Assessing the impact of diabetes on quality of life: what have the past 25 years taught us?

Over the past 25 years, there has been significant acknowledgement of the importance of assessing the impact of diabetes on quality of life. Yet, despite the development of several diabetes-specific quality-of-life measures, the challenges we faced in 1995 remain. There is little consensus on the definition of quality of life because of the complexity and subjectivity of the concept. General quality of life comprises several domains of life, and these are highly individualized. Assessing the impact of diabetes on these life domains adds to the complexity. While comprehensive diabetes-specific quality-of-life measures typically increase respondent burden, brief questionnaires may not capture all relevant/important domains. Today, the lack of resolution of these challenges may explain why the impact of diabetes on quality of life is not systematically assessed in research or clinical care. Few researchers report detailed rationales for assessment, there is often a mismatch between the concept of interest and the measure selected, and data are misinterpreted as assessing the impact of diabetes on quality of life when, in reality, related but distinct constructs have been assessed, such as diabetes distress, treatment satisfaction or health status. While significant efforts are being made to increase routine monitoring of psychological well-being and understand the lived experience, no guidelines currently recommend routine clinical assessment of diabetes-specific quality of life, and there is no consensus on which questionnaire(s) to use. The gaps identified in this review need urgent attention, starting with recognition that assessment of diabetes-specific quality of life is as important as biomedical markers, if we are to improve the lives of people with diabetes.