Diabetes distress and quality of life in adults with diabetes

Abstract

In this chapter, we discuss the importance of considering patient-reported outcomes (PROs) alongside surrogate measures to better assess benefits and potential costs of diabetes treatments in terms that matter to patients. Two central PROs in diabetes research and care include diabetes distress (DD) and quality of life (QOL). We begin by providing an overview of DD, discuss its association with depression and important diabetes outcomes, and review available DD measures. Next, we provide an overview of QOL measurement in diabetes and focus on health-related quality of life (HRQOL); discuss its differentiation from health status, its relationship to DD, and other diabetes outcomes; and provide recommendations for how to select an appropriate measure. In addition, we describe cultural, social, and demographic factors in relation to DD and HRQOL. Finally, we discuss conclusions and future directions in diabetes DD and HRQOL research. We conclude that PROs such as DD and QOL have emerged as valid, reliable, and meaningful constructs reflecting aspects of a patient’s health and well-being that are not captured by physiological measures alone. To ensure the best use of these PROs, it is imperative that conceptual clarity is improved, particularly when considering HRQOL, and that PRO measure construction and revision follow US Food and Drug Administration recommendations. PRO assessment undoubtedly improves clinical practices and is essential to truly move toward a patient-centered model of diabetes prevention and care.