Diabetes-related distress and perspectives on disability registration in pancreatic endocrine dysfunction: a multicenter web-based survey in Korea

Purpose: This study aimed to assess diabetes-related distress and perspectives on disability registration among people with type 1 diabetes and other forms of pancreatic endocrine dysfunction (PED) and caregivers of pediatric patients in Korea.Methods: A multicenter web-based survey included individuals with type 1 diabetes or those who had undergone pancreatectomy or pancreas transplantation; caregivers responded on behalf of pediatric participants when applicable. Diabetes-related distress was assessed using the Diabetes Distress Scale (DDS), with a score ≥3 indicating elevated diabetes-related distress. Multivariable regression analyses were performed to identify factors associated with distress and perspectives on disability registration.Results: A total of 852 respondents (median patient age, 19.0 years; 49.2% aged ≤18 years; 98.5% with type 1 diabetes) were included. The median DDS score was 3.2 (interquartile range, 2.7–3.7), and 64.8% had a DDS score ≥3. Questionnaires concerning adult participants more frequently had DDS scores ≥3 than those concerning pediatric participants (69.8% vs. 59.6%, P=0.002). Emotional burden was the predominant domain (88.5% scoring ≥3). Overall, 97.1% of participants supported disability registration. Older age (B=–0.013), shorter duration of diabetes (B=–0.012), and diabetes-related complications (B=0.395) were associated with higher distress. Higher DDS scores were associated with support for disability registration (odds ratio, 2.89; 95% confidence interval, 1.64–5.11).Conclusion: Diabetes-related distress is common in people with type 1 diabetes and other forms of PED, with emotional burden being particularly prominent. Higher DDS scores were associated with more favorable views of disability registration, suggesting that perceived psychosocial burden may influence perspectives on formal recognition and support.