Abstract
Introduction: Type 1 diabetes is burdensome, requiring complex daily management and making people more prone to emotional distress. To better detect diabetes-related distress (DD) and identify at-risk patients, we aimed to provide an in-depth characterization of DD in people with type 1 diabetes.Research design and methods: We included adults with type 1 diabetes from the Suivi en France des personnes avec un Diabète de Type 1 cohort who filled in the Problem Areas in Diabetes questionnaire (PAID ≥40 indicates high DD). Age and sex-adjusted multivariable logistic regression models analyzed individual characteristics, clinical indicators, diabetes-related complications and psychological factors. We further analyzed DD according to six data-driven subdimensions: emotional distress, fear of complications, social distress, eating distress, management distress, and diabetes burnout.Results: In total, 1220 participants (50.6% female, age 42 years (SD 13.9), diabetes duration 24.7 years (13.6)) had a total mean PAID score of 39.6 (21.7) and 592 (48.5%) reported high DD. Leading subdimensions of DD included fear of complications (50.1 (24.4)) and diabetes burnout (45.9 (24.5)). Females, younger age, social vulnerability, smoking, and the presence of retinopathy were positively associated with high DD (p<0.05). We observed similar DD levels across HbA1c levels and treatment modalities, including automated insulin delivery and continuous glucose monitoring use. Several psychological factors, such as anxiety/depression, poor sleep quality, and treatment burden, were strongly associated with DD (p<0.001).Conclusions: We provide a holistic clinical phenotyping approach that enables the identification of determinants and prevalence of DD, overall and according to key DD subdimensions, in a large and diverse population. Our results underscore the importance of developing DD-targeted prevention and intervention strategies focused specifically on high-risk groups and the most impactful distress subdimensions to reduce the impact of type 1 diabetes burden.Trial registration number: NCT04657783.