailoredprograms.

4. Educational interventions should addressattitudes, beliefs, behaviors, and skills of theintended group, not just knowledge. Ethnicand cultural appropriateness, reading level,and language barriers are important factors toconsider.

5. Asthma patient education can be made simpleand brief so that clinicians will implement it.

6. To tailor education to patients’ needs,clinicians should assess patients’ concernsabout asthma and asthma medicines throughopen-ended questions and similar interviewapproaches.

7. Clinicians should discuss with parents thecommon problem that medications are ofteninappropriately discontinued when the childappears well.

8. Recognition should be provided to health careprofessionals and patients who work toimprove asthma care or manage their asthma.

9. The number of patients retained in a study canbe increased through an honest, sensitive, andunderstanding personal relationship with staff;convenience; incentives; and pleasant andrewarding experiences at followup visits.

These and other “lessons” will be elaborated uponlater in this report. The next section brieflydescribes the five intervention studies from whichthese lessons were learned.

3

References

Carter-Pokras OD, Gergen JP. Reported asthmaamong Puerto Rican, Mexican American, andCuban children, 1982 through 1984. Am J PublicHealth 83(4):580-582, 1993.

Kochanek KD, Hudson BL. Advance report offinal mortality statistics, 1992. Monthly Vital StatRep 45(6) Suppl. (March 22). Hyattsville, MD:National Center for Health Statistics, 1995.

Malveaux FJ, Houlihan D, Diamond EL. Charac-teristics of asthma mortality and morbidity inAfrican-Americans. J Asthma 30(6):431-437,1993.

National Center for Health Statistics. CurrentEstimates 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. NationalHospital Discharge Survey: Annual Summary, 1992.Series 13, No. 19. DHHS Pub. No. (PHS) 94-1779. Hyattsville, MD, 1994b.

Newacheck PW, Taylor WR. Childhood chronicillness: prevalence, severity, and impact. Am JPublic Health 82(3):364-371, 1992.

Weitzman M, Gortmaker SL, Sobol AM, PerrinJM. Recent trends in the prevalence and severityof asthma. JAMA 268(19):2673-2677, 1992.

INTRODUCTION

4


5

AN INTERVENTION FOR HISPANIC CHILDREN

WITH ASTHMA

Principal Investigator: Pamela R. Wood, M.D.,Associate Professor of Pediatrics, University of TexasHealth Science Center (UTHSC)-San Antonio. Co-Investigators: Humberto Hidalgo, M.D., Departmentof Pediatrics, UTHSC; Thomas Prihoda, Ph.D.,Department of Pathology, UTHSC; Megan Kromer,Ph.D., Instructional Development, UTHSC; WilliamHendricson, M.S., Instructional Development,UTHSC; Amelie Ramirez, Dr.P.H., Director, SouthTexas 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 ofPublic Health, UTHSC-Houston.

The purpose of this study was to design, imple-ment, and evaluate an intervention program forHispanic children with asthma that included bothphysician and patient/family education compo-nents. The study questions were: (1) Will aphysician education intervention result in in-creased physician knowledge and improvedmedical management for Hispanic children withasthma? (2) Will a focused educational interven-tion for Hispanic children with asthma and theirfamilies result in decreased morbidity andimproved quality of life?

Prior to enrollment of patients, 44 pediatricresident physicians participated in an interven-tion, based on the NHLBI Expert Panel Report:Guidelines for the Diagnosis and Management ofAsthma, that addressed the following areas:physician knowledge, information-processing

skills, motivation, and the clinic environment.Components of the intervention were seminars onmedical management, pocket cards with treat-ment algorithms, improved access to peak flowmeters and spirometry, an interactive computer-based program, and individualized feedback.Physician knowledge was measured preinterven-tion and postintervention using a 36-itemcomputer-based test. In addition, participantswere asked to rate their educational experiencefor 16 pediatric topics, including asthma. Finally,the effect of the physician intervention on specificphysician behaviors was assessed through medicalrecord review.

One hundred and forty-five children with asthma(79 percent Hispanic), ages 6 to 18 years, whoreceive care in a pediatric residents’ continuityclinic, were enrolled. A research assistant inter-viewed parents and a research nurse interviewedchildren using standardized questionnaires toobtain information about health beliefs, reportedhealth behaviors, knowledge and attitudes aboutasthma, morbidity, acculturation, andsociodemographic factors. A research nurseperformed spirometry on each subject. Addi-tional information was obtained by review ofmedical records and school attendance records.After baseline data were collected, patients wererandomized into treatment and control groups.Treatment group patients and their familiesparticipated in the patient education program,which consisted of four separate 1-hour sessions:symptoms of asthma, causes of asthma, medica-tions, and peak flow. The four sessions took place

PROJECT DESCRIPTIONS

6


over a 6-week period, and each session wasconducted by a nurse educator. Culturallysensitive educational materials included bothprint (e.g., flip charts, take-home brochures) andvideotape materials. The videotapes featuredchildren from the clinic and highlighted whatthey did to successfully manage their asthma. Allmaterials were developed in both English andSpanish. Followup data were obtained byinterview, medical record review, and spirometryat 6, 12, 18, and 24 months following enroll-ment.

Intervention and control group children werecompared for morbidity (number of emergencydepartment [ED] visits, hospitalizations, schooldays missed, and days with impairment) andquality of life (impact on family and functionalstatus), after controlling for confounding vari-ables. Secondary data analysis will examine theeffect of the intervention on knowledge, reportedhealth behaviors, and postintervention spirom-etry. If effective, the physician education andpatient education programs will serve as modelsfor the implementation of similar programs inoutpatient clinic settings that serve Hispanicchildren with asthma.

For additional information about the Texasproject, contact Pamela R. Wood, M.D., Associ-ate Professor of Pediatrics, The University ofTexas 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., Profes-sor and Chair, Department of Pediatrics, University ofNew Mexico (UNM). Co-Investigators: Jean Hanson,R.N., M.N., Department of Pediatrics, UNM; JodiLapidus, M.S., Department of Pediatrics, UNM;Evelyn Oden, M.D., Medical Director, Children’sMedical Services, Santa Fe, New Mexico.

The Children’s Medical Services of New Mexicoand the University of New Mexico PediatricPulmonary Program together designed andevaluated the impact of a new statewide compre-hensive asthma program that provided medicalcare and coverage for medical costs for low-income children with moderately severe-to-severeasthma. The specific aim of this project was todetermine whether comprehensive medical care(CMC) plus an educational asthma self-manage-ment program that included home visits bycommunity lay educators (family educators) forrural Hispanic children and their families wouldhave an impact on asthma morbidity, cost ofasthma care, and family adaptation.

A randomized block design was used withrandom assignment of subjects by county ofresidence to experimental groups of (1) CMC,which was standard tertiary care with individualpatient education, or (2) CMC-Plus, which wasstandard tertiary care combined with a struc-tured, interactive group self-managementeducation program, Open Airways/RespiroAbierto. In addition, CMC-Plus patients receivedin-home education and intervention from com-munity-based Hispanic family educators trainedin an empowerment model of family intervention,in-home support, and asthma education. Medicalcare for CMC and CMC-Plus was provided by theUniversity of New Mexico School of MedicinePediatric Pulmonary Division and in the localcommunities in collaboration with and transfer-ring care back to the primary care/referringphysicians.

The study tested the hypothesis that provision ofCMC-Plus, as compared with CMC alone, would(1) reduce asthma morbidity in Hispanic childrenwith asthma as indicated by decreased ED visits,hospitalizations, daily symptoms, and improvedpulmonary function parameters; (2) reducehospitalization and ED costs, but not decreasecosts of providing primary asthma care; (3)

7

reduce family stress, as measured by theParenting Stress Index and Impact on FamilyScale; (4) enhance self-management and self-efficacy; and (5) enhance self-reported satisfactionwith delivery of asthma-related health careservices, in both the tertiary and primary careareas.

This project has important implications for otherStates that are considering providing funding forasthma care in that it will give insight into themost cost-effective way to provide care for ruralchildren with asthma. The New Mexico AsthmaProject will also provide valuable insights into themanagement of asthma in Hispanic and NativeAmerican populations.

For additional information about the NewMexico project, contact Jean Hanson, R.N.,M.N., Department of Pediatrics, University ofNew Mexico School of Medicine, 2211 LomasBoulevard, 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 Pulmo-nary Division, Columbia University College ofPhysicians & Surgeons (CU). Co-Principal Investiga-tor: Katherine Lobach, M.D., Assistant Commis-sioner for Child and Adolescent Health, New YorkCity Health Department, Director, Bureau of ChildHealth (BCH), and Clinical Professor of Pediatrics,Albert Einstein College of Medicine. Co-Investiga-tors: David Evans, Ph.D., Assistant Professor ofPublic Health, Department of Pediatrics, CU; MosheJ. 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 forMedical Affairs, BCH; Ilene Klein, M.F.A., DeputyDirector for Operations, BCH; Caroline Donahue,R.N., M.A., Deputy Director for Nursing Affairs, BCH;Barry Zimmerman, Ph.D., Professor of EducationalPsychology, City University of New York GraduateCenter; Noreen M. Clark, Ph.D., Professor of Health

Education and Health Behavior, University of Michi-gan School of Public Health; Lucille Rosenbluth,M.P.A., President, Medical and Health ResearchAssociation of New York City, Inc.; Deirdre Burke,M.P.H., Grants Management, Medical and HealthResearch Association of New York City, Inc.; SandraWiesemann, R.N., M.P.S., Project Coordinator,Medical and Health Research Association of NewYork City, Inc. Consultant: Marcia Pinkett-Heller,M.P.H., Department of Health Education, Jersey CityState College.

Columbia University College of Physicians andSurgeons (CU) and the New York City Depart-ment of Health, Bureau of Child Health (BCH),the University of Michigan, City University ofNew York, and the Medical and Health ResearchAssociation of New York, Inc. (MHRA), cooper-ated in research to improve asthma care forminority children with asthma in New York City.

BCH operated 40 clinics that provided primary,preventive care to infants and children. Morethan 80 percent of the clinic patients wereAfrican American or Latino, and more than90 percent were from minority groups. Regis-tered children were assigned to their own pedia-trician/nurse team and made regular scheduledvisits, following Child/Teen Health Plan (C/THP)guidelines, for health assessment, diagnosticscreening, and preventive care. The clinics alsoprovided diagnosis, treatment, and followup ofacute illnesses as well as referral and coordinationby the child’s clinic team for care by otherproviders. All visits and medications wereprovided free to patients, and for many parentswithout medical insurance, the BCH clinics weretheir only source of continuing pediatric care.Although the clinics have provided some care foracute episodes of asthma in the past, mostchildren have been referred to other sources ofcare. At the onset of the study, fewer than 2 per-cent of the children enrolled in BCH clinics hada diagnosis of asthma in their clinic medicalrecords, suggesting that there were many uniden-tified cases of asthma in the patient population.


8


The goal of the program was to improve thehealth status of inner-city African American andLatino children with asthma by providing themwith a comprehensive system of preventive,continuing care that included up-to-date short-and long-term pharmacologic treatment, familyhealth education, and community outreach. Thestudy examined the hypothesis that training tocreate a comprehensive system of preventive,continuing care, including medical care, familyhealth education, and community outreach, will(1) attract and retain families who have childrenwith asthma in continuing care relationships inthe BCH clinics; (2) improve staff confidence,therapeutic skill, and educational practices in thediagnosis and treatment of childhood asthma;and (3) improve the health status of patients andthe quality of life of their families.

Among the key evaluation criteria for the hy-pothesis were, respectively: (1) increased num-bers of patients identified with asthma andincreased frequency of scheduled clinic visits forasthma care; (2) improved staff self-efficacy,increased dispensing of inhaled anti-inflammatorytherapy for children with moderate-to-severeasthma, and better use of communications skillsto identify patient concerns and convey appropri-ate educational messages; and (3) improvedquality of life for families, reduction in morbidity(days with limited activity and night sleepdisturbed by asthma symptoms), and decreaseduse of emergency health care services for asthma.

An experimental research design was used toevaluate the hypothesis and to determine whetherthe comprehensive system of preventive, continu-ing care could be institutionalized within thedepartment of health. The project was carriedout in two phases. In phase I, program facultytaught the clinic staff to provide comprehensivecare for asthma and assessed the impact of thiseducation on attracting families to continuity ofcare, changing staff practice behavior, and

reducing morbidity. In phase II, the researchersmade the comprehensive care system self-sustaining within the department of health bydemonstrating that the same outcomes could beachieved when BCH physicians and nursesupervisors who were trained in phase I taughtstaff from the clinics not included in phase I.

For additional information about the New Yorkproject, contact Robert B. Mellins, M.D., Direc-tor, Pediatric Pulmonary Division, Department ofPediatrics, Columbia-Presbyterian MedicalCenter, Babies and Children’s Hospital of NewYork, BHS 101, 3959 Broadway, New York, NY10032, or David Evans, Ph.D., Assistant Profes-sor of Pediatrics, Director, Asthma ResearchProgram, Department of Pediatrics, Columbia-Presbyterian Medical Center, Babies andChildren’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, WashingtonUniversity School of Medicine (WU). Co-PrincipalInvestigator: Robert C. Strunk, M.D., Professor ofPediatrics, Director of Division of Allergy and Pulmo-nary Medicine, Department of Pediatrics, WU.Project Director: Linda Sussman, Ph.D., ResearchInstructor in Medicine, Research Associate in Anthro-pology, WU. Investigators: Cynthia L. Arfken, Ph.D.,Research Assistant Professor of Medicine, WU; JaniceMunro, M.Ed., Center for Health Behavior Research,Department of Medicine, WU; Roslyn K. Sykes,Ph.D., Visiting Research Assistant Professor ofMedicine, Associate Professor, School of Nursing,Southern Illinois University at Edwardsville. Collabo-rators: 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 HillNeighborhood Services.

9

The Neighborhood Asthma Coalition wasdeveloped as a collaboration of Grace HillNeighborhood Services in St. Louis and research-ers at Washington University with the goal ofreducing morbidity from asthma and increasingthe extent to which children with asthma in low-income, African American neighborhoods leadfull, active, normal lives. Other aims were toincrease understanding of how a neighborhood,peer-based program may encourage betterasthma care and quality of life among low-income, African American children with asthmaas well as children from other minority orunderserved groups.

Organized around Neighborhood WellnessCouncils in each of four predominantly AfricanAmerican and low-income neighborhoods in St.Louis, the Neighborhood Asthma Coalitionprovided a wide range of activities and promo-tional events to raise neighborhood understand-ing of asthma and to engage children withasthma, their friends, and their families ineducational activities stressing three key con-cepts: take asthma seriously; treat asthmasymptoms with asthma medication; and whensymptoms persist, get help. Additional educa-tional events expanded on these key concepts andincluded attention to triggers, self-monitoringand self-management according to symptoms,and other curricular elements drawn from OpenAirways. Neighborhood residents were trainedand employed to assist with the program and,especially, to provide individualized basic asthmaeducation and support to children with asthmaand their caregivers. The Neighborhood AsthmaCoalition established a wide range of programsand activities to pursue its goals. Highlightsincluded training neighborhood residents to workas CASS workers (“Change Asthma throughSocial Support,” a name chosen by NeighborhoodWellness Councils); asthma education activitiescarried out by parents in neighborhood schoolsand churches; and an innovative, neighborhood-

based asthma summer camp that involved familymembers and friends as well as children withasthma themselves.

Practicing pediatricians serving the neighbor-hoods have participated in a Physicians’ AdvisoryBoard. This group has reviewed levels of care,especially regular, nonacute care available in theneighborhoods, and developed mutually agreed-upon standards for acute and regular asthmacare. The board also serves as a point of contactbetween the neighborhood-based program andprofessionals. The emergency department staff ofSt. Louis Children’s Hospital developed a“1...2...3...Plan” for asthma patients that empha-sizes primary care followup of emergency visits asa way of prompting care through primaryproviders.

A quasi-experimental cohort design was used.Children from study neighborhoods were com-pared with children from sociodemographicallycomparable neighborhoods in St. Louis. Thestudy tested the hypothesis that reductions inmorbidity, increases in normal activities, andreductions in interference of asthma with dailylife would be greater in experimental than incontrol neighborhoods. Outcome/evaluationcriteria included utilization of emergency androutine asthma care (by provider records as wellas parents’ reports), symptoms of asthma (byparents’ reports), asthma management practices(parents’ reports), the extent to which childrenled normally active lives, and the extent to whichasthma interfered with children’s and families’routine activities.

For additional information about the St. Louisproject, contact Edwin B. Fisher, Jr., Ph.D.,Professor of Psychology and Medicine, Director,Center for Health Behavior Research, Washing-ton University School of Medicine, Suite 6700,4444 Forest Park Boulevard, St. Louis, MO63108; the telephone number is (314) 286-1901.


10


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 HopkinsAsthma and Allergy Center. Project Director: LeraThompson, M.S.P.H., Department of Microbiology,Howard University College of Medicine. Investiga-tors: 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 PediatricAllergy and Immunology, School of Medicine, JHU;Karen Huss, R.N., D.N.Sc., Postdoctoral ResearchFellow, School of Nursing, JHU.

This project was designed to test the effectivenessof a school-based asthma education intervention,a community health worker program, and acombination of the two in reducing the numberof ED visits, hospitalizations, and days of re-stricted activity among African American chil-dren with asthma in Washington, D.C., andBaltimore, Maryland.

Forty-two elementary schools (21 in Washingtonand 21 in Baltimore) were selected from areaswith predominately African American popula-tions to participate in this project. The schoolswere randomized into one of four study groups.Two cities were chosen to implement this projectbecause their size and proximity allowed theselection of a large enough sample to test a four-group design and because comparisons betweenoutcomes in the two cities provided valuable dataon the generalizability of this study’s findingsacross cities and school districts.

The selected schools were randomized to either acontrol group, a school-based asthma educationprogram, a community-based health workerprogram, or combined school-based educationand community health worker programs. Thetwo programs lasted 6 months.

In the asthma education intervention, a six-session curriculum was offered to elementary

school children in grades 1 through 6. In thisprogram children were taught by health educa-tors trained by program staff. The program wasdesigned to increase the child’s as well as thefamily’s knowledge about asthma and confidenceand skills needed to manage asthma.

In the community health worker intervention,trained individuals from the community inter-acted with the families of the children enrolled inthe program to assist in managing the child’sasthma. The community health workers con-ducted home visits on a regular basis to offeradvice on environmental issues and the develop-ment of an asthma action plan.

The primary aim of this study was to answer thefollowing questions: (1) Can a school-basedasthma education program set in the inner-cityschools increase children’s asthma knowledge andskills, increase self-efficacy, decrease schoolabsenteeism, and increase academic performancesamong African American children? (2) Can acommunity-based health worker programincrease preventive health care utilization,increase use of a primary care provider, decreaseED visits, decrease acute asthma episodes, andincrease asthma knowledge and skills amongAfrican American children? (3) Can a combinedintervention that addresses both asthma educa-tion and community health care access andutilization significantly improve on the separateinterventions’ ability to decrease asthma morbid-ity and related problems?

Outcome measures were utilization of emergencydepartment, number of hospitalizations, asthmasymptoms/asthma severity, academic perfor-mance, and asthma knowledge and skills.

For additional information about the Washing-ton, D.C./Baltimore project, contact LeraThompson, M.S.P.H., Project Director, HowardUniversity College of Medicine, Department ofMicrobiology, Room 3010, 520 W Street, N.W.,Washington, D.C. 20059; the telephone numberis (202) 806-4322.

11

Effective management of asthma requires regularvisits to a physician, patient education, adherenceto recommended medications, environmentalcontrol, and objective measurements of lungfunction. The researchers were faced with the

challenge of getting both clinicians and patientsto change the way they manage asthma. Lessonsresearchers learned in responding to this chal-lenge 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) itspotential 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 contractbetween doctor and patient can clarify expectations.

■ Clinicians should respect the cultural beliefs of minority patients and design interventions thatare culturally appropriate.

■ Clinicians should recognize and address parents’ reluctance to provide daily or frequentmedication 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. Traditionallectures are insufficient.

■ Graphic presentation of treatment plans, such as through flow charts, are useful in teachingasthma management to health professionals.

■ Strong administrative and supervisory staff support is important in interventions to improve thedelivery of asthma care in health systems.

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

12


• Patients should be educated about asthmamedications by (1) teaching them todistinguish medications used to treatchronic asthma (anti-inflammatorymedications) from those used to treat acuteepisodes (short-acting inhaled beta

2-

agonists) and (2) clarifying and repeatingtimes, doses, and amounts of allmedications (right medications, right use,including use of a metered-dose inhaler).

Researchers in the New Mexico projectdescribed medications as treating the quiet(chronic) parts of asthma (i.e., inhaled steroids,nedocromil, cromolyn) and the noisy parts ofasthma (inhaled beta

2-agonists).* The Texas

project described these medications as onesthat prevent symptoms and ones that treatsymptoms.

Other strategies to help patients understandthe difference between bronchodilator andanti-inflammatory medicines include (1)having patients bring all medicines to eachvisit, (2) using special labeling, and (3) havingpatients describe their medication use byasking them when they take medicationsduring their daily routine (not simply howmany times a day they use the medicine).

• Patients of appropriate age (at least age 5)and ability should be taught how to use apeak flow meter and how to monitorsymptoms.

(See public health notes section, page 34, for adescription of the simplified messages used in theSt. Louis community program.)

Culturally and linguistically appropriateapproaches to patient education are critical.Asking a few open-ended questions to assessthe patient’s concerns about asthma andasthma medicines can help the clinician to

PATIENT EDUCATION AND MANAGEMENT

Patient education can be brief and simple. Afew key points should be emphasized:

• Patient education should include simpleexplanations of the chronicity of asthma.

• Asthma education should raise expectationsof a normal, active life but also point outthat asthma episodes can be fatal if thedisease is not kept under control.

• Patients should be encouraged to implementenvironmental control measures, such asavoiding exposure to tobacco smoke in thehome or car, dust control, and having nowarm-blooded pets in the home.

All projects foundthat cigarettesmoking was moreprevalent thanexpected amongparents of asthma

patients. Fifty percent of patients were exposedto smoking at home. During every visit,patients should be asked who is smoking andwhere. People should be encouraged not tosmoke in the car or at home. The video used inthe Texas project, “Cigarette Smoking andAsthma: A Bad Combination,” was useful incommunicating the effects of smoking onasthma.

Community health workers visiting the homehad an impact on the home environment inWashington, D.C./Baltimore. The workersidentified environmental risks such as carpeting(which often cannot be removed because thefamily either lives in rental property or cannotafford to have it removed), cockroachinfestation, mold, and rodents.

It is important to inquire about pets. Some-times asking the names of the patients’ petswill elicit information.

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

Patient education can bebrief and simple so that

clinicians will implement it.

13

tailor health education and the therapeuticprogram to the needs of the patient.

The Washington, D.C./Baltimore researchersfound that the term “triggers” connoted imagesof violence for some children. Substituting thephrase “things that start asthma attacks” for“triggers” helped avoid misinterpretation. TheTexas researchers used the phrase “causes ofasthma problems” to avoid misunderstanding ofthe term “triggers.”

Clinicians should be aware that some culturalbeliefs may promote the use of “alternativemedicine.” New Mexico researchers found that30 percent of patients used alternative therapiesfor asthma such as chihuahua dogs, curanderos,acupuncture, and herbal preparations. The NewMexico project recommended inquiring aboutalternative treatments and not invalidating theremedies. Texas and New Mexico researchersfound that it is important to negotiate care andthe use of alternative treatments.

In the New York project, participation of staffmembers who spoke the language of the clinicpopulation was extremely important in under-standing the reasons behind nonadherence torecommended protocols.

It is important for clinicians to providepatients with clear, written, understandableinstructions on asthma management at home.A contract signed by the doctor and patientcan clarify expectations.

In New York, written forms for providing easilyunderstood long-term treatment plans were usedand appreciated by both physicians and patients(see appendix III). The form enables the physi-cian to outline a long-term treatment plan thathelps patients to make adjustments as symptomschange. Treatment plans placed on the refrigera-tor door remind families of the specific recom-mendations by the physician and when to call theclinic or go to the emergency department for

Written instructions are helpful to patients.

immediate care. If good control is maintained, thetreatment plan provides recommendations forreducing medications.

The New Mexico researchers showed that patientswho had a peak flow meter, clear instructions forits use, and an asthma action plan (see appendixIII) were able to manage their asthma effectively,despite living far from medical care services.

Initially, however, not all patients took the NewMexico program seriously. Children’s MedicalServices staff had patients sign a contract that theywould perform all the management methodsrecommended by the medical staff. It was espe-cially useful for patients who had not been takingtheir medications. The researchers also foundcontracts useful for dealing with smoking in thehome.

Objective measures (peak expiratory flow rate[PEFR] and/or spirometry) are valuable formonitoring the management of asthma and canbe used in a variety of ways with children 5years of age or older.

The more severe the asthma, the more likely thepatients will use a peak flow meter regularly.However, it is often unrealistic to expect patientsto do peak flow monitoring every day of their life.

Patients can use PEFR episodically to assess acutesymptoms. Those who live a great distance from

PRACTICAL INSIGHTS: CLINICAL NOTES

PHOTOGRAPH NOT AVAILABLE

14


at every clinic visit. As a result, medication couldbe adjusted accordingly. In addition, the spirom-etry readings were an important source offeedback to families.

Clinicians should inquire about patients’ useof over-the-counter medications.

Washington, D.C./Baltimore and St. Louisresearchers found that a high percentage ofpatients used over-the-counter cough medicinesand decongestants to treat asthma. New Mexicoresearchers found that many asthma patientsused Primatine Mist.

It is important that patients be able to affordor be provided with medications andequipment for acute asthma management athome.

In New York, a loaner program for nebulizers wascreated for families who could not afford topurchase them. The patients returned theequipment in good condition. In New Mexico,because of the distances from health care, every-one was provided a nebulizer and prednisone forhandling emergency situations.

Even though asthma is a chronic disease,many parents discontinue giving medicationswhen the child appears well.

The Washington, D.C./Baltimore researchersfound that many children were on inappropriateregimens and that their families were not knowl-edgeable about asthma prevention. Approxi-mately half of the children were responsible fortheir own medication (i.e., parents did notsupervise the taking of medicine). A largepercentage of the families used the emergencydepartment for primary asthma care; thus,ongoing asthma care was problematic. Manyparents thought it was unnecessary to givemedicine to children who were not symptomatic.This belief may be a major barrier to the contin-ued use of appropriate medication.

Spirometry is a valuable tool for monitoring asthmamanagement.

care can provide their PEFR measurement to thephysician over the telephone, which will enablethe physician to assess the severity of the episode.In New Mexico, peak flow measurements werefound to be invaluable for communicating to thephysician the severity of the episode and theresponse to medications.

In addition to episodic measurements, patients inNew Mexico were asked to monitor PEFR for 2weeks before coming to the clinic. They werecalled and given reminders on fluorescent self-stick notes to remind them to carry out this task.This 2-week monitoring period gave a betterpicture of the patients’ asthma than one measureof lung function at the clinic.

New Mexico presented pulmonary function testnumbers to patients like grades in school toindicate what was a “good,” “bad,” or passingnumber (e.g., 60 percent=F, 80 percent=B).Flow volume loops were shown to patients so theycould have a visual indication of their asthmaseverity. The Texas researchers used a simplerapproach and told patients that a FEV

1 under

80 percent is a sign of trouble.

Clinicians in the New Mexico project performedspirometry on every child 6 years of age or older

15

Ways to help parents continue to give the medica-tions include frequent contact (e.g., telephonecalls, home visits), objective monitoring (PEFRand symptom diary), and repetition of educationalmessages. In St. Louis, for example, trainedneighborhood residents maintained contact withparents to encourage ongoing adherence andregular care, remind them of program events andopportunities, and provide support and assistancein dealing with asthma and other problems intheir lives.

In the New York program, children on dailymedication were instructed to maintain theprogram for a minimum of 2 months and prefer-ably until the child had no chest complicationswhen he or she had had several colds.

Patients who work to manage their asthmashould be recognized for their efforts.

In New Mexico, graduation certificates forcompleting the 2-year project were given topatients to affirm their progress in managing theirasthma. The St. Louis project included a gradua-tion program with certificates and T-shirts bearingthe program logo on the last day of asthmasummer camp.

Strategies to maximize the efficiency of asthmaeducation and care are beneficial for primarycare physicians and clinics.

In some of the New York study clinics, half-daysessions devoted to patients with asthma helpedthe staff treat asthma more effectively and effi-ciently. This approach also enabled educationalsessions to be conducted for families and othercaregivers using the Open Airways program.

Primary care physicians in rural New Mexico alsoindicated that their staff was too busy to conductlengthy patient education. The physicians wanteda few important points that their staff couldemphasize and reinforce, perhaps in a flash-cardformat.

Rather than providing extensive education,emergency care providers may review selectedkey points and encourage patients to obtainregular outpatient care.

Researchers in St. Louis recognized that timeconstraints on personnel and the understandabledistress of many patients and families can blockeffective asthma education in the emergencydepartment. A solution to this problem was asimple plan known as the “1...2...3 Plan” (seeappendix III). Thisplan lists specificsteps for takingpreventive andrescue medication,steps for respond-ing to warningsigns of an asthmaepisode, andencouragement tosecure an appoint-ment for regularfollowup care within 72 hours of the emergencydepartment visit.

EDUCATION FOR HEALTH PROFESSIONALS

Educational interventions for health careproviders should be based on input from theproviders.

The Texas researchers obtained input from thetargeted physicians on their perceived needs andpreferred instructional methods through severalfocus groups. Investigators solicited input andmodified the program on an ongoing basis asparticipants advanced in knowledge and as newparticipants entered the program.

The New York investigators assessed the Bureauof Child Health clinic staff’s perceptions aboutthe need for changes in asthma care and thefeasibility of implementing changes. The re-searchers found that many providers viewed


Rather than providingextensive education,

emergency care providersmay review selected key

points and encouragepatients to obtain regular

outpatient care.

16


asthma as an episodic disease requiring treatmentof symptoms as they occurred. The providerswere reluctant to accept the concept of asthma asa chronic disease that requires preventive care,and they feared that doing so would result inunmanageable increases in patient load. To

respond to theseconcerns, theinvestigatorsfocused on strate-gies to (1) help stafflink the goals ofcontinuing care forasthma to thebureau’s preventive

care mission; (2) help staff identify and resolveorganizational problems that blocked acceptanceof the new approach to asthma care; and (3)involve all staff members in planning how toimplement the program so that the staff of eachclinic would learn to function as a team anddevelop a sense of ownership of the asthmaprogram.

The best approach to training clinicians totreat asthma involves building skills inassessment and management, providing anenvironment that supports implementation ofcurrent recommendations (e.g., access to peakflow meters and to personnel who can assist intraining families), and encouraging cliniciansto address one or two aspects of self-management at each visit, rather thanattempting to change behaviors all at once.User-friendly, convenient educationapproaches can also help. Traditionalcontinuing medical education (CME) lecturesare not enough to modify health careproviders’ behaviors.

The Texas project’s educational intervention forphysicians included three hands-on seminars thatcovered the following content areas: spirometryand peak flow, stepwise use of medications, andsymptom recognition and elimination of triggers.

During the spirometry and peak flow session,physicians actually performed spirometry andthen interpreted the results. They calculatedtheir own predicted peak flow value and had anopportunity to practice using peak flow meters.During the medications seminar, they had anopportunity to observe and then practice thecorrect technique for using a metered-doseinhaler, and they acquired experience handlingseveral different spacer devices.

An effective computer-based education programwas developed in the Texas project; however, inconducting their physician education program,the Texas researchers found that it was essentialto schedule specific time blocks for physicians toreceive instruction. Physicians were unlikely tocomplete certain aspects of the program (such ascomputer-based instruction) independently unlessspecific times had been scheduled for them to doso.

New Mexico researchers believed one of theirmost effective strategies for physician educationwas collaborative evaluation of patients byprimary care physicians and program specialists.This was done in the office of the private practi-tioners because these physicians were too busy togo to the researchers’ Albuquerque clinic to seepatients and could not afford a whole day out oftheir offices. Older as well as younger physicianswere willing to participate and adapt theirasthma management practices.

It is also important to provide education for morethan just physicians; other clinical and office staffmust also know what to emphasize duringasthma education sessions and can reinforce therecommendations and instructions to families.New York investigators found that patients weresometimes more comfortable discussing problemsand seeking help from nonprofessional clinic staff(e.g., entry clerks or lab technicians) than theywere with doctors and nurses. For this reason,the entire clinic staff took part in the interventiontraining.

Traditional continuingmedical education (CME)

lectures are not enough tomodify health care

providers’ behaviors.

17

Simplified and convenient prompts andreference material (e.g., flow charts) areparticularly useful educational tools for healthcare providers.

Physicians targeted in the Texas project indicatedthat pocket cards and hands-on seminars werethe most beneficial components of their asthmaeducation. The Washington, D.C./Baltimoreinvestigators found tear-out action plans andmedication sheets to be useful resources forpractitioners.

Just providing the NAEPP’s Expert Panel Report:Guidelines for the Diagnosis and Management ofAsthma is not enough. The guidelines need to besimplified and instruction provided (for example,as in the flow sheets in the NHLBI/WHO work-shop practical guide; see appendix III).

Physicians may not be receptive to usingforms to document patients’ visits.

Although printed history and physical examina-tion forms were helpful in the New Mexicoproject (see appendix III), the New York investi-gators found that medical record forms theydevised to guide physicians through the processof initial and continuing visits for asthma werenot enthusiastically received. Most of the physi-cians preferred to use a blank form for recordingnotes.

Health care professionals should be recruitedand trained to teach other providers aboutasthma management.

Clinic staff members who had received trainingfrom the New York program staff were able to doan excellent job of training the staff of otherclinics in the Bureau of Child Health. Clinic staffmembers who served as trainers needed consider-able support initially from the investigators inlearning to deliver the program. They weresomewhat anxious about being able to success-

fully carry out the training program with theirpeers, and they did not initially realize the degreeof teamwork andrehearsal necessaryto carry out theprogram. Withexperience, how-ever, the trainedstaff membersbecame confidentand skilled educa-tors, and theirteaching of the program was received enthusiasti-cally.

Incentives, including the provision of CMEcredits for physicians, were helpful in gettingphysicians to participate in the New York pro-gram. St. Louis gave CME credits for physiciansand continuing education units for nurses whoattended their yearly asthma conference.

Recognition should be provided to health careprofessionals and other workers who strive toimprove asthma care.

In New York, a graduation ceremony at whichsenior members of the health department werepresent was held to award individual andclinicwide certificates for completion of theprogram. This helped to increase morale andreinforce active participation by the staff.

Interventions to improve the delivery ofasthma care in health systems are enhanced bystrong administrative and supervisory staffsupport.

The presence of influential administrative andsupervisory staff at all of the intervention sessionsin the New York program emphasized theimportance of the program to the Bureau ofChild Health and increased the clinic staffmembers’ motivation to initiate the program intheir clinics. Key staff members were instrumen-


Interventions to improvethe delivery of asthma care

in health systems areenhanced by strongadministrative and

supervisory staff support.

18


tal in helping clinicians link the goals of continu-ing care for asthma to the bureau’s mission ofproviding preventive pediatric care. Havingadministrators present also helped resolve organi-zational issues that blocked acceptance of the newapproach to asthma care, such as concerns aboutkeeping up with scheduled appointments andcoping with large numbers of new patients.

The Texas investigators found that starting theirphysician education program with supervisingfaculty and fellows allowed a consistent approachto patient management at all provider levels andenabled consistent information and feedback tobe given to residents in clinics.

A community health professionals advisoryboard can be useful in promoting continuityof effective asthma care.

The St. Louis investigators recruited a group ofleading neighborhood health care providers tofunction as a Physicians’ Advisory Board. Theboard members met regularly to identify prob-lems and ways to improve the provision ofasthma care within specific neighborhoods. Theyreviewed data generated by the research project

as a nonthreatening, nonjudgmental approach toidentifying problems for discussions. Aphysician’s guide, which included patient educa-tional materials for use in outpatient settings, wasdeveloped with input from the Advisory Boardand based on educational materials from theChildhood Asthma Management Program. Inaddition, an annual joint community professionalasthma conference, organized by the board incollaboration with program staff, volunteers, andchildren with asthma and their parents, providededucation for physicians and other professionals,as well as parents, children, and neighborhoodvolunteers and staff.

References

National Heart, Lung, and Blood Institute,National Asthma Education Program. ExpertPanel Report: Guidelines for the Diagnosis andManagement 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 PracticalGuide for Public Health Officials and Health CareProfessionals. Bethesda, MD, in press.

19

The investigators from the five projects identifiedkey points that would be useful in planningintervention research studies for minority popula-tions. Practical tips for developing demonstrationand education research projects are describedbelow.

PILOT STUDIES

Prior to beginning an intervention, it isadvisable to conduct a needs assessment (e.g.,focus groups) and pilot studies to addressquestions related to recruitment strategies,assessment measures, design of theintervention, and followup strategies. Dealingwith these issues in advance can save time andresources during the intervention.

The Washington, D.C./Baltimore researcherspiloted all phases of their project, includingquestionnaires, curricula, and forms used by thecommunity health workers. Investing time andattention in a needs assessment and pilot phase,for example, allowed the A+ Asthma Club to bedesigned from the beginning with considerationfor logistical constraints (e.g., not having chalkboards or other equipment in the classroom).The needs assessment also indicated that separatesessions for children in the upper and lowerelementary grades were necessary. Focus groupsconfirmed the need to replace traditional asthmaeducation jargon with vocabulary more appropri-ate to the intended audience.

In pilot studies, the New York investigatorsfound that a traditional continuing medicaleducation program in current concepts of asthmatherapy and patient education was not effectiveby itself in changing clinic staff health behavior.The pilot studies identified several barriers to theimplementation of the program: staff concerns(e.g., fears that they would be overwhelmed bythe influx of patients with asthma), mispercep-tions about the pathogenesis and treatment ofasthma, difficulties in accommodating thepreventive aspects of asthma control, and deficitsin the ability to communicate effectively withpatients and families. The intervention was thenrevised to involve all staff members in planninghow to implement the intervention and to usetechniques that fostered teamwork among theindividual clinic staff members.

The New Mexico project pilot-tested severaldifferent education programs, which was helpfulin selecting an appropriate format. Data collec-tion instruments were also extensively pilot-tested and refined.

Texas investigators had the opportunity to testmethods of identifying and recruiting eligiblestudy participants during a previous study ofmorbidity in Hispanic children with asthma.They found that patient registries could be usedto identify potentially eligible subjects and thatfurther screening and recruitment could be doneby telephone or in face to face interviews. Inaddition, it was found that several telephonecontact numbers were needed to be able to trackparticipants over time.

PRACTICAL INSIGHTS:RESEARCH NOTES

20


KEY LESSONS LEARNED

Participant Recruitment/Retention

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

■ Screening questionnaires are effective recruitment tools.

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

Questionnaires and Assessment Measures

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

■ 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, andfamily 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 tailoredintervention.

■ 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 identifyingand recruiting participants. (See table 1.)

Screening questionnaires can be an effectivetool for identification and recruitment ofparticipants.

The New York investigators developed a screen-ing questionnaire that was used at the Bureau ofChild Health clinics to identify children withasthma (see appendix III). The reception clerksor other workers at the clinics were taught tohand out the questionnaire at specific age inter-vals 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 constraintsupon researchers; flexibilityis required

Rationale

■ Concentrated source of potentialparticipants

■ Broad-based sample of children■ “Captive audience” for direct

intervention■ Generally receptive to asthma

education interventions

Hospital-Affiliated Clinicsand Inpatient Facilities

■ Useful for reaching minority patients■ Participants can be identified

through easily accessible patientregistries

■ Diagnosis and studyeligibility must be verified

■ Patient contact lists may notbe accurate

Community Physicians ■ Potentially important source ofpatient referrals

■ Physicians are not alwayswilling to participate ininterventions1

Emergency Departments ■ Contacting and recruitingpatients with social andeconomic problems may bechallenging2

■ Useful for identifying and reachingpatients with poorly controlledasthma, minority patients, low-income patients, and those withouta primary source of care

State Agencies ■ May impose some constraintsupon researchers3

■ Useful resource for identifying studyparticipants

Public Health Clinics ■ Source of patients with undiagnosedasthma and patients without aregular source of primary care

■ Interventions can bring about broadchanges in medical practices

■ Budgetary constraints andlocal bureaucratic changeshave the potential to createroadblocks for researchers

1 Community physicians initially resisted participating in the New Mexico program because they did not completelyunderstand the program and feared losing patients to it. This slowed recruitment considerably. Concerns about time andspace limitations, confidentiality issues, and possible chart audits are other potential sources of physicians’ reluctance to referpatients for research.

2 Researchers in the St. Louis project were able to contact 74 percent of patients with asthma identified from a list of childrenadmitted to St. Louis Children’s Hospital Emergency Department. The children’s parents or guardians were contacted bytelephone and/or letter with followup by telephone to determine their interest in participating in the study. Several callbacksper family were required to recruit each patient. Changes in phone numbers and incorrect phone numbers also reduced thecontact rate. However, once contacted, of those eligible, 93 percent agreed to participate in the intervention. Of the first 103children 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 chronicmedical conditions. This proved a viable method of identifying patients, but budgetary considerations limited uniform andtimely enrollment in some areas of the State. In addition, the methodology of the study was influenced to some degree by theinvolvement with Children’s Medical Services.

22


questionnaire, which would provide the physicianwith some history and enough information toinitiate an inquiry about asthma symptoms. Allclinic personnel also received basic training aboutasthma. They were encouraged to feel free togive a screening form at any time if they sus-pected a child might have asthma and to commu-nicate their observations to the physician eitherverbally or by writing observed symptoms on thescreening form. A copy of each screening formwas set aside and collected every 4 to 6 weeks,tallied, and a report of findings sent to theregional supervisors of the clinics. Regionalsupervisors could use these data to monitorparticipation in the asthma program.

Based on information from the screening formand subsequent questions to the family, physi-cians who suspected that a child might haveasthma then would invite the family to enter theasthma program at the clinic in which the childordinarily received care. The proportion ofpatients with asthma seen in the targeted BCHclinics nearly tripled by the second followup yearas a result of the questionnaire.

Face-to-face contact can be an importantaspect of recruitment.

The Texas investigators felt that a face-to-face,one-on-one approach with bilingual staff mem-bers who understood Hispanic culture was acrucial component for successful recruitment ofHispanic participants.

Obtaining consent from potential participantscan be time consuming and challenging. Theuse of material incentives may improve theefficiency of recruitment.

In the Washington, D.C./Baltimore project,project descriptions and consent forms weremailed to parents of children identified as poten-tial participants. In many cases, multiple mail-ings and followup telephone calls were needed

Incentives can facilitate participant recruitment.

before the consent forms were returned. Atremendous amount of time was invested inobtaining consent forms.

In St. Louis, evaluation interviews were bytelephone, but signatures were required formedical chart release forms, and Social Securitynumbers were required for payment after comple-tion of interviews. These items were on a singleform, and most people returned release formsquickly since payment was contingent uponreturning them.

Incentives that were used with success in the fiveprojects included:

• Monetary reimbursements (for example, $15for baseline and final interviews and $10 forquarterly followup interviews)

• Bus tokens, cab vouchers, travel money

• Toys, photographs (taken at first visit andgiven at followup visit), tote bags, T-shirts,refrigerator magnets, key chains, bumperstickers, asthma watches

• Strategies to make the educational experiencefun (such as calling a program a “club”)

• Free meals

• Educational materials, training, free medicalcare and medication, peak flow meters,mattress covers

23

PATIENT/PARTICIPANT RETENTION

Factors that can help maintain patients’participation include an honest, sensitive, andunderstanding personal relationship withstaff; convenience; incentives; and pleasantand rewarding experiences at the followupvisits. In addition, obtaining several contactnames and telephone numbers at enrollmentincreases the likelihood of finding participantswho do not come to appointments. The useof a professional survey research firm also canbe effective in following up with participants.

The Texas investigators found that it was impor-tant to personalize interactions with patients’families by learning the names of family membersand showing genuine concern for them, oftenmerely by inquiring about them. Staff memberstook the time tochat with families,even if they did nothave an appoint-ment, and madepositive commentsabout the child andthe family when-ever possible. Itwas important toconstantly encour-age families and tobe patient withthem. Bilingualstaff members whowere competent indealing with Hispanic families also enhancedcommunication and facilitated retention efforts inthe Texas project.

The St. Louis staff also strove to establish rapportwith patients by being knowledgeable aboutasthma and pediatrics, having an understandingof urban living and its effects on children andtheir parents or guardians, using simple andappropriate levels of communication, and work-ing hard to be perceived as honest and trustwor-

It is crucial to understand the hierarchy of agiven organization and to know which keyplayers, at all organizational levels, control andfacilitate access to study participants andrecords.

With some organizations, permission to accessparticipants must be granted by individuals inhigh administrative positions (a so-called “top-down” approach). With others, people with lesserpositions may be instrumental in accessing partici-pants (“bottom-up”). For example, school nursesand/or chapter I workers (in schools receivingFederal funding) can be avenues for identifyingchildren with asthma. Secretaries in schools andparent liaisons are also potential sources.

In order to obtain school records of studentattendance, Texas investigators had to contact andnegotiate with 12 different independent schooldistricts, as well as several private schools. Eachdistrict had specific requirements for approval ofresearch studies and for the manner in which datacould be requested and obtained. In general,schools were very receptive to efforts to improvethe life of children with asthma but were con-cerned that the research study would requireadditional effort and time to be expended by theirstaff members. Only one private school refused toprovide attendance data after consent had beenobtained from the subject’s parents.

The Washington, D.C./Baltimore project investedover 9 months in contacting officials in the schoolsystem. Superintendents, research reviewers,health professionals, and principals of schools wereamong those contacted for permission to conductthe research.

In New York, the leadership at the department ofhealth was aware that many children with asthmawithin the families being followed by their clinicswere going to emergency departments for crisiscare rather than receiving preventive care at theclinics. Because the BCH clinics were centrallyadministered, the leadership could and did facili-tate patient recruitment into the program.

Factors that can helpmaintain patients’

participation include anhonest, sensitive, and

understanding personalrelationship with staff;

convenience; incentives;and pleasant and

rewarding experiences atthe followup visits.


24


patients interviewed during the baseline year.New Mexico researchers also found disconnectedtelephones and returned mail a frequent andtime-consuming problem. Children’s MedicalServices caseworkers were helpful in trackingpatients.

The St. Louis investigators contacted those whosetelephones had been disconnected by sendingpostcards requesting that participants call fortheir quarterly interview. The frequency of theinterviews helped the researchers maintaincurrent addresses and telephone numbers.Periodic checking of hospital records also pro-vided updated information for some participants.

The Washington, D.C./Baltimore investigatorsused a professional survey firm to conducttelephone interviews. Although the initialexpense was high (between $50 and $70 perfollowup), the strategy was cost-effective in thelong term. Four hundred participants could beinterviewed within 3 to 4 weeks, with an 84 per-cent completion rate. In addition, the qualityand completeness of the survey were ensuredthrough internal quality control checks at thesurvey firm.

Participants who could not be reached by tele-phone in the Washington, D.C./ Baltimoreproject were sent a note with a toll-free telephonenumber and the promise of $20 for calling in forfollowup.

STAFFING

(See public health notes section for a full discus-sion of staffing.)

QUESTIONNAIRES AND ASSESSMENT

MEASURES

Issues related to language, literacy, culture,and conceptual relevance should beconsidered when developing and selectingquestionnaires and other assessments.

Honest, sensitive communication with patients can helpretain them in a study.

thy. Both the interviewers and educational staffemphasized the confidentiality of information andthat they were not “checking up on” or interestedin “reporting” parents. Also, a $10 incentive wasoffered for each quarterly interview. Manyparticipants looked forward to the quarterlyinterviews (the response rate was 85 percent) andeven contacted staff members between interviewsfor information or to report developments in theirchildren’s asthma.

The New Mexico investigators initially tried toconduct their research program exclusivelythrough a clinic in Albuquerque. The rurallylocated patients found travelling to Albuquerquefor followup visits to be the most difficult part ofthe program. Once outreach clinics were estab-lished around the State in the families’ owncommunities, virtually 100 percent of patientskept their scheduled appointments. The re-searchers tried to provide a comfortable settingwith snacks and beverages. Although thefamilies appreciated this gesture, it was difficultto implement on a continual basis because ofspace and setting limitations.

Changing telephone numbers and interruptionsin telephone service for low-income participantscan lead to challenges in followup. This situationresulted in the New York investigators’ obtainingfollowup interviews for only 50 percent of

PHOTOGRAPH NOT AVAILABLE

25

Not only word choice but phrasing and formatcan affect the ability of a participant to under-stand a questionnaire and its relevance. In theWashington, D.C./Baltimore project, for ex-ample, respondents were confused by questionsregarding the likelihood that a particular situa-tion would occur (e.g., 100 percent likely, 50 per-cent likely). Avoiding jargon was essential. Forexample, the phrase “at home” was used insteadof “at your home” and the “room where yousleep” instead of “your bedroom.” In the NewMexico project, participants did not understandthe relevance of a Parenting Stress Index Ques-tionnaire and consequently were reluctant tocomplete it.

Outcome measures for asthma interventionsshould include, in addition to the usualmeasures, assessments of quality of life, socialsupport, and family functioning.

Measures of social support in the communitywere shown to be important predictors of healthcare utilization in some of the projects. In St.Louis, for example, parents were asked to esti-mate the number of family members and friendsthey “feel at ease with and can talk to aboutpersonal matters” and “can call on when you needa favor.” Those who indicated relatively fewconfidants—that is, those who were quite sociallyisolated—reported that their children had morefrequent asthma symptoms and emergency visits.

In the Texas study, several standardized question-naires as well as specific questions developed bythe investigators were used to assess a broadrange of outcomes related to quality of life,morbidity, and the impact of the illness on thechild’s family.

(Detailed information about asthma outcomemeasures is available in the National Heart,Lung, and Blood Institute asthma outcomemeasures workshop report [National Heart,Lung, and Blood Institute, 1994].)

It is important to collect information aboutpatterns of actual medication use and to assessself-medication technique.

Recording prescribed drug regimens is notsufficient to gauge medication use. Assessmentsof how participants in the Washington, D.C./Baltimore project recorded medication useindicated that bronchodilators prescribed to beused as needed were, in some cases, being takendaily, whereas anti-inflammatories, which had noimmediate benefit, were not necessarily takendaily 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, thattheir children have asthma may not see a need forintervention and may, therefore, keep theirchildren out of a potentially beneficial study.Others may befrightened by theterm. Broadeligibility defini-tions, such asrecurrent cough orwheezing, re-stricted activity, orawakening atnight, can maxi-mize recruitment of eligible participants. In NewYork, the use of the screening questionnaire washelpful to the clinicians in determining whichpatients needed followup appointments to discussthe problems of asthma more fully with parentsor caregivers.

There may be a poor correlation betweenmorbidity data collected through the studyand data from other sources. In some cases, itmay be difficult to determine which data arecorrect.

It is important to collectinformation about patterns

of actual medication useand to assess self-

medication technique.


26


In the Washington, D.C./Baltimore, St. Louis,and Texas projects, parental reports of emergencydepartment use were higher than those indicatedin hospital records. Whether this disparity wasbecause of poor parental recall or inaccuratehospital records could not be determined. In St.Louis, concurrence of parental recall and medicalcharts for outpatient physician visits was particu-larly low.

Obtaining data from school on days absentdue to asthma is challenging.

The investigators’ attempts to obtain this infor-mation were unsuccessful. Many schools wereable to provide data on the total number of daysabsent, but not a total breakdown by the reasonfor the absence.

Objective measures of lung function should beused only after weighing the potential costs,including burden to patients, against thepotential benefits of the assessment. The ageof the patients and their ability to performtests of lung function also are importantfactors to consider.

Basing patient recruitment on morbidity data(frequency of symptoms, intensity ofsymptoms, and frequency of urgent care visitsand hospitalizations) may be a preferablealternative to severity measures, which aremore difficult to define.

When translating assessment instrumentsfrom English to other languages, reliabilityand validity must be documented again in theresearch population.

DESIGN AND ASSESSMENT OF

INTERVENTION DELIVERY

Quality control and monitoring of programimplementation according to standards areimportant and can be conducted in a varietyof ways.

In the Washington, D.C./Baltimore project,observers were used to monitor the quality ofinstructors. The researchers also found it helpfulto obtain feedback directly after an educationalsession with children to ensure that incorrectinformation was not being taught.

The New York project developed a trainingmanual to help standardize the delivery of theprogram by both the investigators and the BCHstaff members who were trained to deliver theprogram in the second phase of the study. Thestrategy resulted in a stronger, more consistentintervention. The program delivery team mem-bers monitored each other’s performance duringeach session, enabling the team to make correc-tions as needed during the session to respond toparticular needs and to stick to the overall plan.

In the St. Louis program, staff members observedneighborhood residents implementing curricula.Frequent in-service training and review ofprogram progress and problems served to encour-age instruction according to standards.

A steering committee can be useful inimproving study design and execution.

The New York investigators created a steeringcommittee that included the investigators fromColumbia University, the Bureau of Child Health,and the Medical and Health Research Associationof New York, Inc., as well as a supervisor fromeach of BCH’s five regional divisions. Periodic(e.g., monthly) meetings of representatives fromall parts of the program were useful to recognizeproblems early and to work out solutions quickly.A nurse-educator made monthly visits to eachclinic to talk with the staff, reinforce program

27

messages, and troubleshoot. She brought herfindings to the steering committee, which becamethe principal decisionmaking body for the study.Decisions were made as to how the BCH supervi-sors could more effectively reinforce the interven-tion in the field based on the information broughtto the committee by the nurse-educator, theBCH supervisors, or administrators and oninformation from database management reports.

In St. Louis, a “nuts ‘n bolts” committee ofresearchers and community staff members,including field workers and supervisors, mettwice a month to discuss program objectives,evaluation of outcomes, and any items that wouldenhance the research study and communityprograms. The emphasis of these meetings wasgenerally on programmatic rather than researchissues, but they served as a good conduit toensure that field staff members were informed ofand understood research needs, to ensure thatfield staff members’ observations were included indiscussion of research issues and that researchdecisions were not made without staff involve-ment, and to coordinate field-based researchactivities (e.g., surveys of schools in study neigh-borhoods). These meetings engendered a sense ofcomplementarity between research and practice.Field staff members understood and cooperatedwith research needs because they were able tocontribute to research development.

To establish a sense of community ownershipin a project and increase its effectiveness, anontraditional intervention strategy may benecessary. For example, it may not be possibleto maintain a pure control group.

In the St. Louis study, neighborhoods wereassigned to control and intervention groups.All residents of intervention neighborhoods wereeligible for the program; residents of controlneighborhoods were not. Nevertheless, somecontamination between intervention and controlgroups occurred. Mass media reached all neigh-

borhoods. Many participants moved from oneneighborhood to another. Also, almost allphysicians who cared for study subjects also caredfor controls, making the increased awareness ofasthma and the importance of regular careavailable for both groups of children. In addi-tion, offices of all physicians were visited atregular intervals for review of charts of studysubjects and controls, increasing awareness ofasthma among the office staffs.

These contaminations could reduce differencesfound between residents of study and controlneighborhoods. Through quarterly interviewswith caregivers, however, researchers weregenerally able totrack cases,identify those whomoved from astudy to controlneighborhood, andadjust analysesaccordingly.

When communi-ties are reluctantto use control groups because no one wants to beleft out, staging the intervention so that somegroups get the intervention before others is onestrategy for getting agreement on the use ofcontrol groups. In this case, there is the addedbenefit of having results for the control groupsbefore and after they receive the intervention.The New York project did this, enabling all 40clinics in BCH to receive training withoutcompromising the original study design.

When evaluating asthma in minorities and theeffectiveness of interventions, it may behelpful to consider the following areas:

Process Measures

• Is the prevalence rate in the treatment site lessthan the actual or expected communityprevalence rate? If so, screening should beconducted to identify new cases.

To establish a sense ofcommunity ownership in a

project and increase itseffectiveness, a

nontraditional interventionstrategy may be necessary.


28


• Do the families receive continuing, preventivecare? Do they make scheduled visits forpreventive asthma care as well as sick visits?Do they have the skills and resources neededto carry out the therapeutic plan? Do familiesperceive the physician as a partner?

• Have physicians prescribed appropriatetherapy? Are patients with moderate orfrequent symptoms receiving daily anti-inflammatory therapy? Are the patients orfamilies given a written management plan thatallows them to make some adjustments ontheir own according to changing circum-stances, such as onset of a cold?

• Have families been educated about asthma?Do they accept the diagnosis, and are theyable to carry out the management plan?

• Have members of the community learned thatasthma is serious? That those with asthma canlead full and active lives? That when symp-toms occur, they should be dealt with? Andthat when symptoms persist, help should besought?

Final Outcome

• Is asthma well controlled in children and arethey fully active? Are they missing fewer daysfrom school? Are days with limited activity ornights with sleep disturbance infrequent? Areemergency visits and hospitalizations rare?Has the impact of the illness on family lifebeen minimized?

Evaluations of asthma management programsshould be multidimensional.

Several characteristics of asthma suggest the useof multiple indicators to evaluate asthma man-agement programs. First, there is no “gold

standard” measure of asthma management.Symptoms, lung function, avoidance of unneces-sary acute or emergency care, and general qualityof life are all pertinent. Second, individualmeasures may be ambiguous. Frequent symp-toms may represent asthma that is difficult tocontrol or failure to follow regimens that wouldbe adequate to control mild asthma. Reports ofsymptoms are also subject to a number of report-ing biases (such as seeking to report sociallyappropriate patterns or seeking to please theinterviewer). Although increases in reports ofsymptoms may represent increased morbidity,such increases among those who have previouslyignored symptoms may reflect increased sensitiv-ity to symptoms as a beneficial result of asthmaeducation.

The significance of ED visits may also be ambigu-ous. Although they may represent acute symp-toms requiring urgent or emergency care, somelow-income patients may use the emergencydepartment as a source of primary care because ofbarriers to regular outpatient care. On the otherhand, waiting too long to seek emergency carehas also been implicated in asthma deaths. TheSt. Louis researchers reviewed records of emer-gency visits to confirm the diagnosis of asthmaand to note the treatment used for the asthma.Use of nebulized bronchodilators during the visitand prescription of prednisone at discharge weretaken to indicate acute asthma, as opposed to useof the emergency department as a source ofregular care or to refill prescriptions or othernonemergent treatment.

All of these factors suggest that a number ofmeasures should be used as outcomes for asthmamanagement research. The use of a number ofmeasures represents, in turn, the multidimen-sional nature of asthma.

29

DATA ANALYSIS AND MISSING DATA

Power analyses should take into considerationthe likelihood of missing data, particularlywhen evaluating an intervention with multiplefollowup time points.

In New Mexico, the rural nature of the State anddistances that patients had to travel for followupcare caused otherwise compliant patients to missone or more followup visits in Albuquerque. Thissituation resulted in the belief that it is a goodidea for power to be conservative and therefore tooverestimate the sample size needed to detect adesired effect. In addition, data analysis methodsshould include these cases that are missinginformation for one or more time points (forexample, random effects modelling). “Complete-case only” analyses can misrepresent interventioneffect sizes.

Power calculations for the Texas group werebased on a potential dropout rate of 25 percent.This is close to the dropout rate observed byother investigators in longitudinal studies ofpatient interventions.

In the New York project, the researchers esti-mated 20 percent loss to followup in the yearfollowing the program (for family interviews), butthe actual rate was 50 percent, which reduced theability to detect differences between the programand control group parents.

References

National Heart, Lung, and Blood Institute.Supplement: Asthma outcome measures: work-shop on asthma outcome measures for researchstudies. Am J Respir Crit Care Med 149(2 Pt 2):S1-S90, 1994.


30


31

Public health activities were identified as thoseattempting to improve the management ofasthma in groups of people in communities and

schools. This section offers suggestions forplanning and implementing asthma interventionsfrom a public health perspective.

PRACTICAL INSIGHTS:PUBLIC HEALTH NOTES

KEY LESSONS LEARNED

Planning an Intervention

■ Interventions can be strengthened through partnerships between public and privateorganizations.

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

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

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

■ Factors that affect health care providers’ willingness to adopt new practices should berecognized 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 ofmaterials, 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


PLANNING PHASE

Viable partnerships can be establishedbetween public and private organizations.

Developing partnerships was an importantcomponent in three of the asthma interventionprojects. In each case, the partnerships broughttogether resources that are essential in managingand controlling asthma.

In New York, the department of health, whichoperated more than 40 primary care clinics foryoung children, formed an alliance with a medicalschool that had expertise in clinical care andhealth education to create a model that providedcontinuing state-of-the-art primary care tochildren with asthma.

In New Mexico, the State-funded Children’sMedical Services (which provides care for childrenwith serious health problems) combined itsservices with expertise from a university-basedmedical center to improve clinical care and healtheducation for underserved rural minorities.

In St. Louis, a private, not-for-profit communityorganization formed an alliance with a universitymedical center that has clinical services torespond to needs identified in the community. InWashington, D.C., and Baltimore, a partnershipwith the school systems was created. Schoolsystems tend to be very concerned with thehealth of their children (as well as test scores andabsenteeism) and are usually willing to enter intoa partnership with a reputable university orresearch institution providing the schools gainsomething from this partnership.

A “lead agency” approach to program gover-nance is effective in engaging neighborhoodresidents to plan and implement asthmaeducation and management programs.

The St. Louis project used a local, experiencedsettlement house and social service and healthagency (Grace Hill Neighborhood Services) to

organize the planning and direction of its pro-gram. Neighborhood Wellness Councils, com-posed of neighborhood residents and Grace Hillclientele, were organized in several neighbor-hoods to conduct program planning, recruitneighborhood residents to staff positions withinthe program, and recruit children and caregiversinto the program. The lead agency approachtakes advantage of the agency’s existing links tothe community and program credibility. How-ever, working with a lead agency also may bringwith it the agency’s limitations. For instance, ifthe agency has not already established links toimportant groups, the new program may havetrouble reaching those groups.

Interventions should be based on an under-standing of the medical systems involved andhow children and their families interact withthe systems.

In St. Louis, it was found that most familiesreceived only episodic, acute care and had re-ceived little information about treating asthma asa chronic illness. The program staff needed tohelp families identify appropriate sources of carein addition to addressing other problems inasthma management.

The New York program addressed the problem ofoverreliance on crisis care by emphasizing thatregular preventive care at BCH could reducefamilies’ need for emergency care. Families wereprovided with an asthma information card (seeappendix III) that could be shown to health careproviders (e.g., hospital emergency departmentstaff, clinic staff, or private physicians) if thechildren needed to be seen when the child healthclinics were closed. The card includes informa-tion about the child’s medications and the nameof the primary care physician and indicates thatthe child was enrolled in a program for preventiveasthma care under the guidelines established bythe NHLBI.

33

Intended audiences should be involved in thedevelopment of educational programs.

Focus groups consisting of children with asthmaand their parents were used in the Texas interven-tion to obtain feedback on educational videotapesas they were developed. Flip-chart materials alsowere pilot-tested with families. The focus groupsand pilot-testing identified several minor prob-lems, including specific words that were noteasily understood and additional content areasthat families felt were important.

In St. Louis, a number of standard asthmaeducation programs were adopted and imple-mented through a community organizationapproach that involved tailoring and revision ofprograms by the intended audience. Althoughsome control over program content was necessar-ily lost as a result of this tailoring, the researchersfelt that the time and resources necessary torevalidate the program curricula in each newmodification would probably reduce the enthusi-asm of the community for the program.

The Washington, D.C./Baltimore researchersdeveloped and named a six-session curriculum forchildren based on their input. The program wascalled the A+ Asthma Club because elementaryschool children prefer the idea of a club ratherthan a class. Creating a club atmosphere forchildren in small groups gave each child time totalk and participate.

IMPLEMENTATION PHASE

Educational Content and Format

Interventions should address attitudes,beliefs, behaviors, and skills of the intendedgroup, not just knowledge. In developingmaterials, consideration should be given toethnic and cultural appropriateness, readinglevel, and language barriers.

The St. Louis group has followed a series of stepsto promote quality control in adapting estab-

lished educational curricula to the low-income,African American neighborhood setting. (1) Nocurricula are considered for adoption unless theyhave been validated in other studies. (2) Prior todeveloping education materials, audience input issecured, either through ongoing consideration ofprogram progress and emerging needs amongwellness councils and staff or through explicitfocus groups of children, caregivers, and otherneighborhood residents. (3) Focus group findingsor staff andvolunteer discus-sions are thenreviewed by staffand wellnesscouncils. Thisleads to a decisionto proceed withcurricula develop-ment and identification of available materials. (4)Agency and university staff and wellness councilmembers then work to develop the curriculumpiece, following established educational proce-dures of identification of key curricula concepts,attention to reading level and ease of comprehen-sion (limited number of themes, simple vocabu-lary, short sentence length, commonly understoodsymbols, emphasis on illustrations, easy tocomprehend headings and format, short linewidth, adequate type size [Doak et al., 1985;Kirsch and Jungblut, 1986; Kozol, 1985;Redman, 1984]), and consideration of audienceknowledge and attitudes. (5) If the curriculumpiece is planned for continued or widespread use,pilot tests are conducted with the intendedaudience in the setting in which they will beused. Even if not explicitly pilot-tested, materialsare re-reviewed by wellness councils and otherstaff and volunteers before final production.

The Washington, D.C./Baltimore researchersemphasized that written material should besupplemented with personal instruction oraudiovisual aids. New material should be relatedto old. Selecting readable print size, using bold

PRACTICAL INSIGHTS: PUBLIC HEALTH NOTES

Intended audiences shouldbe involved in thedevelopment of

educational programs.

34


face type, and using pictures are important.Concepts should be illustrated.

In the Texas project, a bilingual Hispanic nurseeducator worked one-on-one with a child withasthma and his or her parents, conducting eacheducational module in either Spanish or Englishdepending on parent and child preferences. Theone-on-one format was employed to increasediscussion and to allow the nurse educator toindividualize the module to each family’s circum-stances. Educational materials were printed inSpanish and English at a fourth grade compre-hension level. Each lesson was reinforced bycolorfully illustrated flip cards in English andSpanish that visually depicted essential points.Children and adults portrayed on the flip cardswere Hispanic in appearance to enhance identifi-cation value. At the conclusion of each module,families received a take-home pamphlet inEnglish and Spanish outlining key messages.Each point of information on the pamphlet wasreinforced with an illustration to reduce relianceon reading comprehension.

Peer modeling in the Texas project was providedby eight videotapes featuring four Hispanicchildren with severe asthma (two boys and twogirls), ages 6 to 12. These children were shownmanaging their asthma at home, at play, and atschool; discussing in their own words why thesebehaviors have been helpful; and sharing theirfeelings about asthma’s impact on their life andschoolwork. The role model videotapes wereproduced in a documentary format to enhancerealism. The conventional technique of stagingscripted scenes using actors to portray childrenand parents often produces stilted dialogue andcontrived situations that are unappealing tochildren accustomed to sophisticated videoproduction techniques. The on-camera narratorfor the videotapes was a bilingual Hispanicfemale the same age as most of the mothers inthe educational program. The videotapes fea-tured the narrator speaking in Spanish and

Language barriers and cultural appropriateness shouldbe considered in curricula development.

presented interviews with Spanish-speakingparents or, occasionally, an English-speakingparent with a Spanish translation dubbed-over bythe narrator. The language in the Englishvideotapes was handled in a similar manner. Allfour role model children spoke in English on thevideotapes since all children in the Texas projectpreferred English for peer conversation. Interac-tions between children and parents on thevideotapes were presented in Spanish or Englishdepending on the families’ language preferences.

New Mexico selected the Open Airways curricu-lum since it was developed for Hispanic patients.It was condensed into four sessions and updatedto include peak flow monitoring and new medica-tions. The researchers found that families andhealth care providers preferred having onebooklet that accurately covered importantasthma information, as opposed to using a varietyof materials. Step-by-step asthma action plansfor dealing with increased symptoms and lowpeak flow also were extremely helpful to bothfamilies and providers.

The New York intervention with BCH clinic staffused interactive teaching methods that explicitlysought to identify the beliefs, behaviors, andorganizational concerns of the clinic teams andinvolved them in activities to resolve them. Forexample, using a strategy developed by Kurt

35

Lewin called “force field analysis,” clinic teamswere asked to develop a strategy for dealing witha perceived problem and to begin implementingit the next day in their clinic. A discussion of thetheories of health behavior with the clinic teamswas very helpful to the staff in addressing familyunderstanding of asthma and how to work withthese families to control asthma.

Simple messages about asthma can aid publiceducation efforts.

The St. Louis public education program wasbased on three basic messages to encourage andassist children with asthma and their parents toreceive appropriate asthma care: Take asthmaseriously; take asthma medicine for asthmasymptoms; and when symptoms persist orworsen, get help. These messages were based onstudies of asthma deaths that implicated misun-derstanding of basic aspects of asthma care andneglect of asthma medicines. Thus, relativelysimple messages can make a big difference.Simple messages are easily understood, andnonprofessional staff members without extensivetraining can promote them effectively. They canalso be covered in simple promotions that do notrequire extensive time or attention from audi-ences.

Information about local resources should beincorporated into community educationprograms.

Through the course of various educationalactivities in the St. Louis program, it becameapparent that caregivers were frustrated over howto tap community resources to get the care theyneeded for their children’s asthma. They wereimpatient with general asthma education that didnot address these specific problems. This resultedin emphasis on exchange of information amongparticipants and question-and-answer sessions,often using an “Ask the Doc” format.

Educational interventions to improve asthmacare in children should target the children andtheir families, health care providers, teachers,day care providers, peer groups, and othercommunity members. In this way, patientscan receive consistent messages from all withwhom they come into contact.

Modalities of Implementation

Asthma education that is incorporated into arange of activities is more attractive thanformal classes.

The St. Louis researchers found very little intereston the part of parents and their children inasthma education classes and similar formalprograms for asthma education. Consequently,greater emphasis was placed on integratingasthma-related messages into other educationalprograms (e.g., general wellness courses taughtthrough a neighborhood college maintained byGrace Hill), neighborhood activities, and massmedia. Samples of educational activities include“Asthma Skate-Outs” sponsored by local mer-chants, asthmaawareness prayerprograms inneighborhoodchurches, in-servicetraining for neigh-borhood schoolstaff, health fairs,proclamation ofMarch as Asthma Month by the mayor of St.Louis, and media coverage through newspapersand electronic media, including call-in radioshows with Neighborhood Asthma Coalitionrepresentatives answering callers’ questions.

The concept of the “teachable moment” was usedby the St. Louis project to integrate asthmaeducation into a range of attractive activities.This approach is borrowed from classroom


Information about localresources should beincorporated into

community educationprograms.

36


teaching strategies based on Robert Gagné’s bookThe Conditions of Learning (Gagné, 1977). Theteachable moment approach pulls individualconcepts from standard curricula to stand alone

during the course ofasthma-relatedactivities. It re-quires that adultswho teach andsupervise studentshave a repertoire ofasthma informationand a good sense of

how individual facts can be integrated into thecontext of an activity at hand. With the teach-able moment approach, issues that arise duringthe course of a variety of program activities canbe used as a platform for asthma managementlessons.

In scheduling educational interventions,convenience is a significant factor for patientsand their families.

The Texas researchers originally tried to scheduleall of the patient education sessions immediatelybefore or after a scheduled physician visit.However, some families preferred to come atanother time. Teaching sessions also had to bescheduled around school and work schedules. InNew Mexico, because of long distances to travel,families preferred having classes linked to a clinicvisit. Stand-alone classes would not have worked.

Some of New York’s clinics had clinical sessionswhere a majority of the scheduled patients hadasthma; this made holding group asthma educa-tion sessions convenient for families and staff.(See clinical notes section, page 15.) A variety ofmodalities (e.g., telephone calls, camps, groupeducation classes, home visits) may be useful forfollowup and reinforcing asthma education.

In St. Louis, providing transportation to programactivities greatly increased attendance. This maybe important in settings where participants do

not have their own means of transportation,where public transportation is not adequate, andin high crime areas.

A toll-free telephone number is a valuableresource for asthma education in rural areas.

A toll-free telephone number set up for easyinformation access by the New Mexico projectwas well used not only by families but also byother health care providers, pharmacists, and casemanagers.

A neighborhood asthma summer camp can bea useful approach to addressing not onlyasthma but also the social and health needs ofan urban community.

The St. Louis researchers found a neighborhoodasthma summer camp to be a valuable means ofgetting the community involved in asthmaeducation activities. Holding the camp withinurban neighborhoods, rather than in rural areas,allows asthma education to reach friends andfamily members who otherwise could not partici-pate. The camp curriculum includes interactivediscussions and games to increase asthma knowl-edge; development of problem-solving andcommunication skills; crafts such as T-shirtpainting and full-body drawings, aimed atenhancing self-esteem; physical activities such askickball, exercises, breathing techniques, singing,and dancing, aimed at giving children withasthma confidence in their physical capabilities;visits by a professional storyteller with storiesabout African American heroes who overcamehardships; and field trips to educational attrac-tions in the St. Louis area. Older campers serveas counselors to younger campers, which givesthe counselors an opportunity to learn while theyteach. The camp is held from midmorning untilmidafternoon for 1 week in each of severalneighborhood sites. Transportation is providedand has been judged essential to the camp’ssuccess.

In scheduling educationalinterventions, convenience

is a significant factor forpatients and their families.

37

Originally, there was concern that telephone callsand meeting at neighborhood activities would beinsufficiently intense, relative to home visits.However, both neighborhood staff members andprogram participants indicated many concernsabout home visits in light of general concernabout neighborhood crime. Also, the telephonecalls and meetings at community events appearto have supported effective and helpful relation-ships between staff and participants. Home visitsare now conducted occasionally but not on aregular basis.

Recruiting, Training, and Retaining Staff and

Volunteers

Lay personnel can be involved in thedevelopment and implementation of asthmaeducation programs.

Family educators (parents of children withasthma) in the New Mexico program wereidentified by health professionals in the PediatricPulmonary Division and then interviewed bytelephone to determine interest and qualifications(see appendix III). The educators were trained toreinforce asthma education and provide supportto families. Some went on to contribute theirskills to the community at large by being in-volved in asthma camp and teaching the OpenAirways for Schools curriculum. Several went toschool for nursing and respiratory therapy.

In St. Louis, neighborhood residents were re-cruited to provide individualized basic asthmaeducation, assistance, and social support tochildren with asthma and their caregivers. Theprogram’s focus on simple messages increased thelikelihood of successfully training nonprofession-als to conduct asthma education. The workersalso provided general assistance in programdevelopment and implementation.

Creating a detailed and easy-to-follow curriculumwith scripted sections for people to use as modelsallowed people with no background in asthma to

In rural areas, many factors can affect theability of families to attend group asthmaeducation classes and present additionalproblems for the project staff.

Families in the New Mexico project had to travelto Albuquerque to attend group educationalsessions. During the same day, children receivedclinical evaluation, but this often involved a verylong wait. Finding space for the classes, arrang-ing babysitting for young children during theclasses, and bad weather contributed to theresearchers’ logistical problems. Families whomissed one of the sequentially designed classeshad to be rescheduled, which created furtherdifficulties.

Home visits are not always necessary toreinforce asthma education.

The New Mexico investigators found that insome cases one or two visits by the home familyeducator, rather than six, would have beensufficient. In other cases, families may benefitfrom a different type of intervention (e.g., peercounseling for teenagers).

There was extensive use of telephone calls and ofmeetings at neighborhood events in St. Louis.

Lay personnel can be valuable to community asthmaeducation programs.


38


learn quickly and present the Washington, D.C./Baltimore program without assistance.

Selecting people who had asthma themselves orwho had a family member with asthma did notalways prove to be advantageous. Althoughthese individuals were generally familiar withasthma and eager to help children with asthma,special attention had to be given to be certain the

program messageswere deliveredwithout bias whenthese messagescontradictededucators’ personalbeliefs aboutasthma manage-

ment (e.g., believing it was acceptable to havepets or believing in homeopathic or “alternative”treatments for asthma).

Compensation is an important factor inrecruitment and retention of staff.

Initial plans to recruit volunteers for the St. Louisprogram proved unworkable. The researchersfound that payment is necessary and appropriatewhen regular execution of extensive responsibili-ties is desired. Thus, neighborhood residentshave been recruited as paid staff. Moreover,increasing the salary for their positions reducedan unacceptable turnover rate.

Part-time salaries may not be sufficient to retainstaff. Several health educators left the NewMexico and Washington, D.C./Baltimore studiesbecause the work was not full time.

Strategies to maintain feelings of unity withthe community are useful in retainingneighborhood residents as project staff.

The St. Louis program was plagued initially by ahigh level of turnover among staff membersrecruited from neighborhood residents. Factors

such as unclean home environments, gangincidents, and illiteracy created anxieties amongthe peer neighborhood workers as to their role inthe neighborhood. To maintain homogeneityamong the workers and intended residents, theresearchers revised training to include attentionto the role of the workers and reduced emphasison home visits. These changes helped increasecommunity staff retention, job performance, andimpact by enabling them to be more acceptingand work with a greater sense of unity with thosethey seek to help.

Regular (if possible, biweekly) meetings withproject staff are important for troubleshootingand maintaining staff skills, interest, andcohesiveness.

Barriers to Implementation of Intervention

Social and economic barriers can inhibitimplementation of an intervention.

In New Mexico, money for medications, medicalcare, and travel expenses posed a huge barrier.Inability to maintain a vehicle for traveling longdistances was mentioned frequently as a barrier.The New Mexico researchers also found thatsome patients were hesitant to admit if they didnot understand instructions. This lack of com-munication posed another barrier to care.

Lack of pharmacies, especially 24-hour pharma-cies, in the St. Louis program neighborhoodsposed another barrier to care. Participants’hesitation to use medications daily for fear ofdependence and increased tolerance also inhibitedasthma management.

Interventions for health professionals requiretremendous time and effort.

(See clinical notes section for a full discussion ofeducation for health professionals.)

Compensation is animportant factor in

recruitment and retentionof staff.

39

References

Doak CC, Doak LG, Roos JH. Teaching PatientsWith 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’sYoung. No. PL02. Department of EducationReport #16, 1986.

Kozol J. Illiterate America. Garden City, NY:Anchor Press/Doubleday, 1985.

Redman BK. The Process of Patient Education. 5thed. St. Louis, MO: C.V. Mosby Co., 1984.


40


41

APPENDIX I:ADDITIONAL MINORITY ASTHMA

INTERVENTION PROJECTS

National Heart, Lung, and Blood Institute

The National Heart, Lung, and Blood Institute iscurrently funding three projects, each for 3 years,under the title “Developing and Implementing atthe State and Local Level Educational Strategiesand Interventions for Controlling Asthma inInner-City and High-Risk Populations.” Theseprograms are briefly described below.

Abt Associates, Inc., and the DimockCommunity Health Center

Roxbury, Massachusetts

The goal of this project is to develop a long-term,sustainable, communitywide coalition to reduceasthma morbidity and mortality in the Bostoninner-city communities of Roxbury andDorchester. Abt Associates is developing andevaluating the educational intervention incollaboration with Dimock Community HealthCenter, an experienced, community-based healthand human services agency. A number of otherhealth, administrative, social service, educational,and media organizations in the community areparticipating in the effort by identifying re-sources, planning and conducting aspects of theprogram, and publicizing the campaign in thecommunity and within the participating organi-zations. This diversity of perspectives has pro-duced a broad range of coordinated educationalactivities targeted to adults and children withasthma, their families, preschool teachers andfamily outreach workers, and health care provid-

ers. Educational strategies were developed andtested during the first year of the project and arebeing implemented during the second. Duringthe third year, intervention, evaluation, anddocumentation will be continued. Additionalinformation about this project is available fromDavid B. Connell, Ph.D., project director, or fromSheila Moroney. Dr. Connell’s address is AbtAssociates, Inc., 55 Wheeler Street, Cambridge,MA 02138; the telephone number is (617) 492-7100. Ms. Moroney’s address is Dimock Com-munity Health Center, 55 Dimock Street,Roxbury, MA 02119; the telephone number is(617) 442-8800.

Fresno Asthma ProjectFresno, California

The Fresno Asthma Project is a collaborativeeffort among the San Joaquin Valley HealthConsortium (a consortium of 26 communityhealth services agencies and health professionseducation institutions), Kaiser PermanenteMedical Care Program (a health maintenanceorganization), the American Lung Association ofCentral California, and the American Institutesfor Research (a behavioral and social scienceresearch institute) to control asthma in thecounty of Fresno, which has one of the highestasthma mortality rates in the United States. Theintervention involves a patient/family educationcomponent and a professional education compo-nent, each supplemented by a multimediacampaign to raise public awareness about asthma

42


and increase understanding about the disease andits treatment. Existing asthma education pro-grams for patients are being adapted for theethnically diverse community in Fresno and usedfor asthma education in a variety of settings.Professional education is being conductedthrough annual asthma conferences, periodicgrand rounds at key medical centers, andinservice programs for school personnel. Addi-tional information about this project is availablefrom Sandra R. Wilson, Ph.D., principal investi-gator. She can be reached at the AmericanInstitutes for Research, P.O. Box 1113, 1791Arastradero Road, Palo Alto, CA 94302; thetelephone number is (415) 493-3550.

Macro International, Inc., and Baylor Collegeof Medicine

Houston, Texas

Baylor College of Medicine is working withMacro International, a computer technologyapplications company, to develop and implementan asthma education program for 7- to 12-year-old African American and Hispanic children inthe inner-city areas of Houston. The project isusing interactive multimedia and decision-support-systems technology to tailor instructionto individual children with asthma and generatespecific recommendations for each child’s family,health care provider, and school. Currently, thecomputer-based instructional system is beingtested with children during scheduled visits tohealth care providers. The tailored instruction isbased on data on the child’s medical history andpersonal characteristics (such as age, gender, raceor ethnicity, culture, and literacy). Eventually,the system will be applied to other settings, suchas emergency departments, where it will encour-age regular primary care and create individual-ized asthma management plans. Additionalinformation about this project is available fromRobert S. Gold, Ph.D., Dr.P.H., principal investi-gator. Dr. Gold can be reached at Macro Interna-

tional, 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 AsthmaStudy

Since 1991, the National Cooperative Inner-CityAsthma Study has been involved in the design,implementation, and evaluation of a comprehen-sive intervention program to reduce asthmamorbidity among urban African American andLatino children. Eight centers are participatingin this study, which has been conducted in twophases. In phase I, baseline data on health careutilization and access, adherence to medications,family functioning, home environment, andhousehold demographics were collected andevaluated. Physiological data were also collectedand analyzed. Phase II consists of a multidimen-sional approach to reduce asthma morbidity bytraining families to translate asthma knowledgeinto health-promoting skills and behavioralchanges. A key component of the intervention isthe use of asthma counselors, specially trainedsocial workers who work closely with familiesover an extended period of time, troubleshoot,and empower families to address a variety ofproblems. A standardized risk assessment toolwas created to screen individual children for themedical, psychosocial, and environmental riskfactors identified in phase I so that the interven-tion could be appropriately tailored. For addi-tional information about the National Coopera-tive Inner-City Asthma Study, please contact theOffice of Epidemiology and Clinical Trials,National Institute of Allergy and InfectiousDiseases, Solar Building, Room 4A23, 6003Executive Boulevard, Rockville, MD 20852; thetelephone number is (301) 496-0982.

43

Publications

Butz AM, Malveaux FJ, Eggleston P, et al. Use ofcommunity health workers with inner-citychildren who have asthma. Clin Pediatr33(3):135-141, 1994.

Butz AM, Malveaux FJ, Eggleston PA, et al. Areview of community-based asthma interventionsfor inner city children. Pediatr Asthma AllergyImmunol 8:149-156, 1994.

Evans, D. To help patients control asthma, theclinician must be a good listener and teacher[editorial]. Thorax 48(7):685-687, 1993.

Fisher EB, Jr., Auslander W, Sussman L, OwensN, Jackson-Thompson J. Community organiza-tion and health promotion in minority neighbor-hoods. Ethnicity Dis 2(3):252-272, 1992.

Fisher EB, Jr., Sussman LK, Arfken C, et al.Targeting high risk groups: Neighborhoodorganization for pediatric asthma management inthe Neighborhood Asthma Coalition. Chest 106(4Suppl):248S-259S, 1994.

Gaioni SJ, Fisher EB, Jr., Strunk RC. Identifica-tion and management of psychosocial factors. In:Bierman CW, Pearlman DS, Shapiro GG, BusseWW (Eds.) Allergy, Clinical Immunology andAsthma Management in Infants, Children and Adults.3rd edition. Orlando, FL: W.B. Saunders Com-pany, in press.

Hendricson WD, Wood PR, Hidalgo HA,Kromer ME, Parcel GS, Ramirez AG. Implemen-tation of a physician education intervention: theChildhood Asthma Project. Arch Pediatr AdolescMed 148(6):595-601, 1994.

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

Mellins RB, Evans D, Zimmerman B, Clark NM.Patient compliance: are we wasting our time anddon’t know it [editorial]? Am Rev Respir Dis146(6):1376-1377, 1992.

Rand CS, Butz AM, Huss K, Eggleston P,Thompson L, Malveaux FJ. Adherence to therapyand access to care: the relationship to excessasthma morbidity in African American children.Pediatr Asthma Allergy Immunol 8:179-184, 1994.

Strunk RC. Death due to asthma: new insightsinto sudden unexpected deaths, but the focusremains on prevention [editorial]. Am Rev RespirDis 148(3):550-552, 1993.

Strunk RC, Fisher EB, Jr. Risk factors for morbid-ity and mortality in asthma. In: Szefler SJ, LeungDYM (Eds.) Severe Asthma: Pathogenesis andClinical Management. New York: Marcel Dekker,in press.

Strunk RC, Fisher EB, Jr., Davis S, Sussman L.Use of prospective disease management tominimize asthma symptoms and maximizepotential. In: Gershwin ME, Halpern GM (Eds.)Bronchial Asthma Principles of Diagnosis andTreatment 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


Materials

Educational materials and research tools fromseveral of the projects are available for sale fromthe National Technical Information Service(NTIS). Cost and ordering information can beobtained by calling (703) 487-4650 or writing toNTIS, 5825 Port Royal Road, Springfield, VA22161.

An Intervention for Hispanic Children withAsthma (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’stoo 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 adifference” (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 badcombination” (3:47)

• Handouts/Worksheets (text in both Englishand Spanish)

– Symptoms: “What is easy to do?”

– Peak flow: “How to use your peak flowmeter” and “Daily record chart”

– Medications: “Medicines”

– Causes: “Asthma causes”

• Instructional guide (includes behavioral andlearning objectives, a list of requiredequipment/supplies, and a teaching outline foreach of four teaching modules)

• Enrollment questionnaires (parent versionavailable in English and Spanish; child versionin English only)

A Self-Management Educational Program forHispanic Asthmatic Children (New Mexicoproject)

• Your Child and Asthma (comprehensive lay-language booklet describing asthma causes,symptoms, and treatment; 30 pages)

Neighborhood Asthma Coalition (St. Louisproject)

• Neighborhood Asthma Coalition Summer DayCamp 1995: Curriculum Guide for ProgramCoordinators (contains teaching instructions,script, and health messages for daily asthmalessons)

• Neighborhood Asthma Coalition: Physician’sGuide (includes patient education materials foroutpatient settings)

Community Interventions for MinorityChildren With Asthma (Washington, D.C./Baltimore project)

• The A+ Asthma Club (illustrated workbook forsix meetings)

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

• Parental Baseline Questionnaire

45

Other Asthma Information Sources

The following organizations are active in asthmaeducation and research. For information andmaterials, contact:

• Allergy and Asthma Network/Mothers ofAsthmatics, Inc. (1-800-878-4403)

• American Academy of Allergy andImmunology (1-800-822-2762)

• American College of Allergy and Immunology(1-800-842-7777)

• American Lung Association (local chapterslisted in telephone directories)

• Asthma and Allergy Foundation of America(1-800-727-8462)

• National Jewish Center for Immunology andRespiratory Medicine Information Service(1-800-222-5864)

• National Institute of Allergy and InfectiousDiseases (301-496-5717)

• NHLBI Information Center (301-251-1222)

APPENDIX II: RESOURCES

46


47

APPENDIX III:INSTRUMENTS

Instruments Not Available.

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

Fax: 301-251-1223Mail: NHLBI Information Center

Attention: Web SitePO Box 30105

Bethesda, MD 20824-0105

48


AST

HM

A T

REA

TMEN

T PL

AN F

ORM

(NEW

YO

RK P

ROJE

CT)

GRAPHIC NOT AVAILABLE

49

APPENDIX III: INSTRUMENTS

AST

HM

A T

REA

TMEN

T PL

AN F

ORM

(NEW

YO

RK P

ROJE

CT) C

ON

TIN

UED


50


ASTHMA SELF-MONITORING PLAN (NEW MEXICO PROJECT)


51


AST

HM

A M

AN

AG

EMEN

T PL

AN—

WH

EN S

YM

PTO

MS

INCR

EASE

(NEW

MEX

ICO

PRO

JECT

)


52


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


53

DIAGNOSE AND CLASSIFY SEVERITY OF ASTHMA



54


MA

NA

GEM

ENT

OF

AN A

STH

MA A

TTA

CK:

HO

ME

TREA

TMEN

T


55

MED

ICA

L H

ISTO

RY F

ORM

(NEW

MEX

ICO

PRO

JECT

)



56


MED

ICA

L H

ISTO

RY F

ORM

(NEW

MEX

ICO

PRO

JECT

) CO

NTI

NU

ED


57

MED

ICA

L H

ISTO

RY F

ORM

(NEW

MEX

ICO

PRO

JECT

) CO

NTI

NU

ED



58


ASTHMA SCREENING QUESTIONNAIRE (NEW YORK PROJECT)


59


ASTHMA INFORMATION CARD (NEW YORK PROJECT)


60


HEALTH FACILITATOR TELEPHONE INTERVIEW (NEW MEXICO PROJECT)


Dis c r iminat i on Prohib i t ed :Under prov i s i on s o f app l i cab l epub l i c laws enac t ed by Congr e s ss in c e 1964, no p e r s on in th eUni t ed S ta t e s sha l l , on th egrounds o f ra c e , c o l o r, nat i ona lor ig in , handi cap , o r ag e , b eex c luded f r om par t i c ipa t i on in ,b e d en i ed th e b ene f i t s o f, o r b esub j e c t ed t o d i s c r iminat i on underany program or a c t iv i ty ( o r, onthe ba s i s o f s ex , wi th r e sp e c t t oany educat i on program or a c t iv i-ty) r e c e iv ing Federa l f inanc ia la s s i s tanc e . In addi t i on , Exe cu t iv eOrder 11141 prohib i t s d i s c r imi-nat i on on th e ba s i s o f ag e by c on-t ra c t o r s and sub c on t ra c t o r s in th ep e r f o rmanc e o f Federa l c on t ra c t s ,and Exe cu t iv e Order 11246s ta t e s that no f ed e ra l l y fundedcontra c t o r may d i s c r iminat eagain s t any employ e e o r app l i cantf o r employment b e caus e o f ra c e ,c o l o r, r e l i g i on , s ex , o r nat i ona lor ig in . Ther e f o r e , th e Nat i onalHear t , Lung , and Blood In s t i tu t emus t b e op e ra t ed in c ompl ianc ewi th th e s e laws and Exe cu t iv eOrder s .


U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

P u b l i c H e a l t h S e r v i c eN a t i o n a l I n s t i t u t e s o f H e a l t hN a t i o n a l H e a r t , L u n g , a n d B l o o d I n s t i t u t e

N I H P u b l i c a t i o n N o . 9 6 - 3 6 7 5N o v e m b e r 1 9 9 5


National Asthma Education and Prevention Program · 2014-04-10 · ASTHMA MANAGEMENT IN MINORITY...

Documents

Transcript of National Asthma Education and Prevention Program · 2014-04-10 · ASTHMA MANAGEMENT IN MINORITY...