The Inner-City Asthma Intervention tool kit: best practices and lessons learned Adrienne Segoris Love and John Spiegel, MPH
Background: Asthma is a major public health problem of increasing concern in the United States. Low-income populations, minorities, and children living in inner cities experience disproportionately higher morbidity and mortality due to asthma. In 1991, the National Institute of Allergy and Infectious Disease at the National Institutes of Health funded the National Cooperative Inner-City Asthma Study (NCICAS), the foundation for the Centers for Disease Control and Prevention (CDC)–funded Inner-City Asthma Intervention (ICAI) on which the tool kit discussed in this article is based. Objective: To summarize the purpose and content of a tool kit for health care organizations that wish to enhance their asthma management efforts and to improve the quality of life of children with asthma and their families. Methods: The ICAI was tailored to the individual child and family through a combination of group and individual activities (core) and follow-up. Information contained in the tool kit is based on project reports, tracking and data collection reports, program oversight activity, and general subject matter knowledge. Results: Although the NCICAS proved successful, moving from a research design to the real world of implementation was difficult. The tool kit draws on the experience of implementation and provides strategies, options, and considerations for health care organizations to use in tailoring project activities. Conclusion: The ICAI demonstrated that committed health care organizations, with trained and experienced individuals, could help empower children and families to manage childhood asthma. The tool kit was designed to share the best practices and lessons learned from the ICAI implementation of the NCICAS protocol at the community level. Ann Allergy Asthma Immunol. 2006;97(Suppl 1):S36–S39.
INTRODUCTION Asthma is a major public health problem of increasing concern in the United States. Low-income populations, minorities, and children living in inner cities experience disproportionately higher morbidity and mortality due to asthma. In 1991, the National Institute of Allergy and Infectious Disease at the National Institutes of Health funded the National Cooperative Inner-City Asthma Study (NCICAS), the foundation for the Centers for Disease Control and Prevention (CDC)–funded Inner-City Asthma Intervention (ICAI). This article summarizes the purpose and content of a tool kit based on the ICAI for health care organizations that are interested in implementing an asthma management and treatment project based on a proven research model. The NCICAS documented the success of the intervention protocol in improving asthma outcomes for inner-city children.1 The CDC–funded ICAI accepted the NCICAS findings about asthma outcome improvement and focused not on health outcomes but rather on how the NCICAS protocol could be implemented in the community.2 The tool kit described in this article was developed by the Alliance of Community Health Plans Foundation (ACHP Alliance of Community Health Plans Foundation, Washington, DC. The project described in this article was supported by contract 200-199500953-0049 from the CDC. The contents are solely the responsibility of the authors and do not necessarily represent the official views of CDC. Received for publication November 4, 2005. Accepted for publication in revised form January 12, 2006.
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Foundation) based on the best practices and the lessons learned from the implementation of the ICAI. The tool kit addresses a variety of topics that range from assisting an organization in assessing the viability of an intervention at their site to the myriad considerations necessary when implementing the intervention. The tool kit provides suggestions and guidance on how to approach the implementation and design of asthma management programs such as the ICAI. For further information on the tool kit, go to www.achp.org and select “ACHP Foundation” and then click “Tool Kit.” The ICAI was a national, multisite pediatric asthma intervention based on the NCICAS. The original NCICAS intervention was shown to reduce asthma morbidity in inner-city children.1 The NCICAS was a multifaceted, multimodal intervention designed to address the wide range of problems families encounter dealing with life stresses while caring for a child with asthma. The NCICAS developers abstracted and used the best elements of previously tested interventions, while adding and expanding other features proven to be successful in assisting families of children with asthma.3 The ICAI was designed to implement the NCICAS model in a broad range of community settings. More than 20 clinical or educational sites were selected by the ACHP Foundation, the organization chosen by the CDC to implement the ICAI. The sites were hospitals, community clinics, health plans, managed care organizations, and other care organizations located in urban areas or that served an economically disadvantaged population.2
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The original developers of the NCICAS posited that master’s degree–level social workers would be best suited to the role of asthma counselor, because their education and experience, coupled with specialized asthma training, would allow for the widest range of counseling, evaluation, and intervention skills necessary to deal with the asthma- and non– asthma-related issues that may arise.4 In both the NCICAS and the subsequent ICAI implementation, asthma counselors were supervised by a project manager, generally a physician or nurse with extensive asthma education, experience, and training. These medical professionals were available to provide asthma counselor training, answer questions, and assist with patient referrals. Asthma counselors used a problem-solving empowerment approach to help families cultivate the skills necessary to partner successfully with physicians, school personnel, family members, caregivers, and others who might affect the lives of the children to help develop appropriate intervention options and promote adherence to a treatment regimen.3 The ICAI intervention was voluntary, and families were asked to participate for 1 year. Like the NCICAS, the ICAI included a baseline evaluation to identify the specific needs of the family. This evaluation was followed by separate group sessions for the adults and the children, an in-person individual session for each family, and individualized follow-up by telephone or face to face. In addition, the ICAI required families to have access to regular, appropriate care (as described in the National Heart, Lung, and Blood Institute guidelines for asthma care) and to have skin testing performed to determine sensitivity to aeroallergens, which may contribute to asthma symptoms.2 (Skin testing for aeroallergens was included as part of the baseline evaluation in the NCICAS.) The ICAI sought to replicate the NCICAS intervention model by providing individually tailored intervention to inner-city families to reduce asthma symptoms in their children. During the 4-year ICAI effort, issues related to program management, patient medical treatment, monitoring, data collection, and general administration arose. Through discussion and collaboration among the sites and ACHP Foundation and CDC management, these concerns were addressed in ways that improved the ICAI implementation. In addition to sharing useful information about implementation of the ICAI, the tool kit could be useful to organizations in evaluation of the results and achievements of other intervention programs. METHODS The tool kit was created after careful analysis of numerous project reports and descriptive information. Program managers from each site shared information about their organization and intervention implementation plans as a part of the proposal process. Information regarding real-world implementation was obtained from monthly conference calls with program managers and asthma counselors, monthly reports, quarterly quantitative reports, year-end qualitative reports, and various data-gathering initiatives with the ACHP Foun-
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dation. The ICAI qualitative data collected and recorded during the implementation provide the foundation for recommendations and tools compiled in the tool kit. RESULTS Content of the Tool Kit The tool kit presents information for organizations that are interested in the viability of implementing an intervention focused on inner-city childhood asthma management. It describes the need for and utility of initiating a pediatric asthma intervention to promote best practices for asthma management in inner-city children and to encourage adherence to recommended interventions. The tool kit documents issues that may affect an organization’s ability to develop and implement a childhood asthma management project. The tool kit addresses the value of buy-in at the organizational and community level, how to market the intervention within the organizational structure and to possible partners, staffing and other resource needs, space requirements, and finally what types of data are needed for program evaluation. The ICAI was conducted in a variety of settings, each of which had inherent strengths and weaknesses. Although diverse, many of the subcontractor sites noted similar challenges. The tool kit describes lessons learned, successes, and failures and shares site-tested best practices. It includes helpful sample documents, suggested resources, a glossary, and a bibliography. Program Organization and Structure The structure of the organization and the interactive relationships between project team members—particularly between the program manager and the asthma counselor—will affect the success of ICAI-like interventions.5,6 The tool kit describes the aspects of the structural and operational relationship of the program manager and asthma counselor that seemed to promote project success. Drawing from that experience, the tool kit presents a range of descriptions, considerations, and suggestions about how to structure these relationships in the most effective way. Organizations interested in pursuing such an implementation can organize their team with these recommendations in mind. Need, Outreach, and Referral The ICAI implementation sites had difficulty assessing the breadth of the need among children and families for asthma management intervention initiatives and the willingness of families to participate in the intervention. Many sites overestimated the number of children and parents who would or could take advantage of the program activities. As a result, sites had to develop broader approaches to recruitment, including building networks that supported referral to the project. Many sites conducted in-service training sessions for non-ICAI staff that may not have known about or fully understood the intervention. Others sought outside affiliations or developed marketing plans that included participation
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in community activities, health fairs, and presentations to parents or school nurses.5 The tool kit describes the various approaches to recruitment and the results achieved by the sites that developed and implemented these approaches. Organizations interested in pursuing a childhood asthma management program will need to define the target population with accuracy and must also document the likely demand for project services. The tool kit contains strategies for more precise identification of target families and provides suggestions for successful approaches to recruit and enroll clients. In addition, the tool kit addresses how to estimate staffing and space requirements based on program demands, how to coordinate better with social service providers to maximize the provision of service, and how to determine whether the benefits of enrolling a family outweigh the costs of the intervention. Data Collection for Evaluation and Sustainability Organizations that seek to implement intervention programs must have the ability to determine the costs and benefits of the specific program. Changes in health status and health services use, as well as programmatic and administrative outcomes, should be quantified as thoroughly as possible. The ICAI was designed as a replication project, and a comprehensive systematic evaluative component was not incorporated into the project. As a result, evaluation data were difficult to obtain at the end of the project. This lack of data made it difficult for sites to document the overall impact of the intervention and also limited their ability to market the project to decision makers and potential funders interested in supporting effective interventions.7 The tool kit presents examples of ICAI site experience and suggests options for development of evaluation strategies before project implementation begins. Options range from enlisting the help of in-house evaluation experts to external contracting for assistance. Strategies for collecting administrative and personal health information data present different challenges and requirements. The tool kit addresses the importance of preimplementation planning for evaluation and describes the potential uses of “results” data in decisions about continuing the program. Cultural Competency The target population for the ICAI was inner-city families of children, aged 5 to 11 years, with moderate or severe persistent asthma who demonstrated difficulty managing their child’s asthma. The call for applications specifically targeted minority families.2 Data on enrollee ethnicity and language were not systematically collected as a part of the project, so it is not possible to describe the study population’s ethnic and language characteristics accurately. However, through formal and informal communication with the sites, project staff learned that cultural issues affected the project’s success. Language ability, sex, and ethnicity of the asthma counselor were significant issues in the ICAI.6
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The ICAI sites with a large number of Spanish-speaking clients generally selected bilingual asthma counselors and/or support staff. Sites that had a small population of monolingual Spanish-speaking clients and that did not have direct access to translation services struggled with language barriers and found recruiting and retaining clients to be difficult (ACHP Foundation, selected site visit reports, January 1, 2003, to January 31, 2004). The tool kit describes these and other cultural competency issues in greater detail and presents suggested approaches based on the ICAI site experience in these areas. Hiring, retaining, and improving the cultural competence of project staff—particularly those interacting with ethnically diverse clients—are critical to the success of any initiative undertaken. DISCUSSION Despite the variety of organizational settings in which the ICAI was implemented, the elements of successful implementation are generally consistent. In transition from a research protocol to real-world implementation, the intervention had to be adapted to the unique circumstances at each project site to serve families best. Although the CDC and ACHP Foundation worked to ensure that site implementation was as consistent as possible with the NCICAS protocol, numerous changes were made to give subcontractor sites the opportunity to conduct a practical, successful intervention and help the families to care for their child’s asthma. The tool kit provides the basic organizational, structural, procedural, and financial considerations needed for planning and implementation of programs that will ultimately assist families caring for a child with asthma. A major focus of the ICAI program was to empower families to collaborate in the care and management of the child’s asthma. The results of the ICAI have been converted into helpful suggestions in a number of important areas. The tool kit should be useful to organizations interested in implementing many different kinds of pediatric asthma management programs. ACKNOWLEDGMENTS We acknowledge Christine A. Lucas, MSW, MPH, and Tracy Cooper, LCSW, AE-C, EI-SW, C-ACYFSW. REFERENCES 1. Evans R, Gergen PJ, Mitchell H, et al. A randomized clinical trial to reduce asthma morbidity among inner-city children: results of the National Cooperative Inner-City Asthma Study. J Pediatr. 1999;135:332–338. 2. Alliance of Community Health Plans Foundation. Asthma intervention for inner-city children. Commerce Business Daily. November 2000. 3. Mortimer KM, Mitchell HE. A Guide for Helping Children With Asthma Based on the Program Researched, Developed and Implemented by the National Cooperative Inner-City Asthma Study. Bethesda, MD: National Institutes of Allergy and Infectious Diseases. 4. Mitchell H, Senturia Y, Gergen P, et al. Design and methods of
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the National Cooperative Inner-City Asthma Study. Pediatr Pulmonol. 1997;24:237–252. 5. Summary of proceedings. In: Program and abstracts of the Second Annual ICAI Meeting; Dallas, TX; September 17–19, 2002. 6. Summary of proceedings. In: Program and abstracts of the Third Annual ICAI Meeting; St Louis, MO; July 28 –31, 2003. 7. Summary of proceedings. In: Program and abstracts of the Fourth Annual ICAI Meeting; New Orleans, LA; June 21–23, 2004.
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Requests for reprints should be addressed to: John Spiegel, MPH Alliance of Community Health Plans Foundation 1729 H St NW Suite 400 Washington, DC 20006 E-mail:
[email protected]
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