1

Summary

Chronic diseases have emerged in recent decades as the major cluster of health concerns for the American people. A chronic disease or illness, in general terms, is a condition that is slow in progression, long in duration, and void of spontaneous resolution, and it often limits the function, productivity, and quality of life of someone who lives with it.1 According to the Centers for Disease Control and Prevention (CDC), in the United States, chronic diseases currently account for 70 percent of all deaths (Kung et al., 2008; Wu and Green, 2000). Close to 48 million Americans report a disability related to a chronic illness (CDC, 2009).

In the past few centuries, extraordinary advances in developed countries in medicine and public health, as well as economic growth leading to more widely accessible social welfare programs, have changed the chronic disease landscape dramatically. Hygienic and sanitary advances have prevented many previously common infectious diseases. Immunizations and clinical and community interventions have substantially controlled many past causes of chronic illness, such as tuberculosis and polio. Pharmacotherapy has enabled many persons with chronic mental illness to live in their communities. Chronic cardiovascular diseases have become less disabling in many important ways. Therapeutic approaches have improved the function

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1For the purpose of this report, the committee has chosen to use the term “chronic disease(s)” when referring to the population at large; communities; groups of illnesses or conditions; or when the term properly describes a program, service, and/or an agency; or is derived from cited research. The term “chronic illness(es)” is used when referring to or closely associated with individuals or families living with one or more medical conditions.



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1 Summary Chronic diseases have emerged in recent decades as the major cluster of health concerns for the American people. A chronic disease or illness, in general terms, is a condition that is slow in progression, long in dura- tion, and void of spontaneous resolution, and it often limits the function, productivity, and quality of life of someone who lives with it.1 According to the Centers for Disease Control and Prevention (CDC), in the United States, chronic diseases currently account for 70 percent of all deaths (Kung et al., 2008; Wu and Green, 2000). Close to 48 million Americans report a disability related to a chronic illness (CDC, 2009). In the past few centuries, extraordinary advances in developed coun- tries in medicine and public health, as well as economic growth leading to more widely accessible social welfare programs, have changed the chronic disease landscape dramatically. Hygienic and sanitary advances have pre- vented many previously common infectious diseases. Immunizations and clinical and community interventions have substantially controlled many past causes of chronic illness, such as tuberculosis and polio. Pharmacother- apy has enabled many persons with chronic mental illness to live in their communities. Chronic cardiovascular diseases have become less disabling in many important ways. Therapeutic approaches have improved the function 1 For the purpose of this report, the committee has chosen to use the term “chronic disease(s)” when referring to the population at large; communities; groups of illnesses or conditions; or when the term properly describes a program, service, and/or an agency; or is derived from cited research. The term “chronic illness(es)” is used when referring to or closely associated with individuals or families living with one or more medical conditions. 1

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2 LIVING WELL WITH CHRONIC ILLNESS and overall health for some persons with chronic illness through advances in corrective surgery, new approaches in analgesia, better rehabilitation and physical and occupational therapy, improved nutrition management, and adaptation of home and community environments for functionally impaired persons. However, these advances have been compromised by parallel increases in physical inactivity, unhealthful eating, obesity, tobacco use, and other chronic disease risk factors. Today, more than one in four Americans has multiple (two or more) chronic conditions (MCCs), and the prevalence and burden of chronic illness among the elderly and racial and ethnic minorities are notably disproportionate. Chronic disease has now emerged as a major public health problem, and it threatens not only population health but also social and economic welfare. Cardiovascular disease, many cancers, stroke, and chronic lung disease are the most common causes of death in America. But there are also other chronic diseases, such as arthritis, asthma, depression, and epilepsy, which have less substantial contributions to mortality but can severely diminish the health-related quality of life of the individuals who live with them, and effective disease prevention programs are not well developed. Chronic illnesses not only impact the social and economic lives of mil- lions of Americans and their families but also are a major contributor to health care costs. The medical care costs of people with chronic illnesses represent 75 percent of the $2 trillion the United States spends annually on health care (Kaiser Family Foundation, 2010). By 2030, the global economic burden of noncommunicable chronic diseases is estimated to be $47 trillion (Bloom et al., 2011). In 2010, CDC and the Arthritis Foundation sought assistance from the Institute of Medicine (IOM) to identify the population-based public health actions that can help reduce disability and improve functioning and qual- ity of life among individuals who are at high risk of developing a chronic illness and those with one or more chronic illnesses. The Statement of Task (Box S-1) suggested the following diseases for the committee to consider: heart disease and stroke, diabetes, arthritis, depression, respiratory problems (asthma, chronic obstructive pulmonary disease [COPD]), chronic neurological conditions, and cancer. These dis- eases or categories of disease were not intended as a prescriptive set of diseases to include in the report. In fact, the committee was advised by the sponsors of this study not to focus on the common high-mortality diseases, but rather consider diseases that have the potential to cause or that actually cause functional limitations and/or disabilities. This guidance thus allowed the committee to consider all chronic diseases in the context of living well. With respect to primary prevention, the committee was advised to consider prevention only among individuals with high-risk factors (e.g., prediabetes).

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3 SUMMARY BOX S-1 Statement of Task The Statement of Task for this consensus study provides that the IOM establish a committee to examine the nonfatal burden of chronic disease and the implica- tions for population-based public health action. Questions to be considered by the committee for persons with single as well as multiple chronic diseases include 1. What consequences of chronic diseases are most important (criteria to be decided and justified by the committee) to the nation’s health and economic well-being? 2. Which chronic diseases should be the focus of public health efforts to reduce disability and improve functioning and quality of life? 3. Which populations need to be the focus of interventions to reduce the consequences of chronic disease including the burden of disability, loss of productivity and functioning, health care costs, and reduced quality of life? 4. Which population-based interventions can help achieve outcomes that maintain or improve quality of life, functioning, and disability? • hat is the evidence on effectiveness of interventions on these W outcomes? • o what extent do the interventions that address these outcomes also T affect clinical outcomes? • o what extent can policy, environmental, and systems change achieve T these outcomes? 5. How can public health surveillance be used to inform public policy deci- sions to minimize adverse life impacts? 6. What policy priorities could advance efforts to improve life impacts of chronic disease? 7. What is the role of primary prevention (for those at highest risk), second- ary, and tertiary prevention of chronic disease in reducing or minimizing life impacts (e.g., preventing diabetes in pre-diabetics, preventing incidence of disability in people with arthritis, preventing recurrence of cancer, managing complications of cardiovascular disease)? Chronic diseases related to congenital disorders, infectious diseases, sub- stance abuse, and childhood conditions are not the focus of the study. CONCEPTUAL FRAMEWORKS Chronic disease is a public health as well as a clinical problem. There- fore, a population health perspective for developing strategies, interventions, and policies to combat it is critical. A population perspective considers how individuals’ genes, biology, and behaviors interact with the social, cultural, and physical environment around them to influence health outcomes for the

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4 LIVING WELL WITH CHRONIC ILLNESS entire population. It is this perspective that informed the development and use of four frameworks in this study. First, building on prior frameworks, is an integrated framework on determinants of health, health outcomes, and policy; the interactions in this framework help identify which strategies are likely to offer the greatest promise to improve health for individuals living with chronic illness. This integrated framework addresses a principal aim of interventions to reduce chronic illness morbidity: helping each affected person and the population as a whole to “live well” regardless of the illness in question or an individ- ual’s present state of disablement. For this study, the concept of living well reflects the best achievable state of health that encompasses all dimensions of physical, mental, and social well-being. Second, a living-well framework was developed to inform the consid- eration of policies and the allocation of resources about the interactions among individual, behavioral, social, and environmental characteristics that shape important problems related to chronic illness. Third, a framework depicting a pyramid of layered intervention strate- gies to promote living well presents the nature and scope of public health policies and other interventions. The pyramid attempts to frame different intervention strategies not only in terms of their target level (i.e., population- wide versus individually based) but also in terms of the relative intensity of a strategy to meet the needs of the people who shoulder the greatest burden of nonfatal chronic illness. Fourth, a framework is used to describe the great variation in the causes, onset, clinical patterns, and outcomes of specific chronic diseases. CHRONIC ILLNESSES AND THE PEOPLE WHO LIVE WITH THEM Chronic illnesses can be characterized by stages of clinical severity, patterns of symptoms, and anticipated courses of progression. The stage of clinical severity (i.e., early, moderate, late) for any chronic illness has the largest impact on health and social function, including the symptoms, degree of impairment and/or disability, level of self-management, and bur- den to caregivers, family, and significant others. The burden of chronic illness is often compounded by MCCs, or comorbidities, that contribute to worse outcomes, multiple organ systems involvement, complex treatment approaches, and decreased adherence to treatment. In addition, the adverse effects of clinical treatment and secondary conditions contribute to the development of MCCs and disability. The prevalence of MCCs increases substantially among adults over age 65. Although the relationship between aging and chronic illness is complex and variable, the difference between older and younger persons must be considered in population-based approaches to living well with chronic

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5 SUMMARY illness. Similarly, to address the disproportionate prevalence of chronic illness among some racial and ethnic groups, the social determinants of health as the context for a population-based approach to living well must be considered. The question “Which chronic disease should be the focus of public health efforts to reduce disability and improve functioning and quality of life?” is difficult to answer because of the many illnesses from which to choose and many forms of suffering and disability. Fundamentally, the determination of priorities for public health intervention begins with the population burden of disease and preventability (Sainfort and Remington, 1995). Other considerations include the perceptions of urgency around the problem; the severity of the problem; the potential for economic loss; the impact on others; effectiveness, proprietorship, economics, acceptability, and the legality of solutions; and the availability of resources (Vilnius and Dandoy, 1990). The very considerable costs that chronic diseases impose on society are due to many factors, including their high—and, in many cases, apparently increasing—prevalence; the aging of the population; advances in treatment that help sustain many individuals; their occurrence across the life course; and the highly disabling nature of many chronic illnesses, especially when inadequately treated. POLICY Numerous health and other public policies have an impact on the well-being of high-risk populations living with chronic illness. These social policies have proven critical to maintaining function and independence for chronically ill populations that are most disadvantaged in terms of income and/or disability. Many of these policies and laws—such as clean indoor air laws and support for smoking cessation interventions—prevent disease in the general population and help facilitate function as well as deter disease progression in those who are already chronically ill. Recently passed fed- eral health reform, the Patient Protection and Affordable Care Act (ACA), represents the most significant changes to health care policy since the estab- lishment of Medicare and Medicaid. Some provisions targeted to improv- ing health care delivery and population health in the ACA are particularly relevant to the well-being of those with chronic illness. Federal, state, and local government policies have important impacts on the population’s health status, including those living with a chronic illness. To promote synergistic improvements in public policies that have the potential to impact health, the Health in All Policies (HIAP) approach, supported by Health Impact Assessments (HIAs), seeks to assess the health implications of both health and nonhealth public- and private-sector poli-

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6 LIVING WELL WITH CHRONIC ILLNESS cies. HIAP is emerging as a credible public health policy approach toward health promotion and disease prevention to improve the lives and reduce the disability of people living with chronic illness. COMMUNITY-BASED INTERVENTIONS Evidence-based preventive interventions recommended for the general population are relevant to living well with chronic illnesses. Even when a particular health behavior is not directly related to a person’s chronic illness (e.g., smoking and arthritis), adoption of a healthy lifestyle by individuals with chronic illness can serve to improve their overall health and make them less vulnerable to further health threats and disability. Lifestyle be- haviors, such as physical activity, appropriate eating habits, smoking and tobacco use cessation, disease screening, vaccination, and chemoprevention (the use of chemical agents, drugs, or food supplements to prevent disease), are valuable health maintenance and promotion measures for individuals in the community. What is needed, however, is better evidence from exist- ing public health programs regarding their impact on the long-term health outcomes of those with overt chronic illness. Other potentially useful interventions with community dimensions include self-help management programs, disease management programs, complementary and alternative medicine, cognitive training programs, and access and mobility strategies for individuals with disabilities. These types of interventions are community-based and patient-driven and need further evaluation of their benefit to population health. There are rigorously evaluated interventions that have not been widely disseminated. More attention needs to be paid to the barriers to translating research into practice, including research design; resources; and sociocul- tural, physical, economic, and environmental barriers. Also, it is difficult to assess the long-term impact of community and public health interventions, including identifying any adverse effects of such interventions. Neverthe- less, the barriers to translating research into practice need to be addressed in order to provide more community-based intervention options for people living with chronic illness and disability. SURVEILLANCE AND ASSESSMENT Although the best way to meet the goal of living well is to effectively manage the illness, improve quality of life, and prevent the development of additional chronic illness, the difficulties of doing this persist. In order to determine if the program and community goals are being met, a comprehen- sive surveillance system is required that includes incentives for individuals and organizations to participate in surveillance activities. The characteris-

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7 SUMMARY tics of surveillance systems used to enhance living well with chronic illness are complex. They integrate a number of measures of the multiple deter- minants and dimensions of outcomes most relevant to patients, including measures of public health program structure and outcomes, the presence of policy initiatives, and the activities of the health care system. However, many barriers continue to prevent optimal integration and use of these data for program planning and evaluation. In addition to the need for funda- mental research on measurement reliability, validity, and responsiveness to change, many questions remain regarding which measurements are needed and how frequently data should be collected for surveillance to be effective. Although further research is needed, surveillance using a composite of relatively simple measures of life satisfaction and well-being and compre- hensively assessing health-related quality of life, combined with health care system (e.g., access) and population-level measures (e.g., clinical, access, and funding policies), will be necessary to monitor the effectiveness of relevant health care and public health interventions to promote living well among patients with chronic illness. Longitudinal approaches to popula- tion health surveillance will also be necessary for determining the impact of interventions aimed at living well with chronic disease. INTERFACE OF THE PUBLIC HEALTH SYSTEM, THE HEALTH CARE SYSTEM, AND THE NON–HEALTH CARE SECTOR Most of the literature related to population-based approaches to health improvement is not specifically focused on chronic illness. In addition, al- though models to align population-based public health interventions with health care have been widely proposed, they are largely untested. The type of payment system used in health care systems can have a sig- nificant effect on the effectiveness of chronic disease prevention and control services. Regardless of the type of payment system, however, few systems provide incentives for chronic disease prevention or improvements in the health outcomes of patients with chronic illness. Nevertheless, an aligned system with a strong interface among public health, health care, and the community and nonhealth care sectors could produce better prevention and treatment outcomes for populations living with chronic illness. In part, these systems are natural allies, as they often serve the same populations and see themselves as contributing to the public’s health, and they often share the burden of poor chronic disease outcomes. They could serve as powerful partners, because only together can they achieve living well across populations and across chronic illnesses.

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8 LIVING WELL WITH CHRONIC ILLNESS RECOMMENDATIONS AND RESPONSE TO THE CHARGE The committee makes 17 recommendations without priority order or measured ranking, as all of them are thought to be important strategies and steps to undergird public health action to help individuals living with chronic illnesses. The recommendations are presented under the seven ques- tions from the statement of task. The committee found that answering each question worked best with a different logical flow, so the recommendations are presented in order below, but the seven questions are not. Which chronic diseases should be the focus of public health ef- forts to reduce disability and improve functioning and quality of life? In view of the many chronic diseases and the great heterogeneity of their clinical manifestations and outcomes in different individuals, commu- nities, and populations, the committee does not recommend a specific set of diseases on which to focus for public health action. Instead, we chose nine exemplar diseases, health conditions, and impairments that have notable implications for the nation’s health and economy; impact function and dis- ability; often cut across chronic illnesses; complicate and/or increase risks for MCCs; and impact the community, families, and caregivers of those with chronic illness. Each represents an important challenge to public health. CDC’s announced theme of “winnable battles,” which generally leads to selection of diseases for which risk factor interventions lead to some level of primary prevention, is logical and valuable. However, to be more inclusive of the wide variety of chronic conditions and people who live with them, and to emphasize the need to optimize “living well” in these individu- als, the committee chose exemplars that reflect the tremendous variation in chronic diseases shown in the fourth framework (see Table 2-1). The exem- plar approach gives CDC the medical, social, and public health latitude to address many conditions, with varied anatomic, physiological, functional, and complex outcomes. Although each of the nine diseases is important for specific reasons, the committee wished to avoid comparing their importance relative to other, also important, chronic diseases, in the belief that competi- tion for the “worst diseases in society” is destructive and pointless. The committee’s multidimensional approach to selecting exemplars is intended to address these perceived limitations in the current approach to selecting diseases for public health attention: 1. Selecting diseases for control activity based on such criteria as prevalence, mortality, disability, and economic cost to the care sys-

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9 SUMMARY tem is useful, but these criteria are often orthogonal to each other, and thus the selection algorithm is in several ways arbitrary. 2. Selecting specific diseases inadequately addresses the great variation in clinical manifestations and trajectories that makes public health approaches complex and challenging. 3. A large number of people have less common illnesses that impact individuals and communities in important ways but are not in- cluded in disease-by-disease approaches. 4. The recognized problem of MCCs cannot be adequately addressed in current disease control activities. The nine exemplars did not come from a list but were chosen on the basis of the clinical and research experience of committee members to highlight some important features of chronic diseases that have received less emphasis in the past, including 1. Great diversity in clinical manifestations within and among chronic diseases, as well as the great variation in their manifestations as illnesses continue their natural histories. 2. The inclusion of illnesses that can be manifest across the life course, raising the possibility of public health interventions that may be effective at various life stages of disease. The life course approach also more effectively deals with the occurrence of recurrent or ad- ditional, different conditions (MCCs). 3. The highlighting of important psychological and social conse- quences that come with many chronic illnesses, including primary mental illnesses and those that are secondary to other conditions. 4. The highlighting of the chronic, multiple, degenerative age-related conditions, for which public health approaches are perhaps less well developed. The committee endorses CDC’s emphasis on “winnable battles” and thinks that the exemplar approach will help identify new types of battles and population-based interventions in the management and control of chronic diseases. The nine exemplar diseases are arthritis, cancer survivorship, chronic pain, dementia, depression, type 2 diabetes, posttraumatic disabling condi- tions, schizophrenia, and vision and hearing loss. Because different chronic illnesses affect social participation and health-related quality of life in varied ways, the committee uses examples of different chronic illnesses to illustrate key concepts. This should not, however, be viewed as an assertion that some illnesses are more burdensome or more important than others. In response to the question about which chronic diseases should be the

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10 LIVING WELL WITH CHRONIC ILLNESS focus of public health efforts to reduce disability and improve functioning and quality of life, and based on the discussion in Chapter 2, the committee makes two recommendations. Recommendation 1 The committee recommends that CDC select a variety of illnesses for special consideration based on a planning process that first and fore- most emphasizes the inclusion of chronic illnesses with cross-cutting clinical, functional, and social implications that impact the individuals who live with them. In addition, the committee suggests that other important criteria for illness selection include • nonduplication with major illnesses for which public health pro- grams have already been developed (e.g., cardiovascular disease, stroke); • those with important implications for various models of chronic illness care, such as public health, health system, and self-care programs, especially when effective health service interventions are possible; • variation in organ systems and long-term clinical manifestations and outcomes; and • those for which the effective public health preventive interven- tions are either most feasible or at least the subject of promising research. Also, there are many important intervention issues for living well with MCCs. Recommendation 2 Although research has attempted to characterize MCCs, the complexity of single chronic illnesses over time has not allowed for MCC taxono- mies that will be easily applicable to public health control of chronic diseases. Thus, the committee recommends that CDC: 1. Continue to review the scientific literature to monitor for poten- tial MCC taxonomies that are useful for planning, executing, and evaluating disease control programs of MCC occurrences. 2. Explore surveillance techniques that are more likely to capture MCCs effectively. This should include counting not merely the co-occurrence of diseases and conditions but also the order of oc- currence and the impact on quality of life and personal function.

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11 SUMMARY 3. Emphasize MCC prevention by selecting for execution and evalua- tion one or more exploratory public health interventions aimed at preventing or altering the course of new disease occurrences in pa- tients with MCCs or who are at risk for them. This might include established approaches, such as tobacco control, or experimental approaches, such as metabolic or genetic screening. 4. Increase demonstration programs for chronic disease control that cut across specific diseases or MCCs and emphasize mitigating the secondary consequences of a variety of chronic conditions, such as falls, immobility, sleep disorders, and depression. Which populations need to be the focus of interventions to reduce the consequences of chronic disease including the burden of dis- ability, loss of productivity and functioning, health care costs, and reduced quality of life? Numerous studies have documented differences in the prevalence of chronic diseases and outcomes among racial and ethnic groups across the life cycle in the United States. In general, African Americans have the high- est rates of chronic diseases and the worst outcomes. Hispanic Americans, Asian Americans, and American Indians have some higher and some lower risks for chronic health problems when compared with white Americans. The most extreme disparities in health are based on socioeconomic status. The implementation of evidence-based public health interventions is needed to help people with chronic illness in populations with the greatest disparities. However, there are considerable difficulties to assessing com- munity and public health interventions. Population-based interventions aimed at increasing health-promoting lifestyles that fail to give attention to differential response capabilities by race, ethnicity, socioeconomic position, and geographical location may inadvertently exacerbate health disparities, even as overall population health improves (IOM, 2010). Therefore, so that interventions designed to help individuals with chronic illness live well can be brought to the maximal number of people, more attention needs to be paid to the barriers to translating research into practice. Effective strategies to improve living well with chronic illness will con- sider the potential impact of health outcomes across population subgroups, as well as policies and social determinants that impact health and function. Recommendation 3 The committee recommends that the secretary of U.S. Department of Health and Human Services (HHS) support the states in devel- oping comprehensive population-based strategic plans with specific

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12 LIVING WELL WITH CHRONIC ILLNESS goals, objectives, actions, time frames, and resources that focus on the management of chronic illness among their residents, including community-based efforts to address the health and social needs of people living with chronic illness and experiencing disparities in health outcomes. Such strategic plans should also include steps to collaborate with community-based organizations, the health care delivery system, employers and businesses, the media, and the academic community to improve living well for all residents with chronic illness, including those experiencing disparities in health outcomes. All major chronic illnesses have the potential to impose an adverse impact on personal, family, and community economic status and the cost of medical care. At a time when the nation’s ability to address widespread economic hardship is challenged, it is extremely important for public health programs to reach out to all with such illnesses. In addition, research has shown that almost all chronic illnesses are associated with various dispari- ties, such as socioeconomic, race/ethnicity, and geographic status. For the sake of political enfranchisement and social justice, it is important to invoke feasible and appropriate surveillance and evidence-based control programs that touch the greatest number of persons living with chronic illnesses. Recommendation 4 The committee recommends that, in addition to addressing individ- ual illnesses in the community, all relevant federal and state agen- cies charged with public health and community approaches to control chronic illness, to the extent feasible, extend surveillance, evaluation, and mitigation programs to the widest possible range of chronic ill- nesses. This approach recognizes the commonality of important health, functional, and social outcomes for the population of individuals who live with different chronic illnesses. What is the role of primary prevention (for those at highest risk), secondary, and tertiary prevention of chronic disease in reducing or minimizing life impacts? Although there are authoritative sources of effective primary and sec- ondary preventive interventions for persons in clinical practice (e.g., the U.S. Preventive Services Task Force reports) and in the community (e.g., the Community Guide), neither of these resources systematically or com- prehensively addresses these important interventions for persons with overt chronic illnesses. The committee found major gaps in research-based rec-

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13 SUMMARY ommendations for routine preventive activities for those with common and important chronic illnesses. Recommendation 5 The committee recommends that the federal health and related agencies that create and promulgate guidelines for general and community and clinical preventive services evaluate the effectiveness of these services for persons with chronic illness and specifically catalog and disseminate these guidelines to the public health and health care organizations that implement them. What consequences of chronic diseases are most important to the nation’s health and economic well-being? The economic consequences of chronic illnesses for individuals, fami- lies, the health care system, and the nation are related to many factors, including the natural history and progression of the illness; secondary consequences of care; levels of treatment of adverse effects; the treatability of the primary illnesses; the economic, social, and medical care resources available to the patient; the chronic care models available; the direct cost of care; the presence of comorbidity; the impact on family function and economic productivity; and, to some extent, the impact of public health interventions on the illnesses. In Chapter 2, the committee describes a number of ways to improve the quality and utility of information on the economic burdens of chronic illness, and—importantly—on opportunities to prevent or reduce them. Recommendation 6 The committee recommends that CDC support the greater use of new and emerging economic methods, as well as those currently in use, in making policy decisions that will promote living well with chronic ill- nesses, including 1. those with greater use of cost-effectiveness techniques; 2. more exploitation of methods used in determining national health accounts, but for specific and important chronic illnesses with long- term outcomes; 3. enhanced consideration of opportunity costs for various program decisions; and 4. those with a greater focus on economic evaluation of interventions that involve MCCs and cut across a variety of community settings.

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14 LIVING WELL WITH CHRONIC ILLNESS What policy priorities could advance efforts to improve life impacts of chronic disease? As policy makers have focused on the implementation of various fea- tures of the ACA, the public health community may see this as an op- portunity to refocus efforts on those interventions at the population level essential to the prevention of chronic illness, thus reducing their role in interventions aimed at the management of chronic illness. As detailed in Chapters 3 and 6, the ACA provides a number of reforms and opportuni- ties that have the potential to improve the lives of individuals with chronic illness. The ACA has new care concepts to improve the coordination and delivery of care to persons living with chronic illness, insurance coverage options and subsidies to purchase insurance, as well as chronic disease prevention policies. Provisions in the ACA can be used to help align public health and clinical care services in order to promote living well for those with chronic illness. The ACA also contains important provisions for the development of programs related to healthier nutrition choices, reduction of risky behaviors, and increasing healthy behaviors. Therefore, the ACA can be leveraged as an existing law with important implications for living well with chronic illness at both the clinical and the community level. Recommendation 7 The committee recommends that CDC routinely examine and adjust relevant policies to ensure that its public health chronic disease man- agement and control programs reflect the concepts and priorities em- bodied in the current health and insurance reform legislation that are aimed at improving the lives of individuals living with chronic illness. There is a growing recognition that policies enacted by government agencies beyond the health sector have substantial effects on the health of the population (IOM, 2011). The concept of HIAP recognizes and under- scores the importance of considering the links between health and a wide set of government policies. This approach requires policy makers and other stakeholders to adopt collaborative and structured approaches to consider the health effects of major public policies in all government sectors. A HIAP approach has been successfully adopted in the European Union and in several Canadian providences. HIAs are a primary population health promotion tool for the achievement of a HIAP approach. HIAs require an assessment of the health impacts of policies, plans, and projects in di- verse economic sectors, using quantitative, qualitative, and participatory techniques (World Health Organization, [a]). To improve national health

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15 SUMMARY outcomes and reduce health risks, HHS recommends HIAs as an important planning resource for implementing Healthy People 2020. Recommendation 8 The committee recommends that the secretary of HHS and CDC ex- plore and test a HIAP approach with HIAs as a promising practice on a select set of major federal legislation, regulations, and policies and evaluate its impact on health-related quality of life, functional status, and relevant efficiencies over time. Which population-based interventions can help achieve outcomes that maintain or improve quality of life, functioning, and disability? • W hat is the evidence on effectiveness of interventions on these outcomes? • T o what extent do the interventions that address these out- comes also affect clinical outcomes? • T o what extent can policy, environmental, and systems change achieve these outcomes? Most of the literature related to population-based approaches to health improvement is not specifically focused on chronic disease. Although there is ample evidence of the effectiveness of widely disseminated wellness or lifestyle programs at community sites, there is inadequate evaluation of their impact on the health-related quality of life and health outcomes of individuals living with chronic illness. Although some interventions, such as physical activity, have been well studied and shown to improve the lives of persons living with many types of chronic illness, all interventions could benefit from further research on effectiveness, adaptation, and maintenance. Once interventions for both prevention of additional illness and control of existing illness are developed and shown to be effective, the public health community should join with health care systems and community organiza- tions in giving much more attention to disseminate and implement those interventions. Recommendation 9 The committee recommends that CDC conduct rigorous evaluations of its funded chronic disease prevention programs to include the effects of those programs on health-related quality of life and functional status.

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16 LIVING WELL WITH CHRONIC ILLNESS Recommendation 10 The committee recommends that all major CDC-funded research pro- grams aimed at primary community-based chronic disease prevention or interventions be evaluated for their effect on persons with existing chronic illness to assess health- and social-related quality of life, man- agement of existing illness, and efforts to prevent subsequent illnesses. Recommendation 11 The committee recommends that public and private research funders increase support for research on and evaluation of the adoption and long-term maintenance of healthy lifestyles and effective preventive services (e.g., promoting physical activity, healthy eating patterns, ap- propriate weight, effective health care) in persons with chronic illness. Support should be provided for implementation research on how to dis- seminate effective long-term lifestyle interventions in community-based settings that improve living well with chronic illness. The context for inequities and disparities in living well with chronic illness is described in Chapter 1 and highlighted again in Chapter 2. Ad- dressing these inequities will require that strategies to improve living well with chronic illness, as well as policies and social determinants that impact health and function, consider their potential impact on health outcomes across population subgroups. Recommendation 12 The committee recommends that federally supported efforts to improve living with chronic illness have as an explicit goal the reduction of health disparities across affected populations. • Barriers to obtaining complete assessments of community and pub- lic health interventions for populations experiencing health dispari- ties should be identified and addressed. • When interventions typically result in positive health outcomes for the general population of individuals living with chronic ill- ness, they should be assessed and modified for adaptation and implementation in communities experiencing disparities in health outcomes. The goal of health care is to improve the health outcome of individuals based on a medical regime and treatment. In contrast, the goal of public

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17 SUMMARY health is to improve the health status of the population through health pro- motion and disease prevention measures (Hardcastle et al., 2011). The ACA offers several opportunities to support improved coordination between public health and health care. Community-based non–health care sector organizations contribute significantly to the prevention and treatment of chronic disease. Serious efforts to reduce morbidity and to realize improved outcomes in chronic disease can benefit from cooperation among the public health, health care, and community non–health care sectors (Hardcastle et al., 2011). Such cooperation may also be a promising approach to cost effi- ciencies. There are also new and emerging models of care and public health initiatives, as described in Appendix B, designed to improve the functional status and quality of life for persons living with chronic illness that need to be tested, expanded, and evaluated. Recommendation 13 The committee recommends that HHS agencies and state and local government public health agencies (GPHAs) evaluate existing (e.g., chronic care model, expanded chronic care model), emerging, and/or new models of chronic disease care that promote cooperation among community-based organizations, the health care delivery system, em- ployers and businesses, the media, and the academic community to improve living well with chronic illness. • CDC and state and local GPHAs should serve convening and facilitating functions for developing and implementing emerging models. • HHS agencies (e.g., the Health Resources and Services Administra- tion, the Centers for Medicare and Medicaid Services, the Admin- istration on Aging, CDC) and GPHAs should fund demonstration projects and evaluate these emerging models. • Federal, private, and other payors should create new financing streams and incentives that support maintaining and disseminating emerging models that effectively address persons living well with chronic illness. Recommendation 14 The committee recommends that CDC develop and promote, in part- nership with organizations representing health care, public health, and patient advocacy, a set of evidenced-based policy goals and objectives specifically aimed at actions that decrease the burden of suffering and improve the quality of life of persons living with chronic illness.

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18 LIVING WELL WITH CHRONIC ILLNESS Worksite wellness programs have grown tremendously in the past decade, not only with government agencies but also with a diverse set of large self-insured employers and insurers. There are very limited data on such programs from small employers or businesses. The focus of worksite wellness programs is often improvement in lifestyle behaviors. Evaluation of the effectiveness of these programs in several systematic reviews and meta-analyses suggests a robust and significant effect on improvement of targeted lifestyle behaviors (e.g., diet, weight loss, physical activity). As discussed in Chapter 3, there is very scant evidence of worksite programs targeted at people living with chronic illness. Recommendation 15 The committee recommends that federal and state policy makers de- velop and implement pilot incentives programs for all employers, par- ticularly low-wage employers, small businesses, and community-based organizations, to provide health promotion programs with known effectiveness for those living with chronic illness. How can public health surveillance be used to inform public policy decisions to minimize adverse life impacts? In the change process driving interventions to help patients with chronic illness live well and to improve the nation’s health and economic well-being by reducing disability and improving quality of life and functioning, sur- veillance is the first step. This shift in focus from merely extending life to living well has the potential to facilitate decision making at the individual, health care system, and population levels, improving outcomes not only for patients and families but also for society. Integrating multiple measures of health status and detailed measures of determinants of health is required for an optimal surveillance system to assess how well individuals are living with chronic illness. Recommendation 16 The committee recommends that the secretary of HHS encourage and support pilot tests by health care systems to collect patient-level infor- mation, share deidentified data across systems, and make them avail- able at the local, state, and national levels in order to monitor and improve chronic illness outcomes. These data should include patient self-reported outcomes of health-related quality of life and functional status in persons with chronic illness.

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19 SUMMARY Recommendation 17 The committee recommends that the secretary of HHS establish and support a standing national work group to oversee and coordinate multidimensional chronic diseases surveillance activity, including ob- taining patient-level data on health-related quality of life and functional status from electronic medical records and data on the implementa- tion and dissemination of effective chronic disease interventions at the health care system and the community levels, including longitudinal health outcomes. CONCLUSION The burden of chronic disease in America today is indeed vast and con- tinues to grow. The sheer magnitude of this burden for society; the striking inequalities in living well among minorities, the elderly, and the disadvan- taged; and the simple fact that numerous chronic illnesses are leading causes of death and disability are all emblematic of the considerable limitations of existing policies, programs, and systems of care and support for people living with chronic illness today. Government public health agencies have the ability to take action to help people live better with chronic illness. They have the expertise to assess a public health problem, develop an appropriate program or policy, and en- sure that programs and policies are effectively delivered and implemented. The committee thinks that its recommendations are rooted in a population- based approach, underscore the importance of public health action in the management and control of chronic disease, and offer strategies to support public health efforts. As the nation strives to consider and implement new strategies for understanding and addressing the burden of chronic illness, it is imperative that those strategies give ample consideration to all chronic illnesses and all dimensions of suffering. Indeed, all chronic illnesses have the potential to reduce population health not only by causing premature death but also by limiting people’s capacity to live well during all the years of their lives. For society, living well is impacted both by the numbers of persons living with chronic illnesses and by the effects of those illnesses on the quality of life of patients, their peers, and their caregivers. In this context, the overall burden of chronic illness could be drastically reduced through coordinated efforts toward both primary prevention and other interventions and poli- cies designed to improve health for persons already living with chronic illness.

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20 LIVING WELL WITH CHRONIC ILLNESS REFERENCES Bloom, D.E., E.T. Cafiero, E. Jané-Llopis, S. Abrahams-Gessel, L.R. Bloom, S. Fathima, A.B. Feigl, T. Gaziano, M. Mowafi, A. Pandya, K. Prettner, L. Rosenberg, B. Seligman, A. Stein, and C. Weinstein. 2011. The Global Economic Burden of Non-Communicable Diseases. Geneva: World Economic Forum. CDC (Centers for Disease Control and Prevention). 2009. Prevalence and most common causes of disability among adults—United States, 2005. Morbidity and Mortality Weekly Report 58(16):421-426. http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5816a2.htm (accessed October 4, 2011). Hardcastle, L.E., K.L. Record, P.D. Jacobson, and L.O. Gostin. 2011. Improving the popula- tion’s health: The Affordable Care Act and the importance of integration. http://papers. ssrn.com/sol3/papers.cfm?abstract_id=1932724 (accessed October 4, 2011). IOM (Institute of Medicine). 2010. A Population-Based Policy and Systems Change Approach to Prevent and Control Hypertension. Washington, DC: The National Academies Press. IOM. 2011. For the Public’s Health: Revitalizing Law and Public Policy to Meet the New Challenge. Washington, DC: The National Academies Press. Kaiser Family Foundation. 2010. U.S. Health Care Costs. http://www.kaiseredu.org/Issue- Modules/US-Health-Care-Costs/Background-Brief.aspx (accessed October 12, 2011). Kung, H.C., D.L. Hoyert, J.Q. Xu, and S.L. Murphy. 2008. Deaths: Final data for 2005. National Vital Statistics Reports 56(10). http://www.cdc.gov/nchs/data/nvsr/nvsr56/ nvsr56_10.pdf (accessed October 4, 2011). Sainfort, F., and P.L. Remington. 1995. The Disease Impact Assessment System (DIAS). Public Health Reports 110(5):639–644. Vilnius, D., and S. Dandoy. 1990. A priority rating system for public health programs. Public Health Reports 105(5):463–470. World Health Organization (a). Health Impact Assessment (HIA). http://www.who.int/hia/en/. Wu, S.Y., and A. Green. 2000. Projection of Chronic Illness Prevalence and Cost Inflation. Santa Monica, CA: RAND Health.