Volume 13 Number , 2000, Page 21
Diabetes and Quality of Life
Richard R. Rubin, PhD, CDE
Diabetes is a demanding disease. As my son, who has had diabetes for more than 20 years, once told me, "At least once every 15 minutes, I have to deal with my diabetes. I have to stop what I'm doing, think about how I'm feeling, try to remember when and what I last ate, think about what I'll be doing next, and decide whether to test my blood. Then, depending on the results of the test (or my guess as to my sugar level), I'll plan when to eat or take my next insulin bolus." Can anything so ubiquitous as diabetes and its management not affect a person's quality of life, a person's ability to function and to derive satisfaction from doing so?
Naturally, the life of every person with diabetes is unique. Not many of our patients manage their diabetes as actively or effectively as my son does. But almost every person with diabetes I have ever met feels that diabetes powerfully affects their lives, and most feel burdened by the manifold demands of their disease. I call this experience "diabetes overwhelmus," since so many people feel overwhelmed by the continuous burden of their disease and its management. These emotional and social burdens may be compounded by the acute physical distress of hypoglycemia or hyperglycemia and by the chronic physical distress of diabetes-related complications.
What is quality of life? So it seems clear that diabetes can affect a person's quality of life. But what is quality of life? Several articles in this From Research to Practice section raise this question. The authors of these articles caution us to think clearly about what is being measured when various researchers say they are studying quality of life. In the most general terms, quality of life may be thought of as a multidimensional construct incorporating an individual's subjective perception of physical, emotional, and social well-being, including both a cognitive component (satisfaction) and an emotional component (happiness.)
Health-related quality of life and diabetes-specific quality of life represent increasingly narrower concepts. As William Polonsky points out (p. 36, Understanding and Assessing Diabetes-Specific Qualilty of Life), there is currently no "gold standard" for the assessment of overall, health-related, or diabetes-specific quality of life. Yet our efforts to develop such gold standards should continue unabated. As Frank Snoek states in his article (p. 24, Quality of Life: A Closer Look at Measuring Patients' Well-Being), "The development of valid, reliable, user-friendly quality of life assessment procedures can help facilitate the integration of quality of life measurement into diabetes care." In her article (p. 29, Quality-of-Life Assessment in Diabetes Research: Interpreting the Magnitude and Meaning of Treatmen Effects), Marcia Testa discusses the uses of quality-of-life assessment in diabetes care and the interpretation of treatment effects on quality of life.
Why is quality of life important in diabetes? Quality of life has importance for people with diabetes and their health care providers for several reasons. First, many people tell me that when they suffer from diabetes overwhelmus (i.e., poor quality of life), they often take a "to hell with it!" attitude toward their self-care, doing less than they should to manage their diabetes. Unfortunately, as one of my patients said, "When you take a to-hell-with-it attitude toward your diabetes, that's straight where you go." Diabetes overwhelmus leads to diminished self-care, which in turn leads to worsened glycemic control, increased risks for complications, and exacerbation of diabetes overwhelmus in both the short run and the long run. Thus, quality-of-life issues are crucially important, because they may powerfully predict an individual's capacity to manage his disease and maintain long-term health and well-being.
As Alan Delamater points out in his article (p. 42, Quality of Life in Youths with Diabetes), these issues are especially critical for children and adolescents, who will probably spend many years living with diabetes. There is now good evidence that, among people with diabetes, psychosocial factors such as depression are stronger predictors of medical outcomes such as hospitalization and death than are physical and metabolic factors such as presence of complications, body mass index, or HbA1c level.1
Quality of life is also increasingly recognized as an important health outcome in its own right, representing the ultimate goal of all health interventions. More than 50 years ago, the World Health Organization stated that health was defined not only by the absence of disease and infirmity, but also by the presence of physical, mental, and social well-being.2 Though health care providers sometimes focus on medical outcomes alone when assessing the efficacy of their interventions, any person with diabetes will tell you that these outcomes are truly meaningful only to the extent that they affect physical, emotional, and social well-being--that is, quality of life. Dr. Polonsky speaks to this issue in his article.
Recent developments in the fields of health outcomes research and health technology assessment have also stimulated interest in quality-of-life evaluation as a clinical research tool. Managed care organizations want to know whether the costs associated with various interventions are justified, often within fairly brief time frames. As a result, researchers and health plan administrators are focusing on relatively short-term patient outcomes, often including functional health status, satisfaction with health care, and overall quality of life.
I see the growing interest in health-related quality of life in general and diabetes-related quality of life in particular as a positive trend. This trend reflects a deeper understanding and appreciation of the crucial role of behavioral and psychosocial factors in the lives of our patients.3,4 We all recognize that diabetes can affect our patients' quality of life, and that perceived quality of life can powerfully affect a person's commitment to active diabetes self-management. Our growing awareness of the importance of quality of life in diabetes has led researchers to ask a broad range of questions concerning their interrelationships. This From Research to Practice section represents an effort to raise and address some of the most interesting of these questions.
Quality of life and diabetes: key findings. Before you go on to the articles that follow this preface, I would like to note some key results of a comprehensive literature review on quality of life and diabetes that I recently published with Mark Peyrot.5
1. Does diabetes affect quality of life?
People with type 1 diabetes generally report better physical functioning and more energy than those with type 2 diabetes, though these differences are probably the result of factors that are associated with diabetes type, such as age or even treatment regimen. This reminds us of the frequently complex interplay among factors that influence quality of life.
For those with type 2 diabetes, treatment intensification from diet alone to oral agents to insulin does seem to be associated with reduced quality of life.
For people with type 1 diabetes, some studies, including those conducted as part of the Diabetes Control and Complications Trial, indicate that treatment intensification has no effect on quality of life. Other work suggests that intensification may enhance quality of life by reducing the immediate and chronic effects of hyperglycemia. Still other studies suggest that the relationship between treatment intensity and quality of life may be curvilinear for people who have type 1 diabetes, since very intensive regimens may reduce quality of life through highly demanding self-care regimens and increased incidence of hypoglycemia.
2. Is glycemic control related to quality of
3. Are demographic variables or psychosocial
factors related to quality of life?
Some psychosocial factors, including health-related beliefs, social support, coping style, and personality type may have a potent effect on quality of life. These effects may be direct, or they may be indirect, buffering the negative impact of diabetes or its demands. In fact, these psychosocial factors may be the most powerful predictors of quality of life, often outweighing the effects of important disease-related factors, such as complications.6-10
4. Can quality of life in people with diabetes
The future of quality of life and diabetes in research and care. I believe quality-of-life research in diabetes will begin to realize its potential when we can design, implement, and evaluate interventions that influence factors that affect quality of life. Among these factors, coping skills may be the critical one. It appears that active and effective disease-specific coping can trigger a positive cascade of enhanced well-being, more active diabetes self-management, better glycemic control, and fewer complications. This suggests that people with diabetes who are not active or effective copers may benefit from interventions designed to enhance their coping skills. Lorraine Schafer discusses the importance of individual coping resources in this issue's Lifestyle and Behavior department.
Mark Peyrot, Christopher Saudek, and I11 reported on the results of a 5-day outpatient education program that incorporated coping skills training interventions designed to improve some aspects of quality of life. This intervention significantly improved diabetes self-efficacy and emotional well-being (depression and anxiety) at follow-up, 6 months after the intervention was completed. Interventions such as this hold promise for improving a broad range of outcomes for people with diabetes.
2Constitution of the World Health Organization. In World Health Organization: Handbook of Basic Documents. 5th ed. Geneva, Palais des Nations, 1952, p. 3-20.
3Glasgow RE, Fisher EB, Anderson BJ, LaGreca A, Marrero D, Johnson SB, Rubin RR, Cox DJ: Behavioral science and diabetes: contributions and opportunities. Diabetes Care 22:832-43, 1999.
4Glasgow RE, Osteen VL: Evaluating diabetes education: are we measuring the most important outcomes? Diabetes Care 15:1423-32, 1992.
5Rubin RR, Peyrot M: Quality of life and diabetes. Diabetes Metab Res Rev 15:205-18, 1999.
6Peyrot M, Rubin RR: Persistence of depression in diabetic adults. Diabetes Care 22:448-52, 1999.
7Peyrot M, Rubin RR: Levels and risks of depression and anxiety symptomatology among diabetic adults. Diabetes Care 20:585-90, 1997.
8Rose M, Burkert U, Scholler G, Schirop T, Danzer G, Klapp BF: Determinants of quality of life of patients with diabetes under intensified insulin therapy. Diabetes Care 21:1876-83, 1998.
9Does van der FEE, Neeling de NJD, Snoek FJ, Kostense PJ, Bouter LM, Heine RJ: Symptoms and well-being in relation to glycemic control. Diabetes Care 19:204-10, 1996.
10Does van der FEE, Neeling de NJD, Snoek FJ, Grootenhuis PA, Kostense PJ, Bouter LM, Heine RJ: Randomized study of two different target levels of glycemic control within the acceptable range in type 2 diabetes. Diabetes Care 21:2085-93, 1998.
11Rubin RR, Peyrot M, Saudek CS: The effect of a diabetes education program incorporating coping skills training on emotional well-being and diabetes self-efficacy. Diabetes Educ 19:210-14, 1993.
Copyright © 2000 American Diabetes Association
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