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

Abstract

Introduction Young adults with diabetes face many challenges during emerging adulthood. Our study aimed to identify the 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.