What is diabetes distress and how can we measure it? A narrative review and conceptual model

Abstract Background Diabetes distress is the negative emotional impact of living with diabetes. It has tangible clinical importance, being associated with sub-optimal self-care and glycemic control. Diabetes distress has been operationalized in various ways and several measures exist. Measurement clarity is needed for both scientific and clinical reasons. Objectives To clarify the conceptualization and operationalization of diabetes distress, identify and distinguish relevant measures, and evaluate their appropriateness for this purpose. Results Six measures were identified: Problem Areas in Diabetes (PAID) scale, Diabetes Distress Scale (DDS); Type I Diabetes Distress Scale (T1-DDS), Diabetes-specific Quality of Life Scale—Revised (DSQoLs-R) ‘Burden and Restrictions—Daily Hassles’ sub-scale, Well-being Questionnaire 28 (W-BQ 28) ‘Diabetes Well-being’ sub-scale, and Illness Perceptions Questionnaire—Revised (IPQ-R) ‘Emotional Representations’ sub-scale. Across these measures a broad spectrum of diabetes distress is captured, including distress associated with treatment regimen, food/eating, future/complications, hypoglycemia, social/interpersonal relationships, and healthcare professionals. No single measure appears fully comprehensive. Limited detail of the qualitative work informing scale design is reported, raising concerns about content validity. Conclusions Across the available measures diabetes distress is seemingly comprehensively assessed and measures should be considered in terms of their focus and scope to ensure the foci of interventions are appropriately targeted.