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Task Force on Community Preventive Services. The Guide to Community Preventive Services. Atlanta (GA): Centers for Disease Control and Prevention; 1999-.

  • This publication is provided for historical reference only and the information may be out of date.

This publication is provided for historical reference only and the information may be out of date.

Cover of The Guide to Community Preventive Services

The Guide to Community Preventive Services.

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Working toward the next generation of diabetes self-management education

, MS, RN, CDE and , EdD.

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Published: May 2002.

Introduction

Approximately 16 million people have diabetes in the United States, about two thirds of whom have been diagnosed. As the seventh leading cause of death, diabetes is extraordinarily costly with estimates of its total costs approaching or exceeding $100 billion. Increasingly, providers, payers, policymakers, and purchasers of health care recognize diabetes as one of the most prevalent and expensive healthcare problems we face as a nation.

Sadly, despite the increased availability of improved therapeutic options and the growing recognition that diabetes is a serious public health problem, care for people with diabetes remains deficient. Most patients do not receive the level of health care that is recommended and are, therefore, not able to achieve optimal outcomes. 1, 2, 3, 4, 5 Because our healthcare system is designed to diagnose and treat acute healthcare problems, chronic diseases, particularly those that are asymptomatic, may not receive the attention necessary for effective daily management and to prevent or detect, or both, long-term complications. In addition, many clinical practices are not designed to provide the training and support patients need to effectively care for and live with diabetes. The gap between what we know how to do and what actually occurs is a source of frustration for both patients and healthcare professionals.

Because the daily care for diabetes is carried out almost entirely by the person with diabetes, two critical factors are needed for achieving optimal care and obtaining desired outcomes. The first factor is to prepare patients to be effective self-managers of their diabetes by providing them with the information and support necessary to make informed decisions about the costs and benefits of various treatment options. The second factor is through health systems approaches that facilitate the ongoing monitoring, support, and routine care that a chronic illness such as diabetes requires. The Task Force on Community Preventive Services (the Task Force) is to be applauded for choosing to concentrate on recommendations about self-management education and health systems interventions, including case management.

Self-management education

Self-management education is essential for effective diabetes self-care. Patient education is necessary because diabetes is serious, largely self-managed, and a personal responsibility. In addition, diabetes self-management is usually complex and emotionally challenging. Patients need to know and understand diabetes and its management, available treatment options, personal costs and benefits of various therapeutic approaches, and behavior change and problem-solving strategies. In addition, they need to understand their own goals, values, and feelings related to diabetes; their role as decision makers; and how to assume responsibility for day-to-day diabetes care.

Several meta-analyses and technical reviews have demonstrated that, although traditional diabetes education is effective, 6, 7 education is even more effective when it incorporates behavioral and psychosocial strategies. 8, 9, 10 Although more work needs to be done in this area, the documentation of the efficacy of patient education provided support for new reimbursement guidelines through Centers for Medicare and Medicaid Services (CMS) and state-legislated mandates for almost all states. Because of these significant and continuing advocacy efforts, the availability of quality diabetes self-management programs has greatly increased. Although more programs are needed, it is essential to make these programs available in ways that are effective for the diverse and often needy patients who are affected by diabetes. Recommendations about community-based education offer important avenues for diabetes educators and health systems to meet the needs of their target population.

Community-based self-management education

Diabetes is cared for on a daily basis in the psychological and physical world of the person with diabetes. The psychological world is made up of health-related priorities and experiences, religion, ethnicity, gender, socioeconomic status, and so forth. The physical world refers to the neighborhood and community in which patients live, as well as places they spend a substantial amount of time such as home, school, or work. Diabetes self-management not only has to fit the illness, but it also has to fit with the psychological and physical world of the patient if it is to be effective over the long term. Therefore, a community-based approach to diabetes self-management education offers some special advantages. This approach allows health professionals to have a direct experience with the community where their patients are caring for their diabetes. Such knowledge can help diabetes educators tailor the self-management education to the reality of their patients’ environment. Also, patients learning diabetes self-management in their own communities are receiving an important contextual message. The message that is conveyed is that diabetes self-management is a part of everyday life as opposed to the message given when patient education classes are held at a psychologically, socially, or physically distant medical center. These factors strongly influenced our decision to develop and utilize a community-based approach to diabetes self-management education.

We are in the last year of an urban, community-based, diabetes self-management education program for African Americans that uses a culturally appropriate problem-based curriculum. The diabetes self-management program is led by a nurse and dietitian, who are Certified Diabetes Educators. The program consists of a series of six session 2 hours in length held in a community location, such as a church, a community center, or senior housing complex. Participants are recruited through flyers, postings, and newspaper advertisements near the location where the education will be provided. Group sessions are held with six to eighteen participants.

Session one begins with a discussion of diabetes as a serious, self-managed illness that requires an equal partnership between the person with diabetes and the healthcare team. We acknowledge the difference between the educator’s knowing what is best for diabetes and the participants knowing what is best for them on the basis of their priorities, needs, and circumstances. Our belief that the creation of a partnership is essential for an effective therapeutic relationship is described. After this discussion, participants are asked to identify why they came to the group and what they hope to learn. We then provide each participant with a report that lists and describes laboratory values pertinent to diabetes, normal or ideal results, and the results of their recent tests, as well as ideas about what they can do to change those results. After the participants review the reports, the educator asks if there are questions. Education is provided through the response to the questions. For example, questions about hemoglobin A1c values may lead to a discussion of the pathophysiology of diabetes, blood glucose fluctuations, risk of complications, home blood glucose monitoring, and factors that affect blood glucose. Questions about lipid results may lead to a review of information about each of the reported values, pathology, risks of cardiovascular disease among people with diabetes, and risk reduction strategies, including meal planning and smoking cessation. After a discussion of how to set goals, the session ends by asking each person to state a short-term goal as a behavioral experiment on which to work during the following week.

Each of the remaining sessions begins with a discussion of patients’ efforts toward achieving the goals chosen the previous week. These experiences and other questions that are asked during the session are used to present diabetes content and discuss psychosocial, coping, and other issues identified by the group. The areas discussed are noted so that at the last session any topics recommended to meet standards for self-management education not already addressed can be discussed.

A key message we frequently reinforce is that diabetes is not about lifestyle but about helping patients maintain quality of life while managing diabetes and caring for their overall health. Psychosocial and clinical issues are discussed at the same time. 11 The educators take advantage of the questions and issues that are raised to discuss both clinical and psychosocial issues relevant for that issue. For example, during the initial discussion of diabetes as a serious illness from a clinical perspective, one participant related an incident in which a family member told her that she took her diabetes too seriously. This experience was used to discuss social support and to conduct a group activity in which participants listed supportive and nonsupportive people and activities and the importance of balancing the positive and negative aspects of our lives.

At the end of the session, participants are offered the option of follow-up through a community-based support group or through telephone contact with a nurse Certified Diabetes Educator. Support group sessions focus on issues identified by patients related to their ongoing efforts to change behavior and their health and diabetes-specific concerns. Telephone follow-up is focused on ongoing goal-setting and behavior change efforts and problem-solving. Referrals for additional care are suggested as needed.

This type of program has several advantages when applied to a chronic illness such as diabetes. First, it is patient centered rather than provider centered. Information about diabetes self-management is presented in response to questions from participants rather than in lectures. The education is focused around meeting the patients’ needs and responding to their identified concerns. It eliminates the counterproductive concepts such as compliance and adherence because patients work toward self-selected goals and not those selected by the health professional. Both patients and professionals are less frustrated when diabetes care is examined and cared for in this model because it matches the reality of diabetes care.

Community-based self-management education has both costs and benefits. On the plus side, this approach allows for a self-management education program that is readily accessible to the target audience, is perceived as relevant and tailored to the needs of both individual patients and communities, and facilitates the incorporation of patients’ experiences of living with diabetes into the curriculum. However, there are also costs to this approach. The primary disadvantage is the likelihood that the program will be, and be perceived, as distinct from the participants’ ongoing health care. To be most effective, diabetes self-management education needs to be woven seamlessly into the fabric of the patients’ overall health and healthcare system. Having a community-based education program that is only tangentially related to the patients’ healthcare system increases the likelihood that it will be viewed by both patients and providers as an optional, one-time event appropriate for only some patients. This problem is exacerbated because many of the patients in our community-based program receive their care from different healthcare systems and receive their reimbursement (if any) for self-management education from a variety of private and governmental third-party payers. As with so many of the barriers to appropriate chronic disease care, this problem can only be truly solved by changes at the health systems and policy level, so that education and ongoing care are closely linked.

Effective self-management education and disease management are based on collaborative models of care that emphasize empowering patients to find their own solutions. It recognizes that we do not help people with chronic illnesses solve problems or make lasting changes in their lives by simply telling them what they should do. Effective self-management of diabetes requires our patients to find their own solutions and motivation to care for their diabetes. When we assess our patients’ goals, capabilities, priorities, skills, support, and barriers and actively support their efforts to achieve their own goals, we are delivering collaborative care. This approach leads to high levels of patient commitment and motivation that result in positive outcomes and a mutually rewarding relationship.

Supported in part by the National Institutes of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health (grant NIH 5P60-DK20572).

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