Exploring transition in epilepsy within ERN EpiCARE centers: Insights from a survey analysis

The transition from pediatric to adult healthcare is a critical stage for young individuals with chronic neurological disorders, particularly those with rare and complex epilepsies. This paper aims to explore the practice of transition by healthcare providers within EpiCARE. Through a comprehensive questionnaire, developed in collaboration with European Patient Advocacy Groups, this study investigates the current management of transition and identifies key barriers hindering stakeholders' needs. The questionnaire was completed by 60 EpiCARE members. Half of the respondents reported existing written transition procedures in their centers. Findings reveal significant hurdles in dedicated transition services, with nearly half of the respondents indicating their centers lack such pipelines. A critical gap exists in multidisciplinary team involvement, with inconsistent participation from key specialists like psychiatrists and social workers. The transition process typically begins at 16-18 years according to 70% of respondents; though 61% believe it should occur prior to the age of 17, highlighting the need for early planning to prevent gaps in care continuity. Furthermore, routinely used informal communication methods for clinical coordination underscore the need for standardized protocols and structured processes. This survey highlights the urgent need for tailored transition protocols that address the unique challenges of managing patients with rare and complex epilepsies, emphasizing the importance of integrating psychosocial support, optimizing comorbidity management, and ensuring coordination by experts in transitional care for these conditions. Fostering collaboration among healthcare providers, patients, and families is essential for refining transition strategies and ensuring comprehensive care for individuals with rare and complex epilepsies. Further initiatives are required to bridge the gaps between pediatric and adult healthcare systems, enhancing the overall quality of life for this vulnerable population. PLAIN LANGUAGE SUMMARY: Moving from child to adult healthcare is a key step for young people with rare and complex epilepsies. This study surveyed EpiCARE centers to understand how transitions are managed. Only half have written procedures, and many lack dedicated services or full specialist teams. Most start the transition at ages 16-18, but many believe it should begin earlier. Communication is often informal, without clear protocols. The results highlight the urgent need for structured, personalized transition plans that include psychological support and expert coordination to ensure continuous, high-quality care into adulthood.