A novel approach to understanding and assessing the emotional side of type 1 diabetes: The Type 1‐Diabetes Distress Assessment System

Abstract Aims To describe the development of a novel, conceptually sound instrument with contemporary content for assessing diabetes distress (DD) among adults with type 1 diabetes. Methods Qualitative interviews with 15 adults and 7 clinicians were used to develop Core (intensity of DD emotional burden) and primary Source (key DD contributors) items. These were administered to a national sample recruited from the TCOYD Research Registry, T1D Exchange and our previous studies. Exploratory and confirmatory factor analyses were undertaken, along with reliability and construct validity studies, and cut‐point analyses to determine elevated DD. Results Analyses based on 650 respondents yielded an 8‐item Core DD scale ( α = 0.95) and 10 2‐ or 3‐item DD Source Scales ( α range = 0.53–0.88): Financial Worries, Interpersonal Challenges, Management Difficulties, Shame, Hypoglycemia Concerns, Healthcare Quality, Lack of Diabetes Resources, Technology Challenges, Burden to Others and Worries about Complications. Core and Source scores were significantly associated with criterion variables: Higher DD scores were significantly linked with higher HbA 1C , more frequent episodes of severe hypoglycaemia, missed boluses, and poorer quality of life ( p > 0.001). A ≥2.0 scale cut‐point to define elevated DD is suggested. Conclusions The new T1‐Diabetes Distress Assessment System demonstrated good reliability and validity, and with measures of both Core emotional burden and Sources of DD, it provides a contemporary, flexible and practical approach to assessing DD that can be used seamlessly to inform intervention for clinicians and researchers.