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Self‐Management at the Tipping Point: Reaching 100,000 Americans with Evidence‐Based Programs

2013; Wiley; Volume: 61; Issue: 5 Linguagem: Inglês

10.1111/jgs.12239

1532-5415

Marcia G. Ory, Matthew Lee Smith, Kristie Patton, Kate Lorig, Wendy Zenker, Nancy Whitelaw,

Health Policy Implementation Science

Baby boomers are crossing the traditional "aging" threshold. More than 10,000 baby boomers now turn 65 each day. In turn, there is an increasing prevalence of chronic conditions, and more importantly, older adults are ever more likely to be living with multiple chronic conditions.1 It is important to recognize that, despite advances in medical care, individuals with chronic conditions live the majority of their lives outside of the healthcare system. Thus, it is critical for healthcare providers to be aware of ways in which their patients are managing—or failing to manage—their chronic conditions in their everyday lives. This editorial highlights the benefits of community-based self-management programs, discusses the results of a national rollout for one widely disseminated evidence-based program, and reflects upon the synergistic partnerships that need to be developed between healthcare providers and community service practitioners to create a seamless infrastructure to help expand delivery capacity and sustain such programs. There is accumulating documentation about the success of evidence-based self-management programs in helping people with the medical, role, and emotional management demands associated with chronic conditions.2 One of the most widely disseminated programs, the Stanford University Chronic Disease Self-Management Program (CDSMP), has been shown in randomized trials to improve symptoms such as pain, shortness of breath, and fatigue; improve ability to engage in everyday activities; reduce depression; enrich communication with healthcare providers; and decrease costly health care such as emergency department visits.3, 4 Drawing upon evidence-based principles of behavior change, CDSMP workshops consist of six 2.5-hour sessions delivered in small group settings (e.g., 10–16 participants) over a 6-week period. CDSMP is designed to help participants develop skills to manage symptoms and learn specific coping strategies using action planning and feedback, behavior modeling, problem-solving techniques, and decision-making. The program is well scripted, and two leaders who have successfully completed 4 days of training facilitate each workshop. Nevertheless, there is emerging concern about pervasive research-to-practice gaps in which programs developed in research settings fail to be translated into widespread practice in the "aging services network."5 This phrase describes a network of state units on aging, area agencies on aging, tribal organizations, and more than 30,000 community-based organizations (e.g., senior centers, social service agencies, faith-based organizations, senior housing) that serve older adults. Working together alongside the U.S. Administration on Aging, state health departments, state Medicaid agencies, and other public agencies, the aging services network is responsible for planning, administering, and providing a wide array of social, long-term care, and health-support services. It is this network of providers that has recognized the importance of being able to bring community-based self-management programs to scale to reach diverse populations of older adults who can benefit from participating in such programs. After 20 years of development and evaluation, CDSMP-type programs have gained traction and are now ready to be introduced nationally. Toward this end, the American Recovery and Reinvestment Act of 2009 (i.e., Recovery Act) Communities Putting Prevention to Work: Chronic Disease Self-Management Program initiative, led by the U.S. Administration on Aging in collaboration with the Centers for Disease Control and Prevention and the Centers for Medicare and Medicaid Services, allotted $32.5 million to support the translation of the Stanford program in 45 states, Puerto Rico, and the District of Columbia.6 The goal was to have 50,000 Americans complete at least four of six CDSMP sessions between 2010 and 2012 and to embed delivery structures into statewide systems. This editorial describes the first 100,000 participants who enrolled in this national initiative and reflects on what is needed for the continued widespread dissemination of evidence-based self-management programs. Within the first 24 months of this initiative, more than 100,000 middle-aged and older adults were reached through 9,305 workshops in 1,234 U.S. counties. Participants self-reported 2.2 chronic conditions, the most prevalent being hypertension (43.0%), arthritis (40.8%), diabetes mellitus (30.3%), and depression (19.5%). Participants were primarily female (77.7%), older (mean age 67; 31.7% aged ≥75), and from diverse ethnic and minority backgrounds. Approximately 17% self-identified as Hispanic, 66.4% as white, 21.5% as African American, 4.5% as Asian or Pacific Islander, and 1.6% as American Indian or Native Alaskan. Although the majority of participants attended CDSMP workshops delivered in English (89.3%), the program was also offered in Spanish, Chinese, Vietnamese, French, and Somali. Paralleling findings from the original randomized clinical trials, participation attendance was high, with approximately 75% attending at least four of the six sessions. Workshops were offered in many different settings, but the three most prevalent types were aging services settings (29.0%), healthcare settings (21.3%), and residential facilities (17.4%). This overview of the CDSMP national initiative documents the scalability of evidence-based, community-based self-management programs. The goal of having 50,000 completers was reached 4 months ahead of schedule, which reflects the capacity of the program delivery infrastructure and overwhelming demand for such services. Furthermore, the workshops engaged adults with a variety of conditions, of different ages, and from different cultural backgrounds, demonstrating that the program was acceptable to receiving adults and delivery agencies and that large numbers of participants can be reached when evidence-based programs are offered in convenient and familiar settings. The 100,000 enrollees and 75,000 completers, documented as of April 17, 2012, represent only the first waves of potential program adoptees. More people are participating each month through the ongoing national delivery system through the aging services network and partnering agencies built by the ARRA initiative. Although the aging services network has reached a tipping point with the current delivery infrastructure for program continuance, barriers exist to making self-management programs available to all who can benefit. It is critical to build stronger bridges between clinical and community care approaches, each of which tends to operate separately. For example, community programs are concerned about not getting enough referrals, whereas healthcare providers are frequently unaware of or distrustful of resources outside of the clinical setting. Adding to this concern is that most community programs are offered sporadically and that the referral mechanism may not be clear. One solution is to make scheduling of program offerings more routine (e.g., a new program will start the first Monday of every month) and widely advertise program logistics in the community and healthcare providers' offices. System changes that make it easier for doctors to recommend the program are critical because a doctor's recommendation has been shown to influence patient behavior, especially for older adults.7 Electronic medical records can be more effectively used to identify and refer eligible individuals to community classes, and referral information might be automatically printed in discharge summaries for individuals experiencing transitions in care. For healthcare providers to be trusting of specific programs, a range of educational activities are recommended to better identify and select evidence-based programs with well-documented positive outcomes. Careful targeting of programs is important because not all "self-management" programs may be effective for older adults. This will require a strengthening of partnerships between clinical, community, and academic stakeholders to identify expected outcomes for different types of individuals (e.g., determining whether a general versus disease-specific program would be most effective). As primary care medicine moves to an era of medical homes, it will be necessary to leverage resources outside of the clinical setting, and mechanisms need to be instituted so that healthcare providers can be kept informed of their patients' self-management activities. Healthcare and community care approaches that support open communication with activated patients, who in taking charge of their own health, can bridge the traditional care silos. There are several ways this might be accomplished. At the simplest level, each practice setting should recognize the importance of patient activation for chronic disease management.8 Second, each practice setting should establish a referral process to help inform patients about the availability and location of evidence-based programs such as CDSMP, which can help activate patients to better manage their own health. This might involve assigning an office medical assistant to help with making program referrals. Third, depending upon clinic resources, a formal counseling approach9 might be implemented within the office protocol to help assess current need for self-management programs, advise regarding availability of programs, agree and collaboratively set goals for attending programs, assist in locating a specific program, and arrange for follow-up. Lay-led but highly scripted self-management programs can be especially beneficial for reaching older adults in rural or underserved populations where there is often poorer access to health care and health promotion programs.10 Although there was a prior concern that it might be difficult to mount these programs in rural areas, almost one-quarter of CDSMP classes in this national program were delivered in rural settings. A final barrier is obtaining a sustainable funding source for self-management programs. The Administration on Aging has mandated that the majority of programs delivered with Older Americans Act Title IIID funding be evidence based. Although this has given evidence-based programs greater legitimacy, Older Americans Act funding for health promotion programs is limited, and leveraging with state and local or other funds will be necessary.11 Thus, similar incentives will be needed in other care sectors. Despite this initial success, three major challenges remain to widespread scalability and sustainability of evidence-based chronic disease self-management programs. First, such self-management programs must become easier to find for the public needing such programs and the healthcare communities planning to deliver them. This can be accomplished only by creating a national web of interlinked programs that can be accessed from multiple entry points. This calls for stronger links between community organizations and between community and healthcare organizations. Second, there is a need for a nationally targeted awareness campaign to highlight program benefits inside and outside healthcare settings to accelerate their adoption. Finally, there is a need for multiple sustainable funding sources. These should include federal, state, and local funds; funding from third-party insurers and health care; and funding from employers, unions, and employer groups. We are optimistic that a national infrastructure is developing for delivering evidence-based self-management programs to older adults, but the aging services network cannot meet its goals alone. Stronger community–clinical partnerships are needed, and we challenge healthcare providers to become aware of and ask for evidence-based self-management programs that can help reduce the burden of chronic diseases in our rapidly escalating aging population. Only when broad-based dissemination transcends individual care sectors can chronic disease self-management meet its promise of assisting with the triple aim health goals of improving health, improving care, and reducing costs. The American Recovery and Reinvestment Act of 2009 (i.e., Recovery Act) Communities Putting Prevention to Work: Chronic Disease Self-Management Program initiative, led by the U.S. Administration on Aging in collaboration with the Centers for Disease Control and Prevention and the Centers for Medicare and Medicaid Services, allotted $32.5 million to support the translation of the Stanford program in 45 States, Puerto Rico, and the District of Columbia. The National Council on Aging served as the Technical Assistance Resource Center for this initiative and collected de-identified data on program participation. Conflict of Interest: The editor in chief has reviewed the conflict of interest checklist provided by the authors and has determined that the authors have no financial or any other kind of personal conflicts with this paper. All coauthors have received national grants primarily from the Administration on Aging, Atlantic Philanthropies, or Centers for Medicaid and Medicare Services to conduct research on the efficacy and effectiveness of the Stanford Chronic Disease Self-Management Program. Dr. Kate Lorig has written an implementation manual for which she receives royalties from Bull Publishers and Stanford University. Author Contributions: All authors were involved in the study concept and design. Nancy Whitelaw and Wendy Zenker were instrumental in data acquisition. Kristie Patton Kulinski and Matthew Smith helped analyze the data. Marcia Ory and Matthew Smith wrote substantial parts of the editorial. All authors contributed to and reviewed the text. Sponsor's Role: The primary sponsor (AoA as funder of the Communities Putting Prevention to Work: Chronic Disease Self-Management Program initiative) was not involved in the design, methods, subject recruitment, data collections, analysis, and preparation of paper.