Mapping transition of care for rare endocrine conditions: findings from a cross-sectional survey by the Endo-ERN ToC Working Group

BACKGROUND: Adolescents and young adults with rare endocrine conditions face significant challenges during the transition from paediatric to adult healthcare systems. Despite increasing awareness, unstructured transitional care is frequent across Europe and is linked to adverse health outcomes, reduced adherence, and loss to follow-up.

OBJECTIVE: This study aimed to map existing models of care and identify key barriers and needs that could inform the development of standardised tools and recommendations to support improved transition processes within the European Reference Network on Rare Endocrine Conditions (Endo-ERN) framework.

METHODS: A cross-sectional, web-based survey was developed and disseminated by the 'Transition of Care' Working Group. The questionnaire comprised 31 items across 10 thematic domains and targeted both Endo-ERN and non-affiliated centres. Responses were collected between January and March 2025. Statistical and qualitative thematic analyses were performed.

RESULTS: A total of 111 responses were analysed from 80 centres across 21 European countries. Findings revealed marked heterogeneity in transition models, use of protocols, and availability of psychological support. Only about half of the centres reported shared paediatric-adult visits, and over one-third lacked follow-up strategies. E-health tools were underutilised despite expressed interest. A significant proportion of participants reported limited access to transition coordinators and heterogeneous privacy and data protection practices, highlighting concerns regarding General Data Protection Regulation (GDPR) compliance.

CONCLUSION: The study underscores the need for standardised, patient-centred models of transitional care for rare endocrine conditions across Europe. Findings will inform the creation of harmonised tools and protocols to guide multidisciplinary collaboration and improve long-term outcomes.

PLAIN LANGUAGE SUMMARY: Young people with rare endocrine conditions often struggle when moving from child to adult healthcare. We surveyed centres across Europe and found large differences in how this process is organised. Our findings highlight the need for clearer plans, better coordination, and tools to support a safer and more consistent transition for all patients.