With perhaps no disease is the individual's role so broad as in diabetes. Care of diabetes rests not only on healthy diet but also on sufficient physical activity; managing stress and negative mood; accommodating intercurrent illnesses; monitoring weight and blood sugar; medication management and adjustment in response to fluctuations in blood sugar; maintaining activities and interests of a healthy, satisfying life; and coordinating all of these through interacting with the health care system. All the while, the individual with diabetes must prepare for the vicissitudes of the disease, especially the fact that even with good metabolic control, complications can occur and, over time, become increasingly likely.
Diabetes is intrinsically progressive. Thus, added to the burdens of managing the disease itself are, often, the burdens of managing complications such as blindness, amputations, and sexual dysfunction as well as the other diseases to which diabetes often contributes such as kidney disease. Standing behind all of these, diabetes is a major risk factor for cardiovascular disease. Finally, there is no respite. Diabetes and most of its complications persist unto death—it is 24/7 for the rest of your life.
Managing the burdens and challenges of diabetes takes place in daily life, not in the clinic or operating room. Thus, the individual with diabetes has great responsibility to care for the disease, responsibility that professionals and others can lighten but not eliminate.
Diabetes management clearly requires health care and professional services. About 25% of adults with the disease go undiagnosed (Centers for Disease Control and Prevention, 2003). Early identification and treatment, with medication or with weight loss and physical activity can prevent or forestall the disease in those at risk (Diabetes Prevention Program Research Group, 2002). As the disease advances, medications to improve glucose metabolism or insulin become advantageous and, eventually, necessary to avoid the short-term impacts of high blood sugar and its long term impacts including cardiovascular disease, eye disease, and multiple other complications (The Diabetes Control and Complications Trial Research Group, 1995). The American Diabetes Association recommends that those with diabetes see their physicians at least three to four times each year to monitor their status, adjust medications and management plans, arrange for appropriate tests, and identify plans for other needed services or treatments. Thus, the individual cannot treat their own diabetes without help from physicians, other health professionals, and, as described below, responsive organizations and communities.
The Individual's Role
A variety of authors have articulated the role of the individual in diabetes management (Anderson & Funnell, 2000; Etzwiler, 1980, 1986; Hiss, 1986). The American Diabetes Association and the American Association of Diabetes Educators have used the term self-management for a number of years. For example, the American Diabetes Association criteria for registration of diabetes education programs refer to "Diabetes Self-Management Education" as "an integral component of diabetes care" (http:// diabetes.org/uedocuments/ReviewCriteria_IndicatorListing_9-2003.pdf) and the American Association of Diabetes Educators describes itself as "dedicated to integrating successful self-management as a key outcome in the care of people with diabetes..." (http://www.aadenet.org/About Us/aboutus.shtml/). Some have advocated the term "co-management" to capture the collaborative relationship between the patient and provider in developing, implementing, and changing management plans Anderson & Funnell, 2000).
Most writers in the field agree on several key aspects of the patient's and professional's roles in diabetes management. First is the centrality of the patient's behavior. Second is the fact that the patient's behavior cannot be dictated or guaranteed by clinicians or by clinical interventions. In an important sense of the term, diabetes management is the responsibility of the patient once the clinical encounter or patient education has ended and the patient has returned to the daily world in which she lives. Third, and following from the first two, it is best that the responsibility of the patient be acknowledged throughout the interchanges of clinical care and patient education. This acknowledgement needs to confer to the patient substantial authority in decision-making and guiding disease management. Accordingly, the professional role becomes not that of a director but an expert consultant to the patient's disease management.
Two major, multisite clinical trials have stimulated substantial recognition of the importance of behavior and self-management in diabetes care and its prevention. The Diabetes Control and Complications Trial compared usual care to extensive patient education, follow-up, and support for intensive insulin management and related strategies involving diet and physical activity. Results of the intensive treatment demonstrated that controlling blood sugar reduces complications of diabetes (The Diabetes Control and Complications Trial Research Group, 1995). Teaching patients to implement intensive glucose management and follow up to maintain those management patterns over the several years of the program (The Diabetes
Control and Complications Trial Research Group, 1993) were effective in controlling blood sugar and reducing complications. In the Diabetes Prevention Program, behavioral interventions to achieve modest weight loss (7% of body weight) and modest exercise (150 minutes per week) among high-risk individuals reduced conversion to type 2 diabetes by 58% relative to controls (Diabetes Prevention Program Research Group, 2002). Similar findings were also achieved with lifestyle interventions in Japan (Pan et al., 1997) and Finland (Tuomilehto et al., 2001).
In addition to these major research programs, an emerging medley of smaller studies have included group and individual self-management interventions and have achieved improvements in self-efficacy, self-management behaviors, metabolic control, patient satisfaction, and quality of life (Anderson, Funnell, Barr, Dedrick, & Davis, 1991; Anderson et al., 1995; Aubert, Herman, Waters, Moore, Sutton, Peterson et al., 1998; Clement, 1995; Greenfield, Kaplan, Ware, Yano, & Frank, 1988; Muhlhauser & Berger, 1993; Pieber et al., 1995; Rubin, Peyrot, & Saudek, 1989, 1993), including among older type 2 patients and ethnic minorities (Anderson, Funnell, et al., 1991; Glasgow, Toobert, & Hampson, 1991; Glasgow et al., 1992). Summarizing these and other studies, two important meta-anal-yses showed that self-management interventions could be successful in promoting improved management patterns among adults with type 2 diabetes (Norris, Engelgau, & Narayan, 2001) and that they were associated with improved metabolic control (Norris, Lau, Smith, Schmid, & Engelgau, 2002).
Over 30 years ago, writing about self-control began advancing the idea that individuals could learn skills that enabled them to control their own behavior. For example, an influential book in the field published in 1974 was titled: Self-Control: Power to the Person (Mahoney & Thoresen, 1974). This view leads to the expectation that, once mastery of such skills is established, the individual becomes somewhat independent of the envi-ronment—"power to the person." But data do not support this view. In contrast, evaluations of self-management programs have frequently identified that benefits are short-lived, fading substantially by 6 months to one year after programs end. This is probably most pronounced in programs applying self-management to weight loss and smoking cessation. The most prevalent long-term result of these is relapse (Perri & Foreyt, 2004).
Although disappointing to the expectation that learning self-management skills can enable individuals to achieve and sustain goals like weight loss indefinitely, research does point the way toward improving long-term benefits. However, the path is not through stronger self-control or better self-management skills but through recognition of the critical role of the environment and the settings of individuals' lives in sustaining desired behavior patterns.
After controlling for the influence of a variety of program features, major meta-analyses of self-management programs in diabetes (Norris et al., 2001, 2002) found that the only program feature that was uniquely predictive of success was duration of contact. "Interventions with regular reinforcement are more effective than one-time or short-term education" (Norris et al., 2001, p. 583). This mirrors meta-analyses in smoking cessation. As Kottke and his colleagues noted in a major 1988 review of smoking cessation interventions (Kottke, Battista, & DeFriese), "Success was not associated with novel or unusual interventions. It was the product of personalized smoking cessation advice and assistance, repeated in different forms by several sources over the longest feasible period" (p. 2888).
More recently, AHRQ reviews of interventions for smoking cessation have identified variety and duration of treatment as predictors of success (Fiore et al., 2000). Similarly, a meta-analysis of 74 programs aimed at any one of a variety of health risks or health promoting behaviors (e.g., breast self-examination) found that number of different communication channels, as well as patient education and behavioral self-monitoring, were predictive of success (Mullen, Green, & Persinger, 1985).
The importance of varied and sustained interventions was also apparent in the Diabetes Control and Complications Trial, described above. The success of this program in showing that metabolic control matters rested on the adherence levels it achieved. In turn, these relied on effective patient education and sustained support for intensive management. Participants received: (a) extensive training in the skills they needed to implement the intensive treatment, (b) individualized plans for maximizing glucose control (e.g., providing choices between use of insulin infusion pumps versus multiple injections according to patient preference and need), and (c) ongoing support for maintaining their intensive management plan from a prestigious and dedicated team of professionals (Santiago, 1993; The Diabetes Control and Complications Trial Research Group, 1995). At the close of the Diabetes Control and Complications Trial (DCCT), the critical role of this staff support was summarized by one participant quoted in the New York Times: "The team was the strongest part of the program. They are really there to help us through the tough times".
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