a review of community-based asthma interventions for inner-city children

8
PEDIATRIC ASTHMA, ALLERGY & IMMUNOLOGY Volume 8, Number 3, 1994 Mary Ann Liebert, Inc., Publishers A Review of Community-Based Asthma Interventions for Inner-City Children ARLENE M. BUTZ, B.S.N., ScD.,1 FLOYD J. MALVEAUX, M.D., Ph.D.,2 PEYTON A. EGGLESTON, M.D.,3 LERA THOMPSON, M.P.H.,2 KAREN HUSS, B.S.N., D.N.Sc.,1 and CYNTHIA S. RAND, Ph.D.4 ABSTRACT Despite significant progress in asthma treatment, morbidity and mortality rates for children with asthma have increased over the past decade. Poverty has been associated with an in¬ creased prevalence of asthma, level of severity, and increased hospitalizations due to asthma. Educational asthma self-management programs have been shown to reduce school absen¬ teeism and symptoms, change health care utilization, and improve self management skills. However, most studies have included hospital-based or nondisadvantaged children. This pa¬ per reviews five unique community-based asthma management programs targeting inner-city disadvantaged children. The asthma intervention studies were selected for review based on: (1) community involvement in subject recruitment or administration of the intervention; (2) basic asthma self-management education included as part of intervention; and (3) focusing on inner-city disadvantaged children and families. Similar findings across the five community-based programs included the need for educating health professionals regarding asthma management, increased attention to the home environ¬ ment, and targeting asthma education programs to undertreated groups who lack adequate access to care. Use of community settings, such as public schools, churches or community- based clinics, are optimal sites for delivering community-based asthma management pro¬ grams. Linkages and partnerships between health professionals and community/local govern¬ ment organizations or parent groups can facilitate solving the housing, social, and medical access problems of many inner-city families detected by the studies. INTRODUCTION Despite significant progress in asthma treatment, there has been an increase in morbidity and mortality rates for children with asthma over the past decade.*1"*' It is estimated that there are more than 4500 deaths per year in the United States from asthma.(5) Prevalence rates for childhood asthma are persistently higher in 'The Johns Hopkins University School of Nursing and 3School of Medicine, Department of Pediatrie Allergy and Immunology, "School of Medicine, Division of Pulmonary and Critical Care Medicine, all in Baltimore, Maryland, and 2Howard University, Department of Microbiology, Washington, D.C. 149

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Page 1: A Review of Community-Based Asthma Interventions for Inner-City Children

PEDIATRIC ASTHMA, ALLERGY & IMMUNOLOGYVolume 8, Number 3, 1994Mary Ann Liebert, Inc., Publishers

A Review of Community-Based Asthma Interventions forInner-City Children

ARLENE M. BUTZ, B.S.N., ScD.,1 FLOYD J. MALVEAUX, M.D., Ph.D.,2PEYTON A. EGGLESTON, M.D.,3 LERA THOMPSON, M.P.H.,2KAREN HUSS, B.S.N., D.N.Sc.,1 and CYNTHIA S. RAND, Ph.D.4

ABSTRACT

Despite significant progress in asthma treatment, morbidity and mortality rates for childrenwith asthma have increased over the past decade. Poverty has been associated with an in¬creased prevalence of asthma, level of severity, and increased hospitalizations due to asthma.Educational asthma self-management programs have been shown to reduce school absen¬teeism and symptoms, change health care utilization, and improve self management skills.However, most studies have included hospital-based or nondisadvantaged children. This pa¬per reviews five unique community-based asthma management programs targeting inner-citydisadvantaged children. The asthma intervention studies were selected for review based on:

(1) community involvement in subject recruitment or administration of the intervention; (2)basic asthma self-management education included as part of intervention; and (3) focusing on

inner-city disadvantaged children and families.Similar findings across the five community-based programs included the need for educating

health professionals regarding asthma management, increased attention to the home environ¬ment, and targeting asthma education programs to undertreated groups who lack adequateaccess to care. Use of community settings, such as public schools, churches or community-based clinics, are optimal sites for delivering community-based asthma management pro¬grams. Linkages and partnerships between health professionals and community/local govern¬ment organizations or parent groups can facilitate solving the housing, social, and medicalaccess problems of many inner-city families detected by the studies.

INTRODUCTION

Despite significant progress in asthma treatment, there has been an increase in morbidity and mortalityrates for children with asthma over the past decade.*1"*' It is estimated that there are more than 4500 deaths

per year in the United States from asthma.(5) Prevalence rates for childhood asthma are persistently higher in

'The Johns Hopkins University School of Nursing and 3School of Medicine, Department of Pediatrie Allergy andImmunology, "School of Medicine, Division of Pulmonary and Critical Care Medicine, all in Baltimore, Maryland, and2Howard University, Department of Microbiology, Washington, D.C.

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BUTZ ET AL.

African-American and impoverished children.'1·4' Poverty has been associated with an increased prevalence ofasthma,'4' level of severity,' 1·6-7' and hospitalizations due to asthma.'8' Not only are children in low-incomefamilies more likely to experience many illnesses, particularly chronic illnesses,'9' but they are also less likelyto receive adequate medical care.'10' Additional explanations for the increase in asthma morbidity and mortal¬ity in African-American children include increased exposure to environmental allergens and irritants (e.g.,passive cigarette smoke, cockroaches), lack of regular asthma care, inconsistent or nonexistent education re¬

garding appropriate asthma medication use, and inadequate social resources.'11-13'Several educational self-management programs have demonstrated benefits in either reduced school absen¬

teeism and symptoms reports, change in health service utilization, and improved self-management skills.'14-16'However, the majority of these intervention programs have included biased samples (e.g., volunteer or clinic-based subjects with few inner-city populations) and were clinic- or hospital-based rather than implemented di¬rectly in the community."7' Major elements shared by effective community-based asthma management pro¬grams include optimal clinical care through individualized medication plans, emphasis on parent and patienteducation, and attempts to reduce barriers to patient adherence.'18' The purpose of this paper is to review fiveunique community-based asthma management programs and propose recommendations for future programdevelopment and implementation.

REVffiW OF FrVE COMMUNITY-BASED ASTHMA INTERVENTIONS

Five community-based asthma intervention studies were selected for review based on the following criteria:first, subject recruitment and/or administration of the intervention was conducted exclusively in the commu¬

nity and community sites included public schools, community health clinics, or in the childrens' homes; sec¬

ond, all studies included basic asthma self-management education for parents and children; third, all studies fo¬cused on inner-city disadvantaged children and families.

Case management and quality assurance programCase management and quality assurance techniques were utilized as an intervention for improving asthma

care of Medicaid-eligible, inner-city children in Baltimore, Maryland.'18' Eighty-eight preschool children, whohad two or more emergency room visits for asthma within a three-month period, were targeted to receive theintervention. This program had three major components: assessment of the care of individual patients withfeedback to their primary care providers (PCPs), periodic contact with the parents by a nurse, and provision ofasthma education materials to parents.

Specifically, telephone interviews with parents were conducted by the nurse to assess knowledge of homeasthma care and the type of care prescribed by the child's physician. Twenty-four hour telephone consultationfor asthma by the nurse or physician backup was available to the families. Each child's asthma managementplan was reviewed by a physician with the nurse to identify aspects of the patient's medical care that could beimproved. These included drug regimens, specific parent educational goals, and the need for allergy consulta¬tion. The patient's PCP was then contacted by the nurse and offered medical care suggestions for treatment ofthe child's asthma. No physician refused permission for a patient to participate. Bimonthly telephone callswere made to the parents in order to assess medication and educational needs. After any acute care visit to theemergency room, a telephone call was made to the parents, inquiring about the child's status and parents' un¬

derstanding of the treatment plan. Written asthma education materials were also sent to the parents on a routinebasis.

Outcome measures were evaluated and compared during two periods, including a three-month preinterven-tion and a three-month postintervention time period. From the first to the second period, acute care visits de¬creased by 50% suggesting that the intervention had some effect on acute care utilization. The authors con¬

clude that use of case management and quality assurance techniques improved asthma management skills forall involved with the care of a child with asthma (e.g., the child, parent, physician, pharmacist, and teacher) as

utilized in this program.

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COMMUNITY-BASED ASTHMA INTERVENTIONS

Community-based educational asthma programThis self-management educational intervention, implemented in public schools in Villawood, Sydney,

Australia, was targeted to children with asthma and their parents, doctors, pharmacists, school teachers, andcommunity nurses.'17' Initially, 132 children were recruited from economically disadvantaged communities(intervention group, 72; control group, 60) who had: (1) a doctor's diagnosis of asthma; (2) a current asthmamedicine requirement; and (3) current bronchial hyperresponsiveness and recent symptoms. Each child as¬

signed to the intervention group received two educational sessions at school with their parents present during a

one-month period. An overview of a management plan was given to each family and their physician. Each fam¬ily was asked to consult with their doctor to discuss the plan. All physicians who cared for children in the in¬tervention group and all local pharmacists were invited to attend workshops that presented a well-used and re¬

spected asthma management plan.'19' All community health nurses from local health centers and all schoolteachers from the community received an asthma educational program conducted in their workplaces. If anyfamily member, doctor, or pharmacist did not attend the educational sessions, they were subsequently mailedasthma educational materials.

Attendance rates for the educational sessions varied by group. All teacher and community health nurses at¬tended the sessions as compared to very few pharmacists (21 %) and doctors (20%). Improvement in lung func¬tion in the children receiving the intervention was detected at the six month follow-up. In the interventiongroup, FEVj (forced expiratory volume in 1 second) was significantly improved from baseline (mean = 1.78L) as compared to the six-month follow-up (mean = 2.13 L; < 0.001). Unscheduled doctor or emergencyroom visits were also significantly reduced between the six-month follow-up and baseline (baseline mean =

2.68, six month mean = 1.5\;p< 0.01).

"Open Airways" school program

Providing a school-based asthma education program that focused primarily on teaching the child and pro¬viding parental participation was the goal of this study in New York City.'20' Twelve public elementary schoolsfrom two New York community school districts agreed to enroll children with asthma, based on parental re¬

ports of at least three episodes of asthma in the past year. Each school was paired according to ethnic composi¬tion and size and then randomly selected to receive the education program or serve as a control school. A totalof 239 low-income children (experimental, 134; control group, 105) participated in the one-year follow-upstudy. Parents did not attend the educational sessions but received written materials regarding managementskills the children were learning. The asthma educational program, entitled "Open Airways"'21' was adaptedfor school use and emphasized the child's responsibility for recognizing symptoms and taking appropriatemanagement steps. The "Open Airways" school program, held during the second day, consisted of six 60-minute sessions for groups ofeight to 12 children focusing on children's independent actions as self-managers.

One-year follow-up data showed that the group receiving the educational program (experimental group) hadhigher scores on an index of asthma management (p < 0.05), greater self-efficacy of asthma management skills(p = 0.05), more influence on parents' asthma management decisions (p < 0.05), better grades in school, fewerepisodes of asthma (p < 0.01), and episodes of shorter average duration (p < 0.01) compared to the controlgroup. No differences were observed for changes in the number of school absences.'20'

Community-based asthma education intervention with community outreachThis randomized clinical trial compared a school-based educational and a community health worker (CHW)

outreach intervention to determine if separate or combined interventions were effective in reducing asthmamorbidity in inner-city children from Baltimore, Maryland and Washington, DC.'22' Children with asthma(N = 392) were identified in 42 inner-city elementary schools. Each school was randomized into one of fourgroups: (1) minimal intervention; (2) school-based asthma education program; (3) a community health worker(CHW) program; and (4) a combined school-based education/community health worker program. The mini¬mal intervention group received educational literature sent home with the children. The school-based educa¬tion program consisted of six educational sessions (A+ Asthma curriculum) designed to increase the asthmaticchild's knowledge and management skills. The A+ Asthma curriculum is culturally sensitive, since it was pi-

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BUTZ ET AL.

loted with inner-city children for appropriate language and illustrations. The educational sessions are deliveredto the children in the school setting and cover triggers, medication use, an asthma action plan for acute asthmaepisodes, decision making about asthma care, and environmental control techniques. The CHW interventionconsisted of home visits to assigned families by trained lay personnel, recruited from the community and su¬

pervised by a nurse, to assist families in overcoming barriers to asthma care. Community health workers of¬fered referral information and emotional support as well as basic asthma information. Medical issues were notaddressed by the CHWs. Rather, medical issues were referred to the nurse supervisor and the child's primarycare provider. Primary care physicians, identified by each parent, were mailed a copy of the National AsthmaEducation Program (NAEP) recommendations'23' along with a brief description of the study and its goals.

Lack of regular primary care for asthma management and significant misuse and misunderstandings ofasthma medications were identified in this sample of inner-city children with asthma. Medication use was of¬ten in conflict with the recommendations set forth in the NAEP guidelines. More than 80% of the children re¬

ported using ß2 agonist medication, and of these, nearly 32% reported using no other medication. Only 1 in 5reported use of inhaled anti-inflammatory medications. Use of home remedies, including herbal teas andcough medicine, were reported by 26% of the parents. Fewer than 10% of these children reported using a peakflow meter on a regular basis.

Several environmental problems were identified by the CHWs during the home assessments.'24' One-quar¬ter of the families reported a roach problem and 19% reported rodents present in their household. Over half(56%) of the families reported one or more smokers living in the homes of the children. Use of plastic zipperedcovers for mattresses (13%) and pillows (3%) was low and over one-fourth (26.1%) of families reported hav¬ing a pet (cat, dog, or bird).

Preliminary analysis of the 12-month follow-up data revealed that the combined intervention program(school-based and outreach by CHWs) reduced high rates of ER (emergency room) use, activity restrictions,and parental days lost from work. Additionally, this group reported having a PCP. However, also evident at the12-month follow-up, were continued high rates of ER use for asthma care and use of suboptimal asthma thera¬pies, consistent with previous interventions"8' examining physician practices.

Community/school-based asthma educational program: A community partnershipThis ongoing demonstration project recruits children, identified with asthma, from four schools in one cir¬

cumscribed, inner-city community in Baltimore, Maryland (P. Eggleston, personal communication, 1994).The goals of the project are to reduce school absenteeism, asthma symptoms, and ER visits. A partnership was

developed between community leaders and health professionals from a large academic medical institution.Incorporated into the project, is a specially trained nurse who is assigned to the four elementary schools in or¬

der to deliver an education program (A+ Asthma curriculum), assess children for asthma symptoms and med¬ication use, and work with CHWs to provide outreach to families of children with asthma. Surveillance by thenurse is conducted at each school and includes chest auscultation, peak flow readings, and reports of school ab¬senteeism or hospitalizations by children and parents. The nurse is also available for educational inservice pre¬sentations to staff and parent groups and provides advice about asthma to the principals. The office of theasthma nurse is based in one of the schools in order to achieve easy access for the children and their families tothe nurse. Medication or acute asthma management problems are referred to the childrens PCPs with theasthma nurse facilitating communication between the families and the PCPs.

Community health workers, supervised by the asthma school nurse (1) conduct case finding of the more se¬

vere children with asthma; (2) make home visits to the families for emotional and informational support; and(3) assist the asthma nurse in conducting the asthma educational program and parent support groups.Community health workers, who have experiential expertise and strong neighborhood affiliations, are re¬

cruited from the community.Active community participation in this study includes linking families to appropriate community and mu¬

nicipal resources and increasing community awareness of asthma in children. Biweekly meetings of the com¬

munity and health professionals allow continued focus on the resource needs of the children with asthma.Housing relocation, funding a free local asthma camp, raising funds for continuation of the project, and spon-

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COMMUNITY-BASED ASTHMA INTERVENTIONS

soring educational/support groups from parents in the local churches illustrates the community involvement inthis program. Preliminary results indicate significant reduction in school absenteeism and emergency room

visits. In summary, all five studies addressed urban disadvantaged pediatrie asthma populations (Table 1).Asthma self-management education strategies were used in all five studies in combination with case manage¬ment, professional and community asthma education, community outreach, surveillance in the schools, andcommunity partnership. All interventions demonstrated some positive outcomes.

DISCUSSION

Several components and findings are similar across these unique community-based programs. First, educat¬ing health professionals regarding asthma management was a major component of almost all intervention pro¬grams'17·18·22' (P. Eggleston, personal communication, 1994). Undertreatment, including low use of inhaledsteroids, lack of peak flow monitoring, and use of nonmedication home remedies or cough syrup to treatasthma symptoms were too often reported by families who have children with asthma.'17·22' Furthermore, med¬ication use was often in conflict with recommendations of the NAEP guidelines.'23'

For community asthma interventions to be effective for inner-city children and families, increased attentionto the home environment is necessary. Direct observation of the environmental problems in these homes re¬

vealed the need to eliminate indoor allergens and irritants for many families. Environmental control in inner-city populations may initially require eradicating roach and rodent infestations as well as facilitating familymembers attendance at smoking cessation programs. Huss (1994) reports that over half (56%) of the identifiedchildren with asthma lived in a household that included a cigarette smoker.'22' Furthermore, over 86% of innercity houses have been reported to contain high levels of mite or cockroach allergen in one community.'25'

Optimal asthma management can be so costly that children from disadvantaged communities may be pro¬hibited from obtaining medication or attending the clinic or doctor's office. Because of this, asthma educationprograms should be targeted to undertreated groups who lack adequate access to care, and the programs shouldbe delivered in community settings, such as public schools, churches, or community-based clinics. Linkagesbetween health professionals and community/local government organizations, and parent groups can facilitatethe solution of housing, social, and medical access problems, all too commonly noted by inner-city familieswith children who have asthma. Several community-based prevention programs in AIDS,'26' cardiovasculardisease,'27' and injury prevention (28) have illustrated the effectiveness of community partnership with healthprofessionals in resolving other health problems in disadvantaged populations. However, for asthma care pro¬grams to be successful, it would also be prudent to link these programs to public school systems. Not onlywould this ensure that most children with asthma receive consistent self-management education, but also thatthey receive ongoing monitoring of their asthma symptoms and medication use and receive referrals for regu¬lar primary care for their asthma.

Establishing appropriate asthma self-management skills early in childhood, requires frequent booster ses¬sions throughout a child's school years in order to achieve long-lasting effects into adolescence and adulthood.Incorporating asthma care in the schools by establishing a tracking mechanism for children with asthma, mayensure that each child with asthma receives ongoing asthma management education as well as surveillance ofasthma symptoms, functional status, and medication use. Programs, such as the ones described, require imple¬mentation in the community and linkages with public school systems in order to ensure success.

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Table 1. Summary of Community-Based Asthma Intervention Programs

Author andproject location

Age andeligibility criteria

Description ofintervention Results

Wissow et al,1998 (18)Baltimore,Maryland

Toelle et al1993 (17)Sydney, Australia

Evans et al 1987(20)New York City

Huss et al1994 (22)Baltimore,Maryland andWashington, DC

Eggleston1994Baltimore,Maryland

Preschool childrenEligibility criteria>2 ER visits forasthma within a3 month period

School aged childrenEligibility criteria1. MD diagnosis of

asthma2. Current asthma

medication use3. Current/recent

asthma symptoms

School aged children(8-11 years)

Eligibility criteria1. Enrolled in 3rd,

4th or 5th grade2. At least 3

episodes of asthmain the past year

3. Parental consent

School aged childrenEligibility1. Parent report of

asthma2. Enrollment in

recruited schools

School aged childrenEligibility1. Parent or teacher

report of asthma2. Enrollment in

four elementaryschools in a

specified community

Case management/quality assurance program

1. Assessment & feedbackto primary care provider

2. Telephone contact to family3. Asthma education materials

to parentsDuration: compared two

3-month periods over atwo year period

Educational1. Child/parent educational

sessions, MD consultation2. MD and pharmacist

workshops.3. Nurse and teacher

inservices.Duration: educational

intervention over onemonth period, follow-upat 3 and 6 months postintervention

Educational1. Child attend educational

sessions in schooltaught by healtheducator.

2. Parents received writtenmaterial regardingmanagement skills thechildren were learning.

Duration: educationalsessions over atwo-to-three weekperiod, follow-up at one

year post intervention

Educational and Outreach1. School-based asthma

education program(A+ Asthma curriculum)

2. Community outreach3. Combined educational

and outreach.Duration: one year

intervention with 12 and24 month follow-up

Educational, outreachand surveillance

1. School-based asthmaeducation (A+ Asthmacurriculum)

2. Family support withCHW home visits

3. RN surveillance4. Community partnership and

outreachDuration: one-year

intervention with >two yearfollow-up

Acute care utilizationdecreased by 50%.

Significant increase inFEV, from baseline(1.78 liters, baseline;2.13 liters six monthfollow-up, < .001).Decrease ER visitsover 6 months.

Higher scores on asthmamanagement (p < 0.05),greater self-efficacy ofasthma management skills(p < 0.05), more influenceon parents' asthma manage¬ment decisions (p < 0.05),better grades in school(p = 0.05), and fewer episodesof asthma (p < 0.01) and ofshorter average duration(p < 0.01) compared to thecontrol group. No differences

in the number ofschool absences.

Reduced ER visits,parental lost worktime,restricted activity incombined intervention group.

In preliminary sampleof 19 children, therewas a 90% reduction inabsenteeism and ER visits.

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COMMUNITY-BASED ASTHMA INTERVENTIONS

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Address reprint requests to:Arlene M. Butz, B.S.N., Sc.D.The Johns Hopkins University

School of Nursing1830 East Monument Street

Baltimore, MD 21205

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