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

Abstract

BackgroundDiabetes 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. ObjectivesTo clarify the conceptualization and operationalization of diabetes distress, identify and distinguish relevant measures, and evaluate their appropriateness for this purpose. ResultsThree measure 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 is reported of the qualitative work informing scale design, raising concerns about content validity. ConclusionsAcross 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.

Development and Psychometric Properties of the Inflammatory Bowel Disease Distress Scale (IBD-DS): A New Tool to Measure Disease-Specific Distress

“…Test data analysis shows IBD-DS scores to have a significant positive correlation (all p<0.001) with existing validated tools. Indications are that the new IBD-DS detects and measures disease-related distress in IBD, as the DDS 35 does for diabetes 6 .…”

“…Disease specific distress is conceptually different from other commonly assessed patient reported outcomes such as quality of life and depression, because it derives purely from the disease itself and not from any extraneous factors. Different types of intervention may be required to manage it 6 . The IBD-DS addresses distress associated with the unique features of living with this specific disease, rather than the more generic aspects of emotional wellbeing addressed in the HADS.…”

“…Disease-related distress has been identified and researched extensively in other chronic conditions including diabetes [5][6][7][8][9] , asthma 10,11 , cancer [12][13][14] and multiple sclerosis 15 . Earlier work from this study team has identified and reported the phenomenon in people with IBD 16 .…”

“…Earlier work from this study team has identified and reported the phenomenon in people with IBD 16 . Studies reporting 'psychological distress' in IBD have often measured only anxiety and depression 17,18 , although evidence from diabetes 19 , cancer 13 , and multiple sclerosis 15 demonstrates that whilst it may be related, disease-related distress is distinct from anxiety and depression 6 . However, unlike anxiety and depression, disease specific distress is not a diagnosable condition in the DSM Manual of Psychiatric Diagnoses 20 .…”

Twenty‐five years of diabetes distress research

“…FIGURE 1 Estimated distribution of prevalence of depression and distress in people with diabetes. Estimates derived from meta-analysis, systematic reviews, narrative reviews and empirical studies of selfreported instruments, for distress and depression [2,5,7,15,28,30,31].…”