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), 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), "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), 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...