This chapter provides an overview of community-based interventions aimed at helping people live well with chronic illness. It starts with a discussion of the effects of preventive interventions, including healthy lifestyles, screening, and vaccination of persons living with chronic illness. The chapter then discusses other interventions, including self-management, disease management, treatment adherence management, complementary and alternative medicine, cognitive training, and efforts to increase access for and mobility among those with chronic illness. Finally, it makes the case for monitoring and evaluating implementation of these interventions and their effects and commenting on the need for dissemination and dissemination research.
Evidence-based preventive interventions recommended for the general population are relevant to living well with chronic illness. In some cases, such interventions can affect the disease process, progression, or complications of chronic disease. For example, the Look AHEAD trial for people with diabetes has shown than an intensive 1-year intervention focusing on diet, exercise, and weight loss improved weight, diabetes control, and cardiovascular risk factors, with effects persisting 4 years after the intervention (Look AHEAD Research Group and Wing, 2010; Look AHEAD Research Group et al., 2007). Even when a particular health behavior is
not directly related to a person’s chronic illness (e.g., smoking and arthritis), adoption of healthy lifestyles by individuals with chronic illnesses can serve to “strengthen the host,” optimize overall health, and make them less vulnerable to further health threats and disability. Lifestyle behavior change cannot generally substitute for effective medical management of chronic illness, where it is available, but often supports “living well”—improving quality of life, ameliorating symptoms, and optimizing functional status. Below we summarize evidence related to benefits of preventive interventions for those with chronic illness as well as evidence-based strategies for optimizing adoption of the preventive intervention. For this overview we have relied primarily on systematic reviews and meta-analyses from such groups as the U.S. Preventive Services Task Force (USPSTF), Cochrane Database System Reviews, the Guide to Community Preventive Services of the Centers for Disease Control and Prevention (CDC), and the Advisory Committee on Immunization Practice (ACIP). In some cases, the research summarized in these reviews has emphasized the benefits of prevention for a particular chronic disease, but in general the body of research on living well with chronic disease is limited.
Increasing physical activity has a number of benefits for those with chronic illnesses, including decreasing the risk of cardiovascular disease, some cancers, and diabetes, as well as improving physical functioning (Physical Activity Guidelines Advisory Committee, 2008). Physical activity interventions have been shown to benefit those with chronic illnesses as well as the general population. Whereas exercise can be expected to improve fitness in most individuals, for people with chronic illnesses, what is critical is determining the effects on quality of life, function, and progression of their illness. For example, a systematic review of physical activity trials in cancer survivors reports improvements related to fatigue, functional aspects of quality of life, anxiety, and self-esteem involving exercise (Speck et al., 2010). For type 2 diabetes patients, structured exercise programs, physical activity, and dietary advice from a physician potentially affect the disease course, reducing HbA1c levels (Umpierre et al., 2011). The American College of Sports Medicine and the American Diabetes Association have issued a joint position statement supporting participation in regular physical activity for individuals with type 2 diabetes (Colberg et al., 2010). Increasing physical activity through exercise also helps those with depression. A Cochrane review of 23 randomized controlled trials (RCT) showed that participants in exercise interventions showed greater reductions in depression
both following treatment and at longer-term follow-up compared with a no-treatment control group (Mead et al., 2009), although, some methodological weaknesses were noted in the trials (e.g., inadequate blinding of outcome assessment). Evidence also exists that exercise may help relieve depressive symptoms of older adults who have osteoarthritis (OA) (Yohannes and Caton, 2010). The Arthritis Foundation and CDC, in their National Public Health Agenda for Osteoarthritis (2010), recommended promotion of low-impact aerobic and strength-building exercise for adults with OA in the hip and/or knee. OA research indicates that land-based exercise decreases pain, fatigue, and stiffness and improves performance on functional assessments (Callahan et al., 2008; Hughes et al., 2006). A Cochrane review of exercise for knee OA concluded that both land-based and aquatic exercise has short-term benefit in terms of reduced pain and improved physical functioning (Bartels et al., 2007; Fransen and McConnell, 2008).
Physical activity appears to be helpful to people with other chronic illnesses as well. For example, aerobic physical activity, alone or when included in multicomponent interventions, has also been shown to be beneficial to patients with fibromyalgia syndrome, having moderate-sized effects on pain, fatigue, depressed mood, and quality of life (Häuser et al., 2009, 2010). A Cochrane review on exercise for fibromyalgia indicated that moderate aerobic exercise may benefit overall well-being and physical function, whereas strength training appears more beneficial in terms of reducing pain, tender points, and depression (Busch et al., 2007). A limited number of studies have been conducted to test the effects of exercise on dementia. Results of the studies have been mixed, and the methodology has been of low to moderate quality, but some studies have indicated that participation in exercise is associated with such outcomes as better mobility and physical performance and improvement in activities of daily living (ADLs) (Blankevoort et al., 2010; Littbrand et al., 2011; Potter et al., 2011; Vreugdenhil et al., 2011); however, it is unclear whether exercise has an effect on cognitive functioning in this population (Littbrand et al., 2011).
Although substantial evidence has accrued for the benefits of physical activity for people with a range of chronic illnesses, there is limited evidence to indicate what type, duration, and intensity of exercise is most helpful for improving function, quality of life, and disease progression for most chronic illnesses, nor are there sufficient evidence-based programs to help individuals with chronic illnesses to successfully adopt and maintain exercise. A survey conducted of physical activity programs for the elderly in seven U.S. communities highlights the problems of both insufficient demands from this population as well as insufficient program capacity. The survey showed that the programs were serving only approximately 6 percent of the elderly population; however, less than 4 percent of the programs had waiting lists for their services (Hughes et al., 2005).
There are few evidence-based community programs specifically for individuals with chronic illnesses that have been shown to increase physical activity and improve outcomes, although programs developed for individuals with OA have been shown to be effective and successfully implemented. For example, a randomized trial of the 8-week Arthritis Foundation’s Exercise Program intervention showed effects on pain, fatigue, and self-efficacy, with symptom improvements maintained at follow-up 6 months later. The prevalence of a particular chronic disease may limit the usefulness of having disease-specific physical activity programs for many chronic diseases. However, physical activity programs that are adaptable to individual needs may be appropriate for people with a range of chronic illnesses. An example is EnhanceFitness, an evidence-based physical activity program developed for older adults. EnhanceFitness is a 1-hour class that meets 3 times per week and includes moderate intensity aerobic exercise, strength training, flexibility, and balance-enhancing exercises. Benefits of the program include prevention of age-related decline in health status as measured via the SF-36 health survey (Wallace et al., 1998) and improved physical performance (Belza et al., 2006); participation in the program is also associated with reduced health care costs for individuals making heavy use of the program (Ackermann et al., 2008).
Several interventions are recommended by the CDC’s Guide for Community Preventive Services to increase physical activity (Community Preventive Services Task Force, 2005a). Although these evidence-based interventions have not necessarily been tested in populations with chronic illnesses, several have been tested in older adults, who are more likely to suffer from chronic illnesses. Individually tailored health behavior programs also have sufficient evidence to be recommended by the task force. Such programs include evidence- and theory-based behavioral strategies to modify behavior, including goal setting and self-monitoring, rewarding positive changes in behavior, structured problem-solving skills, soliciting social support for the behavior changes, and preventing relapse. Interventions to increase social support for physical activity in community settings, such as exercise buddy systems or walking groups, are also recommended. Community-wide campaigns that involve sustained effort to promote high-visibility messages about increasing physical activity have been shown to be effective and may be combined with individual-level education/counseling efforts. Finally, recommended policy changes and environmental interventions include community-scale and street-scale urban design and land use policies, increased access to places for physical activity combined with informational outreach, and point of decision prompts to use stairs (Community Preventive Services Task Force, [d]). Urban design features that enhance activity include land use policies that influence the proximity of stores and other destinations to residential areas, aesthetics and safety, and
connectivity/continuity of sidewalks and streets (Community Preventive Services Task Force, [b]).
Diet and physical activity are often linked when offering interventions for the prevention of chronic dieases. Although recommendations for healthy diets come from a variety of sources, they offer similar patterns of intake. Recommended Dietary Allowances (RDAs), Dietary Reference Intakes (DRIs), and the Dietary Guidelines for Americans are fairly consistent in recommending a diet that maintains a healthy weight, encouraging a rich intake of fresh fruits and vegetables (preferably those that are dark green, red, or orange), complex carbohydrates (whole grains), and low-fat dairy products and minimizing saturated fats (except for mono- or polyunsaturated fatty acids), lowering the consumption of salt, and taking in adequate fluids. These recommendations are also consistent with the Healthy People 2010 and Healthy People 2020 targets.
Individuals with chronic illnesses may encounter socioeconomic issues that contribute to food insecurity, a situation in which individuals have to make choices about how to spend limited income. Fresh fruits and vegetables may be expensive, whereas rice and potatoes are not. Food insecurity may also encompass challenges in procuring or preparing adequate food. Those with disabilities may have more problems with being able to independently shop or cook food and may rely on prepared or processed products, which are often high in salt and fat.
It is difficult for some older people to make healthy choices if they have not been educated in the basics of nutrition. Identifying nutritional deficiencies is often difficult, and both poor nutrition and obesity may have underlying etiologies that are not directly caused by poor choices about foods consumed. Eating can become a challenge for those who have to navigate making healthy food choices adhering to the multiple public health messages to consume less sodium, less fat, more unsaturated fats, less trans-fat, fewer triglycerides, more fruits and vegetables, as well as other dietary modifications associated with managing their chronic illness.
Smoking cessation is an important behavior-change target for people with chronic illnesses, particularly those whose illness is related to their tobacco use (HHS, 1990). Data from the National Health Interview Survey indicate that many individuals with smoking-related chronic illnesses continue to smoke; the prevalence of smoking among individuals with a smoking-related chronic illness is 36.9 percent, 23 percent among individuals
with chronic illnesses that are not smoking related, and 19.3 percent in people with no chronic illness (Rock et al., 2007). Gritz et al. (2007) reviewed the literature with regard to benefits of smoking cessation and effectiveness of interventions for individuals with cardiovascular disease, chronic obstructive pulmonary disease, diabetes, asthma, cancer, and AIDS. For these diseases, continued smoking has been shown to increase the risk of disease exacerbation or complications. Smoking cessation interventions, delivered primarily in health care settings or in the context of self-management programs, have shown mixed results with regard to efficacy. More research is needed to determine optimal smoking cessation intervention approaches for individuals with chronic illnesses, as well as whether existing smoking cessation services are effective and accessible to individuals with chronic illness. A state of the science conference held by the National Institutes of Health (NIH) on smoking cessation in adults (including special populations) concluded that self-help strategies alone were not effective at increasing cessation rates, but combined counseling and pharmacotherapy were largely effective (Ranney et al., 2006). However, few studies focused on ways to reach special populations, such as those with chronic illness. One approach, intensive smoking cessation counseling delivered to hospitalized patients, has not been shown to be effective.
The 2008 nicotine dependence treatment guidelines (HHS and Public Health Service, 2008) conclude that cessation treatment, including both counseling and pharmacological treatment, is effective for smoking cessation in patients with cardiovascular disease, lung disease, and cancer, but that there were insufficient trials in HIV/AIDS populations. For individuals with psychiatric illnesses, who have high smoking rates compared with the general population, smoking cessation pharmacological (buproprion SR and nortriptyline for depressed individuals and nicotine replacement and buproprion SR for individuals with schizophrenia) and counseling interventions have also shown effectiveness. The guidelines concluded that there is insufficient evidence to indicate that individuals with psychiatric disorders benefit more from interventions tailored to the psychiatric disorder or symptoms than standard treatments. A more recent systematic review of smoking cessation interventions for individuals with severe mental illness confirmed that such individuals are able to quit smoking with pharmacological (buproprion and nicotine replacement therapy) and behavioral interventions (individual and group therapy) that are effective in the general population. Furthermore, those who are stable at the initiation of treatment do not suffer increases in psychiatric symptoms (Banham and Gilbody, 2010).
Individuals with chronic illnesses can also benefit from community efforts to encourage tobacco use cessation and reduce exposure to
secondhand smoke. Tobacco policies in the community decrease exposure to secondhand smoke, and those in the workplace increase smoking cessation and decrease secondhand smoke exposure. In the workplace, incentives and competitions can be effective in increasing tobacco cessation when combined with other efforts. Recommended interventions for smoking cessation include mass media campaigns when combined with other interventions, an increase in the unit price of tobacco products, provider reminders with and without provider education, reduced out-of-pocket costs for tobacco cessation, and multicomponent interventions that include telephone counseling (Community Preventive Services Task Force, [a]).
Screening and Vaccination
USPSTF has developed recommendations for clinical preventive services based on systematic reviews of the literature. With few exceptions, recommendations of USPSTF apply as well to people with chronic illnesses as they do to people without chronic illness. The only exceptions to general prevention recommendations for people with chronic illnesses involve situations where the presence of the chronic illness changes the magnitude of benefit or harm from the specific preventive service. For example, if the chronic illness reduces life expectancy to a substantial degree, the potential benefit from the preventive service (e.g., screening mammography in women with metastatic lung cancer) may be reduced and the preventive service becomes inappropriate. Likewise, if the chronic illness increases the testing burden or the potential psychological or physical harm of the preventive service (e.g., colorectal cancer screening in people with advanced dementia), again the preventive service is inappropriate. As with individual preventive services for anyone, it is important for the health care system to assist people with chronic illnesses to consider the potential benefits and harms to make an informed decision about preventive services. Sometimes, people with chronic illnesses may decide that the burden of testing and possible work-up and treatment is not worth the potential benefit, or that the added burden of yet another medication (even if prophylactic) is more than they are willing to bear. Some people with chronic illnesses may decide that, given their situation, some preventive services are just not a high enough priority for them to spend the time and energy (both physical and emotional) to engage in them. In these situations, the health care systems should respect and support the person’s decision (Sawaya et al., 2007).
Chronically ill individuals often suffer from multiple chronic conditions (MCCs) (HHS, 2010), and thus relevant outcomes for preventive interventions may be broader than those traditionally used to assess effectiveness of preventive services and include multiple domains. Some of these domains may be represented by a multiplicity of measures that create difficulties for clear, straightforward interpretation. The strategic framework on MCCs of
the U.S. Department of Health and Human Services (HHS) identifies the definition of relevant health outcomes for individuals with MCCs as one of its priority objectives (HHS, 2010). Furthermore, the specific benefit of a preventive intervention for individuals with chronic illnesses may not be known. Randomized clinical trials of preventive services often exclude individuals with chronic illnesses or recruit them in insufficient numbers to allow subgroup analyses that could identify benefits and risks of the intervention. The risk of harm from the intervention might be higher for individuals with chronic illnesses. For example, in screening for cancer in those with heart failure or chronic obstructive pulmonary disease (COPD), consideration should be made of the risk of overtreatment and the individual’s ability to tolerate treatment if a cancer is identified. As another example, people who are older and with chronic illnesses suffer more complications from screening colonoscopy than do younger people without chronic illnesses (Warren et al., 2009).
Influenza vaccines are one clinical preventive intervention for which there is evidence of benefit for individuals with chronic illness. The PRISMA study was a nested case-control study that evaluated the risk reduction of influenza vaccine among adults between the ages of 18 and 64 with chronic illness (Hak et al., 2005). In this age group, influenza vaccination prevented 78 percent of deaths, 87 percent of hospitalizations, and 26 percent of visits to a general practitioner. Influenza vaccine is recommended for all individuals age 6 months and older, but special emphasis is placed on immunizing individuals at higher risk of complications, including those with chronic illnesses, such as pulmonary and cardiovascular disease (except hypertension); renal, hepatic, and hematological diseases; neurological disorders; and metabolic disorders, such as diabetes. Individuals who are immunocompromised, because of either an illness or a treatment, are also a high priority for influenza vaccine outreach (CDC, 2011).
Because these clinical preventive services are for the most part delivered through health care settings, and individuals with chronic illnesses may have more contact with the health care system, they may have increased opportunities to receive preventive care. A study of preventive health care in individuals with lupus found that they had comparable levels of cancer screening to a general population sample and a sample of patients with other chronic illnesses (diabetes, asthma, and heart disease). The sample with lupus had higher rates of influenza vaccination and lower rates of pneumococcal vaccination than the general population had, and the patients with other chronic illnesses had lower rates of both types of vaccination (Yazdany et al., 2010). Having a primary care provider and a rheumatologist involved in care increased the likelihood that individuals with lupus received the influenza vaccine. Baldwin and colleagues (2011) studied preventive care in colorectal cancer survivors from the year prior
to diagnosis to up to 8 years postdiagnosis using SEER (Surveillance, Epidemiology, and End Results)–Medicare data. Patients with stage 0 or 1 colorectal cancer had higher rates of mammography screening and having the influenza vaccine than did those with stage 2 or 3 cancer and controls. For individuals with stage 2 or 3 cancer, their use of mammography and influenza vaccine increased from prediagnosis through posttreatment and survivorship phases, indicating that perhaps either the “teachable moment” of the cancer diagnosis or their increased contact with the health care system facilitated their receipt of preventive services (Baldwin et al., 2011).
The Guide to Community Preventive Services recommends a number of measures to increase uptake of screening in the general population, which would be likely to impact those with chronic illnesses as well. Education efforts using one-to-one methods (breast and cervical cancer screening) or small-group education (breast cancer screening only) as well as small media (videos and print material to encourage people to obtain screening) have shown to increase screening uptake. Client reminder systems (breast and cervical cancer screening), a reduction in structural barriers (breast cancer screening only), and a reduction in out-of-pocket costs (breast cancer screening only) also increase screening rates (Community Preventive Services Task Force, [a]). Offering the influenza vaccination in the workplace to both health care and non–health care workers is recommended for increasing influenza vaccination rates and would be a useful adjunct to offering vaccinations in health care settings (Community Preventive Services Task Force, [c]).
Barriers to Lifestyle Behavior Change for Individuals with Chronic Illness
Efforts to increase adoption of healthy lifestyle behaviors among individuals affected by chronic illness should be undertaken with sensitivity to the additional barriers often faced by these populations. Individuals with low socioeconomic status, and African Americans and Hispanics, are more likely to experience chronic illnesses and impaired functional status (Kington and Smith, 1997), and therefore they may live in neighborhoods that have a high density of advertising of tobacco and alcohol products and outlets where such products may be purchased (Barbeau et al., 2005; Gentry et al., 2011), as well as poor access to fitness and recreation facilities, or supermarkets that sell fresh fruits and vegetables (Estabrooks et al., 2003; Larson et al., 2009). Furthermore, fitness and recreation facilities, as well as outdoor areas supporting physical activity, may not be accessible or welcoming to individuals with disabilities (Rimmer et al., 2004, 2005). Additionally, neighborhood safety is generally poorer in low socioeconomic status (SES) neighborhoods (Wilson et al., 2004) and may disproportionately affect people with chronic illnesses, particularly those with functional limitations who are more vulnerable to violence (Levin, 2011), falls, and
physical barriers. Fear of violence in the community may suppress physical activity and also affects healthy eating patterns. Disparities such as these point to the need for environmental and policy approaches to supporting healthy lifestyle behavior among individuals with chronic illnesses (Brownson et al., 2006), including availability and accessibility of outlets for physical activity and healthy eating, and addressing violence in the community (Cohen et al., 2010); such approaches may be even more important for these populations than the general population.
Other Living Well Interventions
In 2005, 133 million people in America had at least one chronic illness (Partnership for Solutions National Program Office, 2004). About 25 percent of individuals with chronic illnesses have activity impairments (Partnership for Solutions National Program Office, 2004). The management of chronic illness often requires a multifactored approach among health care team members, informal caregivers, and the patient. One approach to minimizing the costs and instilling individual responsibility and confidence is the development of self-management programs. These programs offer information and behavioral strategies that provide tools for individuals to use in caring for their chronic illness. These programs need to be based on what the patients perceive as problematic, not on what health care providers think the focus of education should be (Lorig and Holman, 2003).
Self-management requires a set of skills that can be taught to individuals with chronic illness. These include problem solving, decision making, resource utilization, developing a patient-provider partnership, and taking action (Lorig and Holman, 2003). The development of self-management strategies is often done on an individual case basis. The dissemination of an evidence-based program for the self-management of chronic disease in the community is a recent phenomenon (Lorig et al., 2005). A 6-week program called the Chronic Disease Self-Management Program (CDSMP) was developed by a group of investigators at Stanford University in the 1990s. The program dissemination was implemented and evaluated at Kaiser Permanente, an integrated health care system that serves well over 8 million people (Lorig et al., 2005). In a 2-year follow-up, the investigators examined health status and health resource utilization (Lorig et al., 2001a). Health resource utilization, measured as the number of emergency room and outpatient visits, was reduced, and there was an improvement in self-efficacy or the confidence in one’s ability to deal with health problems. In a smaller study that measured outcomes after one year, there were similar
results: fewer emergency room and outpatient visits, although the results were not statistically significant (Lorig et al., 2001b).
Self-management of chronic diesases has since been evaluated in a variety of clinical trials. There are conflicting reports of their effectiveness and essential components (Chodosh et al., 2005). In a meta-analysis of the literature, 780 studies were reviewed and 53 were selected for analysis, including 26 diabetes programs, 14 osteoporosis studies, and 13 hypertension studies (Chodosh et al., 2005). The diabetes and hypertension studies reviewed showed clinical improvements in the participants’ outcome measures (HbA1c and both systolic and diastolic blood pressure), but the osteoarthritis participants had only minimal impact on the outcome measures for pain and function. However, the investigators reported that the meta-analysis had limitations, in that the studies included were of variable quality. Self-management programs have been applied to different chronic disease interventions for osteoarthritis (Wu et al., 2011), depression (Zafar and Mojitabai, 2011), diabetes (Ismail et al., 2004; Moore et al., 2004), hypertension (Schroeder et al., 2004a, 2004b), and others (Chodosh et al., 2005; Gardetto, 2011).
There are other self-management programs, most notably Matter of Balance, a self-management program designed to decrease the risk of falls. The efficacy of a fall prevention program seems to be linked to a perception of need on the part of the individual (Calhoun et al., 2011). A recent meta-analysis concluded that fall prevention programs do reduce falls by 9–12 percent as reported in the literature (Choi and Hector, 2011).
Participation rates in patient self-management programs seem variable, depending on the program, the population, and the locale (Bruce et al., 2007). A recent study conducted in Canada that reviewed the implementation and success of a self-management program for individuals with chronic illnesses found a general lack of understanding about self-management, a minimum of evidence-based practices, and a tendency to focus on a single illness entity. The challenge was that most of the patients had multiple comorbidities and self-management programs did not account for this and proved to be a burden for patients and providers alike (Johnston et al., 2011).
Disease management programs are widely used by health plans and overlap with self-management programs. Disease management programs seek to detect patients with chronic illnesses and to increase their use of self-management and coordinated care with an eye toward improving outcomes and controlling costs (Bernstein et al., 2010). In 2010, 67 percent of large employers consisting of 200 or more workers included disease
management in their most popular health plan (Kaiser Family Foundation and Health Research and Educational Trust, 2010). The effects of disease management programs have been well studied for a number of chronic diseases, including asthma, chronic obstructive pulmonary disease, congestive heart failure, coronary artery disease, depression, and diabetes but not for others, including Alzheimer’s disease, cancer, dementia, and musculoskeletal disorders (Mattke et al., 2007).
Results are mixed for disease outcomes and costs. For fee-for-service Medicare beneficiaries, a recent analysis of 15 demonstration programs found little evidence of improved functioning or decreases in hospitalizations, and none of the programs produced net cost savings (Peikes et al., 2009). An earlier review of three large population-based programs and meta-analyses covering 317 studies concluded that disease management can improve quality of care and outcomes for congestive heart failure, coronary artery disease, diabetes, and depression, but effects on cost are inconclusive (Mattke et al., 2007). Characteristics of relatively effective programs include the use of individualized case management, personal contact (as opposed to phone-only contact), hospital discharge as a key disease management opportunity, and reduced or no cost sharing for effective medications and other treatments (Bernstein, 2011).
Management of Treatment Adherence
Individuals who live with chronic illness have interventions prescribed by their primary care providers in the form of medication regimens, dietary modification, or physical therapy and exercise. Success of any intervention requires that the patient comply with prescribed therapies to experience relief of symptoms associated with their chronic illness, but to also slow or stop progression of their illness. It has been reported, however, that only one-third of patients accurately follow their physicians’ recommendations (Becker, 1985). In a review by Sackett (1976), it was reported that follow-up appointments were missed 20 to 50 percent of the time and 50 percent of patients did not take medications as prescribed. Behavior changes are even less successful, particularly when the outcome is smoking cessation, changes made in dietary habits, and self-management of physical therapy and exercise regimens (DiMatteo, 2004; Medina-Mirapeix et al., 2009; Rhodes and Fiala, 2009; Sackett, 1976). Noncompliance with health interventions is difficult to quantify and makes evaluation of the intervention’s success invalid and unreliable (Becker, 1985). In a series of meta-analyses, patient adherence to prescribed therapies ranged from 4.6 to 100 percent, with a median of 76 percent and an overall average of 75.2 percent (DiMatteo, 2004).
Efforts by researchers to identify determinants of patient noncompliance
have defined several categories of potential causes. One area explored is that of increasing patient knowledge, assuming that information about one’s illness and its treatments will lead to greater compliance. Results of the studies revealed that individuals who were recently diagnosed (within 5 years) were more compliant with their medication regimen than were those who had lived with the illness for more than 20 years (Becker, 1985).
A second area of exploration is health-related decision making. The theory is that individuals are guided in their decision making by their attitudes and beliefs, which may be disconnected from the information provided by their care providers. The Health Belief Model (HBM), developed by compiling considerable empirical evidence, includes four factors: health motivation, susceptibility or sense of vulnerability, severity of their condition or perception of the seriousness of consequences of noncompliance, and the benefits and costs of the intervention (Becker, 1985). It has been pointed out that this is a psychosocial model that may not account for a lot of variability among patients.
Patients may find medical recommendations complicated, expensive, or inconvenient, particularly for chronic illnesses (Stephenson et al., 1993). Non-adherence is widespread and can occur for many reasons, including patients’ misunderstanding physician recommendations, lack of social support, socioeconomic conditions, depression, and inadequate patient education, among others (Briesacher et al., 2007; DiMatteo, 2004). A significant factor that contributes to non-adherence is that medications for chronic illness management are often associated with unpleasant side effects (Barton, 2011). A consensus of many studies is that factors that are not subject to modification (i.e., age, gender, race, intelligence, and education) are not associated with level of compliance (Stephenson et al., 1993).
There is evidence that noncompliance with prescribed medication regimens among patients with chronic illness leads to potentially negative consequences, including hospital admissions (Bell et al., 2011). The more complex the drug therapy is, especially among older patients with MCCs, the more challenging the management. To best manage complex regimens, a multidisciplinary team is needed to address individual needs (Stegemann et al., 2010). Other approaches are being investigated to improve adherence to therapeutic regimens, including technology (Bosworth et al., 2011; Donkin et al., 2011; Reach, 2009) and other innovative approaches such as new packaging strategies (Mahtani et al., 2011) and behavioral motivations (Russell et al., 2011).
Complementary and Alternative Medicine
The National Institutes of Health has defined complementary and alternative medicine (CAM) as “a group of diverse medical and health care
systems, practices, and products that are not generally considered part of conventional medicine” (NCCAM, [a]). It has been reported that nearly 40 percent of American adults and about 12 percent of children use some type of complementary and alternative medicine, including dietary supplements (Barnes et al., 2008). Data from the National Health Interview Study conducted in 1999 indicate that, of those who use complementary and alternative medicine, almost 31 percent were non-Hispanic whites, 20 percent were Hispanics, and 24 percent were non-Hispanic blacks (Ni et al., 2002).
The distinction between complementary medicine and alternative medicine is that complementary products are used in conjunction with conventional therapies, whereas alternative medicine practices are used in place of conventional medicine (Ventola, 2010a). In effect, the use of these interventions is a version of self-management in the prevention or treatment of chronic illness. The most commonly used complementary medicine products include herbal remedies, massage, megavitamins, self-help support groups, folk medicine, energy healing, and homeopathy (Ness et al., 1999). The most common ailments cited for selecting CAM therapies are back and neck pain, joint pain, and arthritis (Barnes et al., 2008; Ventola, 2010a). In a study conducted in the state of Washington, investigators found that participants who used CAM therapies exclusively were less likely to engage in preventive health behaviors than those who used conventional medicine or those who used conventional medicine in combination with CAM approaches (Downey et al., 2009). Physicians and pharmacists are often poorly informed about many CAM products, do not ask patients about their use, and are uncomfortable answering questions about the efficacy of these therapies due to the lack of evidence-based information in the literature (Ventola, 2010a).
The use of CAM approaches in the management of chronic illness raises some concerns among health care providers because of the lack of scientific evidence supporting the use of these products and the potential for ignoring traditional and effective therapies (but also in terms of safety and efficacy) (Ventola, 2010b). The Dietary Supplement Health and Education Act of 1994 did not mandate that manufacturers prove that their products are safe; rather, it put the burden on the U.S. Food and Drug Administration (FDA) to prove them unsafe (Ventola, 2010b).
The maintenance of cognitive abilities is a serious, chronic, and common issue for many older adults. Attempts to retain cognitive function are becoming an area of clinical research for geriatricians, psychologists, and others who work with older and disabled adults. Research has shown that declining cognitive ability is associated with increasing dependence and the
potential for nursing home placement (Wolinsky et al., 2006a). A randomized control trial to evaluate cognitive training interventions (i.e., memory, reasoning, and speed of information processing) previously tried in laboratory settings or in small-scale groups under controlled conditions was conducted in a multisite RCT. The project, Advanced Cognitive Training for Independent and Vital Elderly (ACTIVE), began in 1998 and continued follow-up evaluations through early 2002 (Jobe et al., 2001). This study focused on primary outcomes that address the cognitive function skills needed to manage everyday functions, such as managing finances, food preparation, driving, and medication use. Secondary outcomes that were a part of this project included health service utilization and quality of life measures. These outcome measures should provide insight into the ability to maintain living independence and health care resource utilization. There were four groups in this study (memory training, reasoning, speed of processing, and a control); 25 percent of the study participants had an extensive health-related quality of life (HRQoL) decline. The speed-of-processing arm of the study showed the most promise with the least HRQoL decline, although the other arms of the study seemed to have equivalent outcomes (Wolinsky et al., 2006a). The same cohort was reevaluated at 2 and 5 years postintervention (Wolinsky et al., 2006b). Although the speed-of-processing intervention had stronger and longer effects on the retention of cognition, the two arms memory training and reasoning also had positive effects in decreasing age-related cognitive declines compared with a control group.
The ACTIVE study was a large RCT involving six research sites and potentially 4,970 participants. After initial screening, 2,802 subjects were randomly placed into one of the four arms of this study. Subsequent studies used different randomization groups to examine within-group variability of response to training. There were 703 subjects examined in the memory training arm. Results of data analysis demonstrated three distinct response patterns. Subjects tended to benefit most from learning specific mnemonic techniques (Langbaum et al., 2009). Despite the variability, the study results demonstrate that older adults do respond to memory training. Other investigators have confirmed that screening and cognitive training do have a positive impact on the retention of skills needed to maintain the ability to remain independent (Gross et al., 2011a, 2011b).
Another approach to improving cognitive function in older adults involves exercise. Physical training appears to be associated with a lower risk of cognitive impairment and dementia (Etgen et al., 2010; Geda et al., 2010; Laurin et al., 2001). A study conducted in Hong Kong compared two interventions for improving cognitive function in older adults. The methods compared were coordination exercises, including a set of simplified Tai Chi movements and exercises focused on upper body strength using a towel as a tool. Of the two, towel exercise is promoted as the more effective strength
training method for persons with impaired locomotive abilities (Kwok et al., 2011); however, 40 individuals were recruited for this study, and after 8 weeks of intensive therapy, the coordination exercise groups both showed a significant improvement in the cognitive function scale used (Dementia Rating Scale).
Behavior, diet, and exercise programs have also been shown to improve both behavioral and cognitive symptoms in mild cognitive impairment (Hahn and Andel, 2011). Non-pharmacologic treatments are more cost-effective in a long-term intervention than are drugs to which there may be less adherence over time due to a variety of potential side effects.
Access and Mobility
Providing access opportunities for individuals with disabilities is a concept that has been important since the early 1960s, when disabled veterans of World War II and polio victims were excluded from social interactions, workplaces, and other communal spaces due to lack of access (Gossett et al., 2009). Spurring the development of an accessible built environment was the passage of the Americans with Disabilities Act of 1990.
The city of Chicago was among the first to institutionalize the concept of universal accessibility and conducted a citywide assessment of buildings; shared spaces, such as public bathrooms; and common areas, such as parks and playgrounds (Hanson, 2008). Chicago achieved the goal of accessibility by revising the building codes for new and renovated homes, office buildings, hospitals, clinics, and other built environments.
Although the original intent was to allow greater access for individuals with disabilities, the concept, also referred to as universal design, has broadened to other populations that might benefit from accessible environments (Canadian Human Rights Commission, 2006; Gossett et al., 2009). The concept of universal design is broader than access to physical structures, involving building ramps, automatic doors, and elevators. It includes the design of shampoo bottles, showers and baths, playgrounds and other communal areas, and devices for grooming, cooking, and other activities of daily living. In developing universal design facilities and products, investigators have found that the key themes include involving the stakeholders, considering aspects of “green” design, and addressing issues of diversity (Gossett et al., 2009).
Among the key concepts emerging from the development of universal design is that of Leadership in Energy and Environmental Design (LEED) certification. LEED is an internationally recognized green building certification system developed in March 2000 by the U.S. Green Building Council. Many of the aspects of LEED certification contribute to addressing the needs of individuals with pulmonary problems, disabilities that require flexibility
in armrests or seat heights and require low physical effort to make adjustments, and lighting strategies that meet the needs of individuals with vision impairments, among others (Gossett et al., 2009).
A relatively recent trend in rehabilitation is the adoption of evidence-based guidelines. One approach is to use a “human factors perspective” (Fain, 2006). Accessibility evaluation can be performed using a direct measurement or a derived measurement. Direct measurement is accomplished by putting the patient or client in contact with the device or product and observing his or her ability to interact with the device (i.e., an assistive device, such as a walker or electric wheelchair or a computer, that can be used with nontraditional access), perform appropriate tasks, maintain safety, and achieve functionality. Derived measurement does not include a surrogate or patient but can be accomplished by a skilled evaluator who understands human performance as well as technical knowledge about how the product or device needs to perform (Fain, 2006).
Among the new approaches to enable disabled individuals to interact successfully with their environment is the use of assistive technology devices (Muncert et al., 2011; Zwijsen et al., 2011). An assistive technology device, as defined by the Assistive Technology Act of 1998 (Institute on Disabilities, Temple University, [a]), is “any item, piece of equipment, or product system, whether acquired commercially, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities.” Disabled individuals may have a decreased quality of life due to social isolation, increased dependence, or reduced social interaction. Assistive technology, such as telehealth, may help to maintain a better quality of life and independent function. Individuals may be monitored or receive health care through technologies that allow telemedicine or telehealth assistance with sensory, cognitive, or physical disabilities. In one study, the devices that were valued highest were those that provided the most help to the individual user, saved time, were cost-effective, and were technologically advanced (Muncert et al., 2011).
Weight Control Programs
Being overweight or obese increases the risk of chronic illness, including heart disease, type 2 diabetes, stroke, and certain types of cancer (Kahn et al., 2009); therefore it is important to make weight control programs available to the public for health promotion. Participants in community-based weight management programs that implement national treatment guidelines can achieve significant weight loss, regardless of age or gender, which improves cardiovascular and other chronic illness risk factors (Graffagnino et al., 2006).
Lifestyle modification interventions are effective in reducing chronic
illness (Thorpe and Yang, 2011). The YMCA provides weight management programs, such as Diabetes Prevention Programs, at a community level with proven success rates with significant improvement in weight loss (Ackermann et al., 2011; Thorpe and Yang, 2011). More information about the YMCA is provided in Chapter 6. Appel and colleagues (2011) found that behavioral interventions, whether with in-person or remote support, garner significant weight loss. In-person support consists of one-on-one and group sessions with access to remote services. The remote intervention provides weight-loss support through a website, emails, and telephone support.
Weight Watchers International is an example of an effective community-based program. It follows Healthy People 2020’s guideline for a 10 percent improvement in healthy weight (HHS, 2011). Once the short-term goal is met, participants focus on long-term goals. The program educates participants in making healthy habits and food choices and ways to be active, and it provides emotional support, which involves cognitive-restructuring (Witherspoon and Rosenzweig, 2004). The program is widely used across the United States, making it accessible to users, and is relatively inexpensive compared with other corporate weight loss programs.
Respite care is “planned or emergency care to a child or adult with special needs in order to provide temporary relief to the family caregiver” (Virginia Department on Aging, 2011). Respite services are provided within many settings, including home, adult day care centers, or residential care facilities, and is the primary sector of family support and home- and community-based care services. Respite care programs are essential for maintaining strength within a family unit and act as an important resource within a long-term care system. “Respite care protects the health and well-being of both caregivers and care recipients” (Virginia Department on Aging, 2011).
For those caregivers in need, respite services reduce a substantial amount of stress. Based on an assessment of 23 appraisals of primary stressors (role captivity [Pearlin], overload [Pearlin and new], worry and strain, depression [CES-D], anger [Brief Symptom Inventory, and Pearlin], positive affect [positive and negative affect schedule]), one study found that those caregivers for a loved one living with dementia using respite services had significantly lower scores than did the control group on two of the three measures of primary appraisals (overload and strain) and two of the three measures of well-being (depression and anger). One year later, the treatment group still had significantly lower scores, most notably on overload and depression, than the control group had (Zarit et al., 1998). In general, caregivers for loved ones with dementia were found to experience far lower levels of stress when using
respite services than when not (Zarit et al., 1998). Evidence consistently demonstrates an improvement in stress level and overall quality of life (Collins and Swartz, 2011; Empeño et al., 2011), but also an improvement in confidence and a feeling of empowerment (Gitlin et al., 2006).
Despite questions regarding actual service efficiency, caregivers tend to strongly report satisfaction for the services offered (Schoenmakers et al., 2010). In one study, in-person interviews held 3 months and a year after services started indicate high levels of satisfaction for service features such as staff friendliness, program activities or meals and benefits and drawbacks such as focusing on the behaviors of a care receiver before and after attending the day program (Jarrott et al., 1999).
As the evidence shows, although respite services provide proven benefits, most caregivers feel that what’s out there is not enough (Paraponaris et al., 2011; Stirling et al., 2010). In addition, because a majority of those among lower socioeconomic status often experience difficulties in gaining access to these kinds of services, and because informal care consumes almost two-thirds of all care in a year, more services should be offered (Paraponaris et al., 2011).
The burden and demands of a chronic illness often reduce the patient’s ability to self-manage their illness. Inadequate illness control and self-management reduces the patient’s quality of life and increases poor psychological well-being (Bosworth et al., 2010). Peer support programs lend valuable firsthand experience knowledge to assist others with similar conditions in managing their own health (Ramirez and Turner, 2010). The focus of an illness is shifted from treatment to health promotion (Dennis, 2003). Evidence has consistently found that support groups are beneficial for addressing a variety of chronic illnesses—especially groups related to maintaining self-management regimens. These programs have been functioning since the 1970s and have been well documented (Boothroyd and Fisher, 2010). The Patient Protection and Affordable Care Act encourages peer support programs as part of community health initiatives.
Support ranges from remote assistance, including telephone, web-or email-based peer support, to face-to-face self-management programs (Ramirez and Turner, 2010). Such programs include assistance in learning and overcoming the challenges of diet, exercise and medication compliance, and self-monitoring illness control. Participants in diabetes peer support programs see success in decreased mean hemoglobin A1c levels, and initiation of insulin therapy (Ramirez and Turner, 2010). Peers for Progress, which originated from the WHO, promotes peer support as, “a
key part of health, health care, and prevention around the world” (Peers for Progress, [a]).
Social support has been demonstrated to be a protective factor of health, where social isolation—which the committee recognizes as a plausible consequence for person living with complex chronic illness—brings morbidity and mortality (Boothroyd and Fisher, 2010). Bosworth and colleagues (2010) discuss the important role of peer support in improving hypertension and cardiovascular disease, stating that patient self-management is “a crucial component of effective high-quality health care…. The patient must be a collaborator in this process, and methods of improving patients’ ability and confidence for self-management are needed.”
Caregivers of people living with chronic illnesses are greatly affected in numerous ways. Better than 65 million people in the United States are caregivers, or 29 percent of the total U.S. adult population (NAC, [a]). Family caregivers feel extreme stress, often leading to caregivers experiencing higher levels of depression, higher probability of chronic illnesses, premature aging, familial financial problems, and lower levels overall of well-being (NFCA, [a]). Additionally, caregivers experience higher rates of poverty, have lower income, and have higher out-of-pocket health care expenses. Six out of ten family caregivers are employed (NFCA, [a]).
Supporting caregivers is important for protecting their health and that of the person they are caring for. A sense of empowerment, acceptance of help from those around them, and prioritization of one’s own health offers the best hope in maintaining caregivers’ and dependents’ mental and physical health (Carcone et al., 2011; Gitlin et al., 2006; Graff et al., 2007).
Supporting caregivers involves interventions with a multifaceted approach. A coach or mentor can provide training to build confidence and skills to be better advocates in activities of daily living with a chronic illness. Peer connections made among caregivers reduces feelings of isolation for caregivers (Amdur, 2011). Organizations such as the National Family Caregivers Association provide resources for caregivers to educate themselves as well as to connect with other caregivers and, ultimately, to empower those caring for others living with chronic illness.
As discussed earlier in this chapter, a number of community-based interventions have been developed and evaluated for their efficacy in serving individuals with chronic illness. These evidence-based programs include lifestyle interventions for physical activity, smoking cessation, and diet and
nutrition, as well as other living-well interventions, such as disease self-management. Many of these programs have been rigorously evaluated in trials, but they have not been widely disseminated. As noted by Chambers and Kerner, “tested interventions are underutilized. Used interventions are under-tested” (Chambers and Kerner, 2007; Schillinger, 2010). Programs and interventions are not brought to scale for multiple, interacting reasons, including social, economic, cultural, and organizational factors (Glasgow and Emmons, 2007). In general, health promotion interventions that have been proven to be efficacious have tended to be intensive and demanding for both participants and program delivery staff (Glasgow and Emmons, 2007). The committee has included an article that discusses new models of health care and community-based programs to improve the functional autonomy and lives of those living with chronic illness (see Appendix B).
To ensure that more interventions designed to help individuals with chronic illness live well can be brought to the most people, more attention needs to be paid to the barriers to translating research into practice. Lack of dissemination and evaluation research and policy advocacy is one component that limits the impact of evidenced-based physical activity interventions on public health (Owen et al., 2006), particularly underserved groups. Evidence-based interventions recommended by government advisory bodies have proved to be less effective or ineffective in the aged, racial and ethnic minorities, and low-income groups, who experience a high burden of chronic illness and are among the most sedentary and understudied populations (Yancey et al., 2006). There are sociocultural, physical, economic, and environmental barriers to engaging certain evidenced-based interventions, like physical activity and exercise, with the elderly, racial and ethnic minorities, and low-income groups. Successful engagement of underserved populations in health-promoting evidenced-based interventions requires careful balance between embracing customs and values and recognizing the nonmonolithic nature of any sociodemographic group (Yancey et al., 2006).
To date, the focus on the efficacy of interventions rather than the effectiveness of interventions has resulted in sacrificing external validity in the hope of maximizing internal validity (Schillinger, 2010). Characteristics of the intervention, the target settings, the research or evaluation design, and the interactions of all three of these are areas that could potentially be addressed by public health researchers (Glasgow and Emmons, 2007). Interventions that are expensive, time- and staff-intensive, specific to a particular setting, not packaged for easy delivery or not customizable, difficult to learn, and not designed to be self-sustaining are difficult to bring to scale (Glasgow and Emmons, 2007). A theorem by Rose suggests that one solution to making sure interventions reach more individuals and diverse populations is to replace intensive interventions that engage fewer people with low-cost interventions (with frequent contact) that engage more people
(Schillinger, 2010). Although some level of intensity of intervention is desirable, the minimal intensity needed for change, rather than the maximum intensity, should be the focus of program designers (Schillinger, 2010).
Some of the issues related to program delivery that can result in huge barriers for scalability include competing demands for staff, financial or organizational instability, limited resources, time and organizational support, perverse incentives or regulations, and the specific needs of clients and the setting (Glasgow and Emmons, 2007; Glasgow et al., 2003). When program designers do not describe modifications of the intervention that are permissible, it can be difficult for practice settings that do not have the infrastructure or support of the trial settings to deliver the intervention with fidelity. It has been suggested that program designers should collect more process evaluation data to help make recommendations regarding program modifications (Schillinger, 2010).
Some of the other elements of the research design that can limit translation of programs include the failure to evaluate cost and reach or to assess adoption, implementation, maintenance, and sustainability. Recommendations have recently been made that interventions should be developed from the outset with dissemination and scalability in mind, with greater attention paid to replication and robustness (Kessler and Glasgow, 2011; Kleges et al., 2005).There are considerable challenges to assessing community and public health interventions, and the evidence is often far from complete (Community Preventive Services Task Force, 2005b; Leyland, 2010; Weatherly et al., 2009). Reasons for this include an insufficient number of studies on a given theme; the lack of truly experimental or even quasi-experimental designs; inclusion of inadequately representative study communities; inadequate statistical power for many study outcomes, including the primary one of interest; the short-term nature of many evaluations; the difficulty of replicating complex intervention protocols (Bell et al., 2007); and the uncertainty of outcomes outside those being directly addressed. In some deprived neighborhoods, often the target of public health interventions, it may not be logistically possible to conduct rigorous evaluations (Abbema et al., 2004). These challenges also apply to evaluation of cost-effectiveness, in which common problems include determining attribution of effects directly to the interventions, measuring and valuing the outcomes, calculating costs and consequences across many economic sectors—a particular problem for the Health in All Policy movement (Finland Ministry of Social and Health Affairs and European Observatory on Health Systems and Policies, 2006)—and taking equity into consideration (Weatherly et al., 2009). With respect to equity, it is possible for an intervention to have a net positive community effect and still perpetuate or even exacerbate disparities
across various socioeconomic groups with respect to salient effects of the intervention. It must also be acknowledged that societal and individual perspectives may differ when it comes to what constitutes a life well lived with chronic illness. For example, although many physically inactive persons may wish to be active but are not for a variety of individual and societal reasons, others may be quite comfortable with their inactivity, and their wishes must be respected.
Another problem that occurs with assessing community interventions is the lack of attention or the inability to measure adverse effects of the intervention. Unlike studies of clinical interventions, in which all exposed can be routinely followed for a broad range of adverse health outcomes, evaluative studies of community respondents may involve many individuals who may have had adverse effects from the intervention but are never sampled or studied. Perhaps more importantly, it may not be possible to even anticipate potential adverse effects in community intervention programs; investigators may not even seek them, assuming that an educational or helping program could not encompass unwelcome effects. Some of this may result from inadequate formative evaluation of intervention programs (Whitehead, 2002) and the failure to do qualitative interviewing of groups and individuals exposed to the experimental intervention. Although CDC’s Community Guide clearly notes the prospect of adverse effects (Community Preventive Services Task Force, 2005b), many of the “logic diagrams” of specific intervention do not even consider the possibility that they occur. Evaluation summaries that include such comments as “no adverse effects were found” often do not review the depth with which a search was conducted, over and above the possibility that the major effect was in the wrong direction.
Given this situation, it is difficult to know how many adverse effects were sought or evaluated, but examples exist. Pediatricians have anecdotally noted that some children were distraught after a school tobacco education program because they feared their parents who smoke would die. The whole issue of harm reduction, particularly aimed at substance abuse interventions, often generates substantial resistance in various community segments (Logan and Marlatt, 2010) such as for condom use or needle-sharing interventions, despite evidence of at least partial effectiveness.
The major message here is to acknowledge and anticipate that adverse effects of community interventions can occur. These adverse effects should be indentified to ensure that when the interventions become part of public health practice, they will not be impeded by such effects at a time of limited resources. As in clinical research, these adverse effects need not be a reason to avoid their incumbent programs, but they must be recognized and managed by the appropriate intervening organizations.
Like everyone, persons living with chronic illness need effective interventions aimed at prevention and early detection of additional illness. These interventions include healthy lifestyle behaviors (physical activity, healthy eating, maintenance of healthy weight, and tobacco avoidance), vaccination, screening, and chemoprevention. Issues in developing these interventions include their effectiveness in, their adaptation for, and their long-term maintenance among persons 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.
Persons living with chronic illness also need interventions aimed at controlling and limiting the effects of their illness. This chapter has explored the effectiveness of self-management, disease management, treatment adherence management, complementary and alternative medicine, cognitive training, and approaches to improving access and mobility. A large number of effective interventions have been developed, but important issues for further research include adaptation for specific illnesses and the relative cost-effectiveness of effective interventions.
Once interventions for both prevention of additional illness and control of existing illness are developed and shown to be effective, the hardest work begins. This is the work of scale-up, so that effective interventions reach all those in need, especially disadvantaged populations who are disproportionately affected by chronic illness. This work requires a different set of research that evaluates outcomes at both the individual level and the level of organizations seeking to disseminate and implement effective interventions. The public health community should join with health care systems and community organizations in giving much more attention to scale-up and the dissemination and implementation research required to achieve it. The statement of task asks the committee to consider which population-based interventions can help achieve outcomes that maintain or improve quality of life, functioning, and disability?
• What is the evidence on effectiveness of interventions on these outcomes?
• To what extent do the interventions that address these outcomes also affect clinical outcomes?
• To what extent can policy, environmental, and systems change achieve these outcomes?
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.
The committee recommends that all major CDC-funded research programs 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, management of existing illness, and efforts to prevent subsequent illnesses.
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, appropriate weight, effective health care) in persons with chronic illness.
Support should be provided for implementation research on how to disseminate effective long-term lifestyle interventions in community-based settings that improve living well with chronic illness.
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 public health interventions for populations experiencing health disparities should be identified and addressed.
• When interventions typically result in positive health outcomes for the general population of individuals living with chronic illness, they should be assessed and modified for adaptation and implementation in communities experiencing disparities in health outcomes.
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