European journal of neurology · 2026
Transition From Child to Adult Care in Paediatric Neurological Disorders in Europe-A Joint EAN-EPNS Survey of Current Practices for Healthcare Providers.
СтатьяНазвание и аннотация: Перевод пока не подготовлен
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История · было → стало
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Craiu Dana, Cazacu Cristina, Papadopoulou Maria T, Lim Ming, Rostasy Kevin, Jansen Anna C, Haataja Leena M, Kopyta Ilona Anna, Claeys Kristl G, Rubboli Guido, Ferrazzoli Chiara, McGinty Ronan, Cilio Maria Roberta, Lolich Maria, Zafeiriou Dimitrios, Bahi-Buisson Nadia, Moro Elena, Fink Gereon R, Berger Thomas
Аннотация
BACKGROUND: Transition from paediatric to adult care is essential for young people with paediatric-onset neurological disorders, yet remains inconsistently structured across Europe. This study aimed to characterise current transition practices, identify key barriers and explore perceived priorities for improving transition care.
METHODS: A cross-sectional web-based survey, developed by the European Paediatric Neurology Society/European Academy of Neurology Task Force on Transition from Childhood to Adulthood, was distributed to members of both societies between February and April 2025. The 22-item questionnaire assessed institutional characteristics, transition practices, perceived barriers and improvement measures. Responses were analysed descriptively and compared according to the reported presence of an institutional transition programme.
RESULTS: Overall, 328 responses were analysed. A transition programme was reported to be available in the country of practice by 123 respondents (37.5%). Respondents from institutions with transition programmes reported earlier transition initiation (median 16 vs. 17 years) and more frequent structured practices, including joint paediatric-adult consultations (73.7% vs. 27.1%). The highest-rated barriers were lack of multidisciplinary teams, limited adult neurology capacity and difficulty accessing adult neurology services. Key improvement priorities included joint consultations, national recommendations, specialised care networks and dedicated transition coordination. Satisfaction with current transition practice was low; only 7.9% of respondents reported complete satisfaction.
CONCLUSIONS: Transition of care for paediatric-onset neurological disorders in Europe remains heterogeneous. Although core elements of effective transition are widely recognised, implementation is limited by organisational and system-level barriers. Coordinated strategies are needed to support structured, patient-centred transition pathways.
METHODS: A cross-sectional web-based survey, developed by the European Paediatric Neurology Society/European Academy of Neurology Task Force on Transition from Childhood to Adulthood, was distributed to members of both societies between February and April 2025. The 22-item questionnaire assessed institutional characteristics, transition practices, perceived barriers and improvement measures. Responses were analysed descriptively and compared according to the reported presence of an institutional transition programme.
RESULTS: Overall, 328 responses were analysed. A transition programme was reported to be available in the country of practice by 123 respondents (37.5%). Respondents from institutions with transition programmes reported earlier transition initiation (median 16 vs. 17 years) and more frequent structured practices, including joint paediatric-adult consultations (73.7% vs. 27.1%). The highest-rated barriers were lack of multidisciplinary teams, limited adult neurology capacity and difficulty accessing adult neurology services. Key improvement priorities included joint consultations, national recommendations, specialised care networks and dedicated transition coordination. Satisfaction with current transition practice was low; only 7.9% of respondents reported complete satisfaction.
CONCLUSIONS: Transition of care for paediatric-onset neurological disorders in Europe remains heterogeneous. Although core elements of effective transition are widely recognised, implementation is limited by organisational and system-level barriers. Coordinated strategies are needed to support structured, patient-centred transition pathways.