Understanding Diabetes Distress Across Adulthood in Type 1 Diabetes: A User-Centered Design Study.

AIMS: Diabetes distress is common among adults with Type 1 diabetes (T1D) and is associated with poorer psychological and medical outcomes. While diabetes distress occurs across the lifespan, less is known about how its sources differ by age and how patient input can inform intervention development. METHODS: Using a user-centred design (UCD) approach, we conducted six virtual group sessions with adults with T1D to inform the development of a cognitive-behavioural intervention targeting diabetes distress. Participants included young adults aged 18-34 recruited from an academic medical centre and adults aged 35-64 recruited from a national patient advisory council. Sessions were audio-recorded, transcribed and analysed using a modified inductive qualitative approach. RESULTS: Nineteen adults with T1D participated. Across age groups, participants identified shared domains of diabetes distress, including competing daily priorities, financial and insurance-related barriers, interpersonal relationships and healthcare system challenges. However, important age-related differences emerged. Young adults emphasized immediate disruptions to daily life, identity, competing priorities and technology-related burden, whereas adults aged 35-64 highlighted cumulative fatigue, fear of complications, caregiving responsibilities and long-term concerns related to healthcare access and financial sustainability. CONCLUSIONS: Diabetes distress is a pervasive but age-contextualized experience among adults with T1D. Incorporating stakeholder perspectives revealed both shared and age-specific drivers of distress, supporting the need for life stage-responsive psychosocial interventions to address diabetes distress in adults with T1D.