Erschienen in:
19.10.2023 | Original Article
Child-to-adult transition: a survey of current practices within the European Reference Network for Rare Neurological Diseases (ERN-RND)
verfasst von:
Lorenzo Nanetti, Mary Kearney, Sylvia Boesch, Lucie Stovickova, Juan Darío Ortigoza-Escobar, Alfons Macaya, David Gomez-Andres, Emmanuel Roze, Maria-Judit Molnar, Nicole I. Wolf, Alejandra Darling, Gessica Vasco, Enrico Bertini, Elisabetta Indelicato, David Neubauer, Tobias B. Haack, Judit C. Sagi, Federica R. Danti, Deborah Sival, Ginevra Zanni, Anneli Kolk, Odile Boespflug-Tanguy, Ludger Schols, Bart van de Warrenburg, Marie Vidailhet, Michèl A. Willemsen, Annemieke I. Buizer, Enrico Orzes, Sophie Ripp, Carola Reinhard, Isabella Moroni, Caterina Mariotti, on Behalf of ERN-RND Working Group for Management of Transition
Erschienen in:
Neurological Sciences
|
Ausgabe 3/2024
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Abstract
Background
Transition from child-centered to adult-centered healthcare is a gradual process that addresses the medical, psychological, and educational needs of young people in the management of their autonomy in making decisions about their health and their future clinical assistance. This transfer is challenging across all chronic diseases but can be particularly arduous in rare neurological conditions.
Aim
To describe the current practice on the transition process for young patients in centers participating in the European Reference Network for Rare Neurological Diseases (ERN-RND).
Methods
Members of the ERN-RND working group developed a questionnaire considering child-to-adult transition issues and procedures in current clinical practice. The questionnaire included 20 questions and was sent to members of the health care providers (HCPs) participating in the network.
Results
Twenty ERN-RND members (75% adult neurologists; 25% pediatricians; 5% nurses or study coordinators) responded to the survey, representing 10 European countries. Transition usually occurs between 16 and 18 years of age, but 55% of pediatric HCPs continue to care for their patients until they reach 40 years of age or older. In 5/20 ERN-RND centers, a standardized procedure managing transition is currently adopted, whereas in the remaining centers, the transition from youth to adult service is usually assisted by pediatricians as part of their clinical practice.
Conclusions
This survey demonstrated significant variations in clinical practice between different centers within the ERN-RND network. It provided valuable data on existing transition programs and highlighted key challenges in managing transitions for patients with rare neurological disorders.