title: 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.
  
  
  OBJECTIVE
  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.
authors.affiliation: Florence Nightingale Faculty of Nursing and Midwifery, Kings College London, 57 Waterloo Road, London, SE1 8WA, UK. Electronic address: k.dennick@ucl.ac.uk.
authors.forename: Kathryn
authors.initials: K
authors.lastname: Dennick
authors.affiliation: Florence Nightingale Faculty of Nursing and Midwifery, Kings College London, 57 Waterloo Road, London, SE1 8WA, UK.
authors.forename: Jackie
authors.initials: J
authors.lastname: Sturt
authors.affiliation: School of Psychology, Deakin University, 1 Gheringhap Street, Geelong, Victoria 3220, Australia; The Australian Centre for Behavioral Research in Diabetes, Diabetes Victoria, 570 Elizabeth Street, Melbourne, Victoria 3000, Australia; AHP Research, 16 Walden Way, Hornchurch, Essex, UK.
authors.forename: Jane
authors.initials: J
authors.lastname: Speight
mesh_terms: D003131:Combined Modality Therapy / Q000009:adverse effects / Q000523:psychology; D017281:Cost of Illness; D048909:Diabetes Complications / Q000517:prevention & control* / Q000523:psychology; D003922:Diabetes Mellitus, Type 1 / Q000150:complications / Q000523:psychology / Q000628:therapy*; D003924:Diabetes Mellitus, Type 2 / Q000150:complications / Q000523:psychology / Q000628:therapy*; D006801:Humans; D008960:Models, Psychological; D000072858:Psychosocial Support Systems; D011788:Quality of Life; D000073278:Self-Management / Q000523:psychology; D013315:Stress, Psychological / Q000150:complications / Q000209:etiology* / Q000523:psychology; D054928:Validation Studies as Topic
keywords: Conceptual model; Diabetes distress; Narrative review; Patient-reported outcome measures; Validity