Measuring Diabetes Distress in Emerging Adulthood

Abstract

Significance of Problem: Emerging adults (ages 18-30) with type 1 diabetes (T1D) are a specific group that experiences worse glycemic control, more frequent severe hypoglycemia and more frequent diabetic ketoacidosis (DKA) than any other age group. The multiple transitions and stressors associated with the developmental stage of emerging adulthood can magnify and exacerbate the diabetes specific emotional burden of living with T1D, resulting in increased diabetes distress (DD). However, there is no measure of DD specific to the developmental stage of emerging adulthood. Purpose: The purpose of this program of research is to explicate the need for a developmental stage-specific measure of DD, as well as to develop, refine and psychometrically validate a new measure of DD in emerging adults. Method: This multi-phase study employed methods grounded in both item response theory (Rasch analysis) and classical test theory to reduce, refine and validate a new measure of DD in emerging adulthood, entitled the Problem Areas in Diabetes-Emerging Adult version (PAID-EA). In phase 1, data were collected from emerging adults with T1D using a cross-sectional online survey strategy. Rasch methodology was used to reduce and refine the PAID-EA. In phase 2, an additional cross-sectional online survey was conducted using the refined PAID-EA. Classical test theory-based approaches were employed to examine the psychometric properties of the refined measure. Finally, the relationships between scores on the PAID-EA and related constructs and clinical variables were explored. Conclusions: Collectively, this work advances the science by providing insight into how the challenges of emerging adulthood impact life with T1D during this developmental stage and providing a new measure to accurately and validly capture this experience for both clinical and research purposes.