Recent advances in type 2 diabetes (T2D) care have led to changes in the lived experience of diabetes. Thus, an updated understanding of concomitant changes in diabetes distress (DD) and its measurement is now warranted. Toward this end, we developed a new measurement strategy and instrument to assess DD among adults with T2D: the T2-Diabetes Distress Assessment Tool.
Cognitive interviews with a diverse group of 11 T2D adults and 6 diabetes clinicians resulted in the development of 51 items that were administered through an online survey to a validation sample of 599 T2D adults from the TCOYD Research Registry. Included for construct validity were measures of affect (WHO-5, PHQ-8, PSS), hypoglycemic concerns (HABS), self-management (SDSCA), and clinical outcomes (A1C).
Item content suggested two broad categories: (1) the core affective experience of DD (T2-DD Core), e.g., feeling overwhelmed with diabetes, and (2) 7 contributors to DD (T2-DD Sources): concerns about hypoglycemia, complications, healthcare provider, management demands, interpersonal issues, shame and stigma, and diabetes care access.
The T2-DD Core items and each of the 7 T2-DD Sources items were submitted separately to an EFA with PROMAX rotation. Each analysis yielded a single, dominant factor. Poorly loaded and conceptually overlapping items were removed for parsimony. The final T2-DD Core measure (8 items) and each of the 7 T2-DD Sources measures (22 items in total) yielded acceptable alpha coefficients. T2-DD Core was significantly associated with all construct validity measures; while each of the 7 T2-DD Sources was associated with validity measures in expected areas (e.g., hypoglycemia with HABS). Results were similar for insulin users and non-insulin users.
In total, these scales comprise the T2-Diabetes Distress Assessment Tool, which provides a unique method of assessing two complementary and clinically relevant aspects of DD, based on T2D adults’ lived experience: the core level of DD and the specific sources of DD.
W. H. Polonsky: Advisory Panel; Self; Intarcia Therapeutics, Inc., Consultant; Self; Abbott Diabetes, ADOCIA, Boehringer Ingelheim Pharmaceuticals, Inc., Dexcom, Inc., Insulet Corporation, Lilly Diabetes, Novo Nordisk, Onduo LLC., Sanofi US. L. Fisher: Consultant; Self; Ascensia Diabetes Care, Lilly Diabetes, Speaker’s Bureau; Self; Dexcom, Inc. D. M. Hessler: Consultant; Self; Eli Lilly and Company. S. B. King: Consultant; Self; Eli Lilly and Company. U. Desai: Consultant; Self; Eli Lilly and Company. N. Kirson: Consultant; Self; Eli Lilly and Company. M. Perez-nieves: Employee; Self; Eli Lilly and Company.
Eli Lilly and Company
