Emotional and quality-of-life aspects of diabetes management.
ABSTRACT Patients with diabetes commonly feel overwhelmed, frustrated, or "burned out" by the daily hassles of disease management and by the unending, often burdensome self-care demands. Many report feeling angry, guilty, or frightened about the disease, and often are unmotivated to complete diabetes self-care tasks. The toll of short- and long-term complications can make the disease even more burdensome. Not surprisingly, it is a consistent finding across studies that diabetes is associated with impaired health-related quality of life (HRQOL), measured in a variety of different ways. Importantly, the relationship between HRQOL and diabetes appears to be bidirectional. Both medical and psychosocial aspects of diabetes may negatively affect HRQOL; in turn, impaired HRQOL may negatively influence diabetes self-management. Unfortunately, the concept of HRQOL in diabetes remains unclear, making precise evaluation and intervention difficult. There is growing agreement that the focus of HRQOL assessment should be on the subjective burden of symptoms, not merely on the presence of objectively identifiable problems. Proper evaluation should include both generic and diabetes-specific elements of HRQOL. In this article, a comprehensive multidimensional model of HRQOL in diabetes involving six major components is introduced and described. Representative self-report questionnaires that may be valuable in assessing these components are also presented. Once the patient's most important HRQOL issues have been identified and prioritized, appropriate intervention becomes possible. The good news is that there are now a growing number of research-based interventions available for addressing almost all of the HRQOL impairments that may occur.
SourceAvailable from: Sami Saqf el Hait[Show abstract] [Hide abstract]
ABSTRACT: EDITORIAL The quality of a person’s life refers to the broadest range of human experience. As well as the influence of health, it includes personal finances, job, housing, personal relationships, political and cultural climate, traffic, environmental considerations, and much more . Health Related Quality of Life (HRQoL) is mainly concerned with just one particular aspect of quality of life that is how it may be affected by health and disease . In medicine, HRQoL refers to a person’s or group’s perceived physical and mental illness . Physicians use HRQoL to measure the effects of chronic illness in their patients, and to better understand how an illness interferes with a patient’s daily life .
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ABSTRACT: Diabetes is one of the chronic diseases that constitute the greatest disease burden in the world. The Swedish National Diabetes Register is an essential part of the diabetes care system. Currently it mainly records clinical outcomes, but here we describe how it has started to collect patient-reported outcome measures, complementing the standard registry data on clinical outcomes as a basis for evaluating diabetes care. Our aims were to develop a questionnaire to measure patient abilities and judgments of their experience of diabetes care, to describe a Swedish diabetes patient sample in terms of their abilities, judgments, and risk factors, and to characterize groups of patients with a need for improvement. Patient abilities and judgments were estimated using item response theory. Analyzing them together with standard risk factors for diabetes comorbidities showed that the different types of data describe different aspects of a patient’s situation. These aspects occasionally overlap, but not in any particularly useful way. They both provide important information to decision makers, and neither is necessarily more relevant than the other. Both should therefore be considered, to achieve a more complete evaluation of diabetes care and to promote person-centered care.International journal of environmental research and public health 11/2014; 11(12):12223-12246. DOI:10.3390/ijerph111212223 · 1.61 Impact Factor
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ABSTRACT: To identify the psychosocial experiences of diabetes, including negative accounts of diabetes and adaptive ways of coping from the perspective of the person with diabetes.RESEARCH DESIGN AND METHODS: Participants were 8,596 adults (1,368 with type 1 diabetes and 7,228 with type 2 diabetes) in the second Diabetes Attitudes, Wishes and Needs (DAWN2) study. Qualitative data were responses to open-ended survey questions about successes, challenges, and wishes for improvement in living with diabetes and about impactful experiences. Emergent coding developed with multinational collaborators identified thematic content about psychosocial aspects. The κ measure of interrater reliability was 0.72.RESULTS: Analysis identified two negative psychosocial themes: 1) anxiety/fear, worry about hypoglycemia and complications of diabetes, depression, and negative moods/hopelessness and 2) discrimination at work and public misunderstanding about diabetes. Two psychosocial themes demonstrated adaptive ways of coping with diabetes: 1) having a positive outlook and sense of resilience in the midst of having diabetes and 2) receiving psychosocial support through caring and compassionate family, friends, health care professionals, and other people with diabetes.CONCLUSIONS: The personal accounts give insight into the psychosocial experiences and coping strategies of people with diabetes and can inform efforts to meet those needs and capitalize on strengths.Diabetes Care 06/2014; 37(9). DOI:10.2337/dc13-2536 · 8.57 Impact Factor