Transition between pediatric and adult diabetes healthcare services: an online global survey of experiences and perceptions of young people with diabetes and their carers

Introduction: Young adults with diabetes face many challenges during emerging adulthood. Our study aimed to identify experiences and perceptions of people with diabetes (PwD) (aged 14-25 years) and their carers, around transition planning, and the actual transfer from pediatric to adult diabetes healthcare services. 

Methods: Data were collected via an online global survey (seven language options), broadly advertised by the scientific societies ISPAD, EASD, patient advocates, team members and partners, via newsletters, websites, e-mails, and social media. 

Results: There were 146 respondents from 29 countries. Of these, 90 (61.6%) were PwD age 18.5 (±3.6 years), diagnosed at 9.0 (±4.4 years), and 56 (38.3%) carers. Respondents receiving care in pediatric units (vs. adult) (58.2%) had higher care satisfaction and more frequent appointments (p < 0.05); 65.1% of respondents reported a fixed transfer age (≥18 years). Overall, 45.2% detailed transfer-related concerns; 44.3% felt their psychosocial needs were adequately addressed, 24.7% felt unprepared for areas of self-management. Combined pediatric and adult diabetes clinics (56.2%), and psychologist support (50.7%) were most desired. 

Conclusion: Findings highlight the urgent need to improve the transition process. A joint ISPAD, EASD, and ADA consensus report is in preparation.