Toward a more comprehensive understanding of the emotional side of type 2 diabetes: A re-envisioning of the assessment of diabetes distress

Abstract

Aims: To develop an updated, more theoretically sound system for describing and assessing diabetes-related emotional distress (DD) in adults with type 2 diabetes (T2D).

Methods: Items were developed from qualitative interviews with 11 adults with T2D and 6 clinicians, then categorized as reflecting a core emotional experience of DD or a primary source of DD. Items were then administered to a national sample of TCOYD Registry participants. Data were analyzed using both exploratory (EFA) and confirmatory (CFA) factor analyses. Reliability (alpha) and construct validity also were assessed.

Results: EFAs with 599 adults (258 insulin users, 341 non-insulin users) yielded a coherent DD Core scale and 7 DD Source scales (management demands, healthcare provider, hypoglycemia, long-term health, interpersonal issues, shame/stigma, healthcare access), which were confirmed by CFA. All alphas were >0.65. DD Core and DD Source scales were associated with criterion variables (all p < .001). Higher DD Core scores were linked to higher HbA_1c, BMI, more frequent severe hypoglycemia, and poorer self-management (all p < .001).

Conclusions: Good reliability and validity were found for this two-part T2DD Assessment System. It reflects a more contemporary and actionable approach to DD assessment that distinguishes between its key emotional dimension and its underlying contributors.

Keywords: Assessment; Diabetes distress; Patient-reported outcomes; Self-management; Type 2 diabetes.