Child-to-adult transition : a survey of current practices within the European Reference Network for Rare Neurological Diseases (ERN-RND)
(2024) In Neurological Sciences 45(3). p.1007-1016- 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... (More)
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.
(Less)
- author
- contributor
- de Koning, Tom J. LU
- author collaboration
- organization
- publishing date
- 2024-03
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- Child-to-adult transition, Clinical practice, European Reference Networks (ERNs), Rare neurological diseases, Transition care, Young healthcare management
- in
- Neurological Sciences
- volume
- 45
- issue
- 3
- pages
- 1007 - 1016
- publisher
- Springer
- external identifiers
-
- pmid:37853291
- scopus:85174415792
- ISSN
- 1590-1874
- DOI
- 10.1007/s10072-023-07101-3
- language
- English
- LU publication?
- yes
- additional info
- Publisher Copyright: © Fondazione Società Italiana di Neurologia 2023.
- id
- a2331696-604a-4561-8288-03a78d8e741e
- date added to LUP
- 2024-08-21 09:07:09
- date last changed
- 2024-09-04 10:42:36
@article{a2331696-604a-4561-8288-03a78d8e741e,
abstract = {{<p>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.</p>}},
author = {{Nanetti, Lorenzo and Kearney, Mary and Boesch, Sylvia and Stovickova, Lucie and Ortigoza-Escobar, Juan Darío and Macaya, Alfons and Gomez-Andres, David and Roze, Emmanuel and Molnar, Maria Judit and Wolf, Nicole I. and Darling, Alejandra and Vasco, Gessica and Bertini, Enrico and Indelicato, Elisabetta and Neubauer, David and Haack, Tobias B. and Sagi, Judit C. and Danti, Federica R. and Sival, Deborah and Zanni, Ginevra and Kolk, Anneli and Boespflug-Tanguy, Odile and Schols, Ludger and van de Warrenburg, Bart and Vidailhet, Marie and Willemsen, Michèl A. and Buizer, Annemieke I. and Orzes, Enrico and Ripp, Sophie and Reinhard, Carola and Moroni, Isabella and Mariotti, Caterina}},
issn = {{1590-1874}},
keywords = {{Child-to-adult transition; Clinical practice; European Reference Networks (ERNs); Rare neurological diseases; Transition care; Young healthcare management}},
language = {{eng}},
number = {{3}},
pages = {{1007--1016}},
publisher = {{Springer}},
series = {{Neurological Sciences}},
title = {{Child-to-adult transition : a survey of current practices within the European Reference Network for Rare Neurological Diseases (ERN-RND)}},
url = {{http://dx.doi.org/10.1007/s10072-023-07101-3}},
doi = {{10.1007/s10072-023-07101-3}},
volume = {{45}},
year = {{2024}},
}