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SPECIAL ARTICLE |
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* From the University of California-Los Angeles/RAND Program on Latino Children with Asthma: RAND Health, Santa Monica, California
Division of General Pediatrics, University of California-Los Angeles Department of Pediatrics, Los Angeles, California
Center for Health Services Research and Policy, George Washington University School of Public Health and Health Services, Washington, DC
|| Allergy Research Foundation, Los Angeles, California
¶ Los Angeles County Children and Families First Commission, Los Angeles, California
# White Mountain Research Associates, LLC, Plainsboro, New Jersey
** Health Management Associates, Lansing, Michigan
Anne Arundel County Department of Health, Annapolis, Maryland
Asthma and Allergic Diseases Center, University of Virginia
|||| University of Michigan School of Public Health, Ann Arbor, Michigan
¶¶ The Center for Healthcare Studies, and the Division of General Medicine, Department of Medicine, Northwestern University Medical School, Chicago, Illinois, and the Midwest Center for Health Services and Policy Research, Hines VA Medical Center, Hines, Illinois
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ABSTRACT |
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 TOP ABSTRACT CURRENT STATUS OF CHILDHOOD...OBJECTIVES OF THIS NATIONAL...METHODSRESULTS I: CONCEPTUAL FRAMEWORK...RESULTS II: SPECIFIC POLICY...COMMENTREFERENCES |
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Design/Methods. A nominal group process with nationally recognized experts and leaders (referred to as "the committee") in childhood asthma.
Results. The committee identified 11 policy recommendations (numbered in order below) in 2 broad categories: Improving Health Care Delivery and Financing, and Strengthening the Public Health Infrastructure. Recommendations regarding Improving Health Care Delivery and Financing include the development and implementation of quality-of-care standards in 1) primary care, 2) self-management education, and 3) case-management interventions, and the expansion of insurance coverage and benefit design by 4) extending continuous health insurance coverage for all children, 5) developing model insurance benefits packages for essential childhood asthma services, and 6) educating health care purchasers in how to use them. Recommendations for Strengthening the Public Health Infrastructure include public funding of asthma services that fall outside the insurance system through establishing 7) public health grants to foster asthma-friendly communities and 8) school-based asthma initiatives. 9) Launching a national asthma public education campaign, 10) developing a national asthma surveillance system, and 11) establishing a national agenda for asthma prevention research, with an emphasis on epidemiologic and behavioral sciences, are also recommended.
Conclusions. Implementing these recommendations will require coordination of activities at the national, state, and local community level, and within and outside the health care delivery system. With a further commitment of national and local resources, implementation of these recommendations will likely lead to improved child and family asthma outcomes in the United States. childhood asthma, health care policy, health care services.
Abbreviations: NAEPP, National Asthma Education and Prevention Program • SCHIP, State Children’s Health Insurance Program
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CURRENT STATUS OF CHILDHOOD ASTHMA IN THE UNITED STATES |
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TOPABSTRACTCURRENT STATUS OF CHILDHOOD...OBJECTIVES OF THIS NATIONAL...METHODSRESULTS I: CONCEPTUAL FRAMEWORK...RESULTS II: SPECIFIC POLICY...COMMENTREFERENCES |
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Paradoxically, the asthma epidemic coincides with significant improvements in the medical treatments to manage the disease: The appropriate use of new preventive medications allows almost all children with asthma to lead normal lives without experiencing significant symptoms. There are several reasons for this paradox.
First, although primary care delivered by a properly trained asthma care professional can control the exacerbations of childhood asthma and prevent hospitalizations,5 not enough is known about how to prevent or alter the course of the disease in the first place. Scientific evidence points toward a variety of risk factors, including a genetic predisposition, environmental exposures, poverty, and inadequate health care services.5–10 However, neither the precise effect of each of these factors nor their interaction is known.
Second, because asthma is a public health problem spurred on by multiple causes, effective interventions seem to necessitate an investment in social and community resources that extends well beyond medical care and into the realm of behavioral and lifestyle modification, educational services, housing, environmental reforms, and other community services. For example, interventions to improve quality of health care services11–24 (eg, patient education and access to a knowledgeable provider and the necessary medications and equipment) need to be coupled with environmental control of the indoor exposures that have been shown to worsen asthma10 (eg, tobacco smoke, furry pets, dust mites, and cockroaches). Thus, controlling asthma implicates local school systems, state and local housing authorities, environmental agencies, and other parts of the government and social services structure that surrounds children and their families. Alone, none of these entities has the authority or the sufficient resources to institute safeguards, health education, and environmental improvements needed to reduce the risk of asthma.
The 106th Congress recognized childhood asthma as a national health problem requiring multidimensional policy actions within and among the social welfare and health systems that influence children’s lives. The asthma-related provisions of the Children’s Health Act of 2000 amended the Public Health Services Act to expand and strengthen national asthma services, prevention activities, and compilation of data, and called for the National Heart Lung and Blood Institute through the National Asthma Education Prevention Program to submit recommendations to Congress for coordination of Federal asthma activities.25
Although the Children’s Health Act of 2000 is an important first step toward national asthma policy, appropriate funding and implementation of this Act are critical for its impact. The imperative to develop national asthma policy responses, such as the Act, is strong: Reducing asthma would not only improve the quality of life for children and their families, it would also be likely to produce cost savings among health insurers and patients with severe disease.26
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OBJECTIVES OF THIS NATIONAL STUDY |
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TOPABSTRACTCURRENT STATUS OF CHILDHOOD...OBJECTIVES OF THIS NATIONAL...METHODSRESULTS I: CONCEPTUAL FRAMEWORK...RESULTS II: SPECIFIC POLICY...COMMENTREFERENCES |
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It is this last policy component, aimed at developing a specific set of policy recommendations, with implementation and funding options for each, that is summarized in this article. Two separate RAND reports describe in more detail the policy results and implications27 and the methods used.28
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METHODS |
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TOPABSTRACTCURRENT STATUS OF CHILDHOOD...OBJECTIVES OF THIS NATIONAL...METHODSRESULTS I: CONCEPTUAL FRAMEWORK...RESULTS II: SPECIFIC POLICY...COMMENTREFERENCES |
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Using a predefined algorithm, RAND staff identified those 17 recommendations with mean scores in the top 20, and which also were in the top two-thirds on all 5 criteria. These results were distributed to the participants before the face-to-face expert committee meeting. The objective of the face-to-face meeting was to determine the "top 10" policy recommendations. Using the scores for each recommendation as a guide, the committee arrived, by consensus, at 21 recommendations. To further reduce this list, each committee member voted for 10 recommendations. Eliminating recommendations with fewer than 3 votes and combining related recommendations yielded a final list of 11 policy recommendations. To develop a policy framework, committee members discussed implementation and funding options for each recommendation.
After the meeting, RAND staff drafted a final set of policy recommendations, which were reviewed and approved by committee members and sent for comment to 28 external organizations. Based on this feedback, suggestions that involved substantive changes from the agreement reached at the meeting were reviewed in detail, with committee members agreeing unanimously with 10 of the 15 proposed changes. Of the remaining 5 proposed changes, 4 were supported by 75% of the committee, and a unanimous compromise was reached on the last one.
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RESULTS I: CONCEPTUAL FRAMEWORK FOR ASTHMA POLICIES |
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TOPABSTRACTCURRENT STATUS OF CHILDHOOD...OBJECTIVES OF THIS NATIONAL...METHODSRESULTS I: CONCEPTUAL FRAMEWORK...RESULTS II: SPECIFIC POLICY...COMMENTREFERENCES |
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Overarching Policy Objective: Promote Asthma-Friendly Communities Nationwide
The overarching policy objective is to promote the development and maintenance of asthma-friendly communities. In an asthma-friendly community, children with asthma are quickly diagnosed and receive appropriate and ongoing treatment; health care, school, and social agencies are prepared to meet the needs of children with asthma and their families; and children are safe from physical and social environmental risks that exacerbate asthma.
Policy Goal 1: Improve Access to and Quality of Asthma Health Care Services
Because appropriate medical care can control asthma symptoms,5,31 a child’s capacity to lead a normal life is highly related to the accessibility of high-quality health services. Having access to health services does not necessarily ensure that care is of optimal quality. Thus, improving both access to and quality of services should be the goal of a comprehensive effort.
Policy Goal 2: Improve Knowledge About Asthma Among Affected Individuals and the General Public
Scientific evidence and clinical experience document both the effectiveness and the necessity of patient self-management strategies to control asthma.5,31–33 Increasing public awareness of asthma would 1) help reinforce an understanding on the part of the health professional community of the importance of patient-focused educational efforts, 2) assist families and children with asthma who are not currently receiving appropriate medical attention, and 3) support advocacy efforts aimed at broader policy reforms. Improving the general public’s understanding of asthma could also increase chances of early referral and minimize the risks posed by potentially life-threatening situations when they occur.33
Policy Goal 3: Ensure Asthma-Friendly Schools
A school’s asthma-friendliness refers to its capacity to promote quality of life for children with asthma, through policies and facilities that support and encourage adequate knowledge, time, and commitment of school staff to meet the needs of children with asthma during school hours and in after-school facilities.34 Schools are a natural community hub for children and families, and thus a good base for asthma education and referral to health care and social services.
Policy Goal 4: Promote Asthma-Safe Home Environments
Both scientific evidence and expert consensus suggest that exposure to indoor allergens and irritants can exacerbate asthma symptoms among sensitive individuals and may play a role in the development of asthma.10,35 Policies that promote asthma-safe home environments would involve eliminating or controlling asthma-provoking allergens and irritants through collaboration among families, housing authorities, and payers.
Policy Goal 5: Encourage Innovation in Asthma Prevention and Management
The capacity to improve the treatment, management, and control of asthma will require advancing medical knowledge about asthma treatment and evaluating new strategies—such as environmental modification, immunologic intervention, and lifestyle changes—for preventing and managing symptoms. More research on quality improvement and other strategies to improve health care delivery systems is also necessary.
Policy Goal 6: Reduce Socioeconomic Disparities in Childhood Asthma Outcomes
The greater burden of the asthma epidemic among low-income, minority, and other underserved populations is extensively documented and is a widely recognized national public health problem.6–8,36–38 Low-income and minority children are less likely to have the resources to adequately address the impact of illness, and are more likely to reside in communities with environmental risk factors that may exacerbate asthma.39 In addition, some 10 million children remain uninsured and may not receive needed health care services. Despite improvements in insurance coverage in recent years,40 there are disparities across different types of insurance coverage for insured children as well. Public policies need to pay attention to the special needs of these populations; otherwise, the gap in asthma care outcomes associated with socioeconomic disparities will not be addressed and may even widen.
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RESULTS II: SPECIFIC POLICY RECOMMENDATIONS |
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TOPABSTRACTCURRENT STATUS OF CHILDHOOD...OBJECTIVES OF THIS NATIONAL...METHODSRESULTS I: CONCEPTUAL FRAMEWORK...RESULTS II: SPECIFIC POLICY...COMMENTREFERENCES |
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Improving Health Care Delivery and Financing
These recommendations are designed to improve the quality of asthma-related health care services and to increase access to these services through expansions in insurance coverage and improvements in the benefit structures of public and private insurance.
Promoting Quality of Care for Key Childhood Asthma Care Services
In light of the highly decentralized nature of the American health care system and the challenges thus inherent in any effort to improve the quality of health care, the 3 recommendations in this subcategory focus on 3 key areas of asthma care: primary care, self-management education, and targeted case-management. Table 1 summarizes the recommendations in this subcategory and their target audiences, and it provides examples of implementation and financing options for each.
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Recommendation #2: Teach All Children With Persistent Asthma a Specific Set of Self-Management Skills
Educating patients about their disease can improve their ability to manage the disease and prevent complications that lead to hospitalizations and emergency department visits. This recommendation includes a series of activities to develop and implement a specific set of patient-education performance measures based on the NAEPP’s guidelines for self-management education.
Recommendation #3: Provide Case-Management to High-Risk Children
Asthma case-management is a comprehensive set of services, provided by teams of medical professionals and social work staff that includes intensive tracking, coordinated care, and follow-up. Because case-management services are expensive, this recommendation focuses their use on high-risk children.
Expanding Coverage and Improving Benefits Design
The implementation and financing options for each of the 3 recommendations in this subcategory are presented in Table 2
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Recommendation #5: Develop Model Benefit Packages for Essential Childhood Asthma Services
Having insurance is not, by itself, sufficient. Coverage should be for the range of services included in accepted quality guidelines for asthma care, and cost-sharing through premiums, deductibles, and coinsurance must be modest enough to avoid deterring access to care.43 However, certain childhood asthma care services essential for proper treatment may not be routinely covered by private health insurance plans and may not be covered under state SCHIP plans maintained separately from Medicaid.
Recommendation #6: Educate Health Care Purchasers About Asthma Benefits
Health care purchasers can use their purchasing power to affect health care delivery patterns. The rationale for this recommendation is to influence purchasers’ use of the contracting process to improve benefit coverage and/or require compliance with quality of care performance measures.
Strengthening the Public Health Infrastructure
These recommendations are directed at the government agencies responsible for administering and funding public health functions that both support and supplement the health care delivery system. As a set, they represent the kind of reforms that are necessary to fight the asthma epidemic outside the clinical setting.
Public Funding of Asthma-Related Community and Health Services Not Currently Funded by Insurance System
The recommendations in this subcategory pertain to those personal and environmental health services that are essential to improving asthma outcomes but that are not feasibly financed through third-party insurance, either because they are not considered insurable services or because they are for individuals with no insurance coverage. These services include, for example, environmental health interventions that control exposure to asthma-provoking agents and asthma management programs in schools. Table 3 presents the target audiences and implementation and funding options for the 2 recommendations in this subcategory:
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Recommendation #8: Promote Asthma-Friendly Schools and School-Based Asthma Programs
Although children spend a significant amount of time in school, many barriers exist in this setting for the recognition and treatment of asthma. This recommendation aims to improve this situation by establishing performance measures for comprehensive and coordinated school health programs that are based on the recommendations of the NAEPP.
Increasing Public Awareness and Knowledge of Asthma
The recommendation in this subcategory, summarized in Table 4, addresses the need for broad public education aimed at improving public awareness and support of asthma treatment and prevention efforts.
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Improving Surveillance and Prevention Research Efforts
Table 5 presents the implementation and funding options for the 2 recommendations in this subcategory:
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Recommendation #11: Develop and Implement a National Agenda for Asthma Prevention Research
This recommendation addresses the need to improve the research evidence on which primary and secondary preventive interventions are based. It stresses, specifically, the resources necessary for research to identify the possible environmental, genetic, lifestyle (including diet and physical activity), and health care system factors associated with increases in asthma prevalence and morbidity.
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COMMENT |
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TOPABSTRACTCURRENT STATUS OF CHILDHOOD...OBJECTIVES OF THIS NATIONAL...METHODSRESULTS I: CONCEPTUAL FRAMEWORK...RESULTS II: SPECIFIC POLICY...COMMENTREFERENCES |
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This comprehensive approach to asthma policy reform faces many hurdles. The magnitude of the problem represents a challenge to the whole pediatric health care delivery and financing system. The complexity of the problem requires a level of focus and effort that has not occurred to date. Achieving coordination among various systems—the medical care system, public housing agencies, school systems, departments of recreation, and state environmental agencies—is tough when collaboration among even 2 agencies is difficult. Securing the involvement of multiple agencies in communities takes concerted leadership and political will.
Political barriers can include limited interest in the problem, with competing spending and policymaking priorities in difficult fiscal times, and the inherent difficulty of implementing policies that, for instance, attempt to balance the need for economic development and environmental justice in communities. Thus, efforts to devise integrated, cross-system solutions to fundamental health threats such as asthma can quickly become overwhelmed by the political complexities that arise whenever an attempt is made to move a set of multidimensional public policy reforms through a tangle of legislative committees. For example, the Children’s Health Act of 2000, which addressed the nation’s asthma crisis by promoting additional research and collaboration among health agencies, was somewhat limited in its conception and funding.
These challenges are not unique to asthma. As with other multidimensional public health problems (in both its causes and remedies), effective solutions depend on the extent to which policymakers can design and implement multiphased policy reforms that go beyond medical care and reach the broader physical and social environment in which children live. Repeated efforts for more than a century to address not only the quality and accessibility of medical care but, more fundamentally, the social determinants of health have faced political indifference or resistance, regardless of whether the underlying challenge was infant mortality, childhood injuries, or other child health problems associated with factors in the home, community, and/or the environment in which children live.44,45
The emerging grassroots support and community organization around asthma nationwide—such as Zap Asthma in Atlanta, the Robert Wood Johnson Foundation’s Allies Against Asthma demonstration projects, and the community-based asthma coalitions supported by the National Heart Lung and Blood Institute and the Centers for Disease Control and Prevention—demonstrate an increasing sense of urgency around the issues of childhood asthma. Public insistence on a solution may act as a powerful political lever in the case of asthma, because the condition cuts across society and affects children in all social situations. Furthermore, childhood asthma is a desirable issue for policymakers because good public policy can increase school attendance, educational attainment, and promote the cost-effective use of societal resources.
At face value, the Blueprint presents a utopian picture of the public and private policies that are necessary to improve asthma outcomes for all children in the United States. Recognizing this, the intent of the Blueprint is to provide a framework that can help integrate and monitor an incremental process toward long-term, large policy reforms. In framing the policy questions and developing a policy framework, the Blueprint attempts to "put flesh on the bone" of the vague concepts of collaboration and cooperation through broad, yet reasonably clear and targeted, recommendations that grow out of a unique and methodologically rigorous consensus-development effort. The Blueprint can be used to identify current gaps and/or areas of possible collaboration and synergy among existing institutions, organizations, programs, and financing vehicles.
National dissemination and discussion of the recommendations put forth here are a key first step in meeting this goal. Recognizing that nonclinical determinants are important contributors to asthma, the National Asthma Education and Prevention Program had previously formed a task force that provided recommendations on issues related to the financing of asthma care.46 Following its tradition of collaborative public and private asthma leadership, the NAEPP recently created a Policy Workgroup to disseminate the Blueprint and to facilitate a coordinated response to its recommendations among the national asthma organizations that are part of its membership. The intent of the new Policy Workgroup is to generate and maintain momentum toward the collaborative and multifaceted policy approaches presented here. The NAEPP, with 40 member organizations that span the range of public and private interest in asthma, is well positioned to be successful in this task. However, to achieve this goal, it would need to secure resources for this additional role. In addition, the NAEPP would need to solicit input from organizations that are important target audiences for the Blueprint—such as national quality monitoring and insurance organizations—that are not currently included in its membership.
The Blueprint also will be disseminated to other forums and audiences. Although the NAEPP is currently the national organization most suitable for immediate dissemination and discussion of the Blueprint, no single organization or group alone can provide the kind of leadership necessary to promote and implement the policy reforms described here. Moreover, the kind of policy reforms outlined require more than organizational responses. They are a call for leadership and coordination not only at the highest legislative and executive levels of government and policy, but also at the local community level, where grassroots efforts are essential for both advocacy for and implementation of the necessary reforms.
Moving toward an environment in which asthma is both detected and managed efficiently in appropriate settings and with an appropriate level of quality has important implications for families, child health care providers, and insurers. For families and children, increased efforts to control asthma can yield not only healthier children but improved family functioning, workplace productivity, and overall family well-being. As with any serious health condition, asthma can rapidly deplete a family’s financial and emotional resources. Reducing and controlling asthma thus can be conceived as an intervention to strengthen families.
Active involvement by child health care providers is also key. Efforts on the part of child health care professionals to reduce or ameliorate the factors that contribute to asthma ensures a greater level of focus and attention by policymakers and the potential for greater investment of resources in broadly conceived asthma-reduction initiatives. Furthermore, to the extent that controlling asthma requires strengthening child health care practice standards in asthma detection, treatment, and management, highly visible involvement by the leading professional organizations, as well as by individual provider community leaders, is essential to the creation of the type of environment in which improvement in the standard of care occurs. The committee hopes that professional organizations will actively review these recommendations and consider how they can be incorporated into child health care practice and broader policy endeavors. Of particular importance will be professional organization activities aimed at increasing the ties between individual medical care and broader community interventions through schools, public health agencies, and other community endeavors.
Finally, improving asthma care has implications for insurers. A number of the committee’s recommendations underscore the gaps that can exist between the limits of health insurance and the nature, extent, and level of health care that are necessary to treat and manage a serious medical condition. A substantial proportion of private insurance is built on a model of time-limited, narrowly defined medical treatments for specific illnesses and injuries from which a full recovery can occur.47 But for asthma, effective medical treatment may necessitate a wide array of interventions that encompass medical care as strictly defined, as well as patient education, certain types of supplies and equipment, and the provision of services financed in unconventional settings, such as schools and community settings. The Medicaid program historically has been quite flexible in its definition of what constitutes medical assistance, what medical assistance is necessary, and the settings in which necessary care may be furnished and paid for. The same cannot be said for most private insurance. As a result, significant aspects of proper childhood asthma care may go seriously underfinanced or completely unfinanced without supplemental resources.
No health condition more than asthma illustrates the extent to which the successful control and prevention of illness depends on the existence of a joint enterprise between public health and individual medical care. Nor is there a condition that better underscores the degree to which the quality and accessibility of the intervention depends on a multifaceted approach that requires active involvement on the part of the many agencies, institutions, community organizations, and others that affect the lives of children, in both the public and private sector.
In the end, change will come incrementally, through sustained effort. This in no way diminishes the importance of a policy blueprint, because to make sense, incremental changes must be part of a larger policy reform design. Thus, even where progress seems to be slow, an ongoing commitment to continuous policy formulation (and reformulation as conditions change) remains essential to success.
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ACKNOWLEDGMENTS |
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We gratefully acknowledge the many contributions Stephen Redd, MD, Chief, Air Pollution and Respiratory Health Branch, Centers for Disease Control and Prevention, made to this study as Co-Chair of the National Expert Committee. Dr Lara would also like to personally thank Richard Greenberg, Linda Escalante, and Robert Brook for their unwavering support of this and other projects. This manuscript is dedicated to all children with asthma and their families.
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FOOTNOTES |
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Reprint requests to (M.L.) RAND Health, 1700 Main St, Box 2138, Santa Monica, CA 90407-2138. E-mail: lara{at}rand.org
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REFERENCES |
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TOPABSTRACTCURRENT STATUS OF CHILDHOOD...OBJECTIVES OF THIS NATIONAL...METHODSRESULTS I: CONCEPTUAL FRAMEWORK...RESULTS II: SPECIFIC POLICY...COMMENTREFERENCES |
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