Child-to-adult transition: a survey of current practices within the European Reference Network for Rare Neurological Diseases (ERN-RND).

Child-to-adult transition Clinical practice European Reference Networks (ERNs) Rare neurological diseases Transition care Young healthcare management

Journal

Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology
ISSN: 1590-3478
Titre abrégé: Neurol Sci
Pays: Italy
ID NLM: 100959175

Informations de publication

Date de publication:
19 Oct 2023
Historique:
received: 27 07 2023
accepted: 26 09 2023
medline: 19 10 2023
pubmed: 19 10 2023
entrez: 18 10 2023
Statut: aheadofprint

Résumé

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. 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). 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. 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. 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.

Sections du résumé

BACKGROUND 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 OBJECTIVE
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 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 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 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.

Identifiants

DOI: 10.1007/s10072-023-07101-3 PMID: 37853291
pubmed: 37853291
doi: 10.1007/s10072-023-07101-3
pii: 10.1007/s10072-023-07101-3
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Subventions

Organisme : European Union
ID : ERN-RND Framework Partnership Agreement 2022-23

Investigateurs

Michael Freilinger (M)
Benson Monika (B)
Ardissone Anna (A)
Iva Prihodova (I)
Klara Hruba Ebba Lohmann (KHE)
Samuel Gröschel (S)
Alexander Muenchau (A)
Kathrin Grundmann-Hauser (K)
Olaf Horst Rieß (OH)
Bernhard Landwehrmeyer (B)
Fran Borovečki (F)
Tom J de Koning (TJ)
Hadzsiev Kinga (H)
Juliane Spiegler (J)
Charlotte Haaxma (C)
Sandy Siegert (S)
Mario Fichera (M)
Tamara Martin (T)
Nuria Couto Lopez (NC)
Andrea Bevot (A)

Informations de copyright

© 2023. Fondazione Società Italiana di Neurologia.

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Auteurs

Lorenzo Nanetti (L)

Unit of Medical Genetics and Neurogenetics, Fondazione IRCCS Istituto Neurologico Carlo Besta, Via Celoria, 11, 20133, Milan, Italy.

Mary Kearney (M)

Patient Advocate at the European Reference Network Representing Individuals With Ataxia, and Neurology Research Fellow at the National Ataxia Centre, Tallaght University, Dublin, Ireland.

Sylvia Boesch (S)

Center for Rare Movement Disorders, Department of Neurology, Innsbruck, Austria.

Lucie Stovickova (L)

Centre of Hereditary Ataxias, Department of Pediatric Neurology, Second Faculty of Medicine and Motol University Hospital, Prague, Czech Republic.

Juan Darío Ortigoza-Escobar (JD)

Pediatric Neurology Department, Institut de Recerca Hospital Sant Joan de Déu Barcelona, Barcelona, Spain.

Alfons Macaya (A)

Pediatric Neurology, Vall d'Hebron Institut de Recerca, Hospital Universitari Vall d'Hebron, Vall d'Hebron Barcelona Hospital Campus, and Universitat Autònoma de Barcelona, Bellaterra, Spain.

David Gomez-Andres (D)

Pediatric Neurology, Vall d'Hebron Institut de Recerca, Hospital Universitari Vall d'Hebron, Vall d'Hebron Barcelona Hospital Campus, and Universitat Autònoma de Barcelona, Bellaterra, Spain.

Emmanuel Roze (E)

Sorbonne University, INSERM, CNRS, Paris Brain Institute, APHP Salpêtrière Hospital, Paris, France.

Maria-Judit Molnar (MJ)

Institute of Genomic Medicine and Rare Disorders, Semmelweis University, Budapest, Hungary.

Nicole I Wolf (NI)

Amsterdam Leukodystrophy Center, Department of Child Neurology, Emma's Children's Hospital, Vrije Universiteit Amsterdam, Amsterdam Neuroscience, Cellular & Molecular Mechanisms, Amsterdam, The Netherlands.

Alejandra Darling (A)

Pediatric Neurology Department, Institut de Recerca Hospital Sant Joan de Déu Barcelona, Barcelona, Spain.

Gessica Vasco (G)

Research Unit of Neurorehabilitation, IRCCS Bambino Gesù Children's Research Hospital, Rome, Italy.

Enrico Bertini (E)

Unit of Neuromuscular and Neurodegenerative Disease, IRCCS Bambino Gesù Children's Research Hospital, Rome, Italy.

Elisabetta Indelicato (E)

Center for Rare Movement Disorders, Department of Neurology, Innsbruck, Austria.

David Neubauer (D)

UMCL, Children's Hospital Ljubljana and University of Ljubljana, Ljubljana, Slovenia.

Tobias B Haack (TB)

Institute of Medical Genetics and Applied Genomics University of Tübingen, Tübingen, Germany.

Judit C Sagi (JC)

Institute of Genomic Medicine and Rare Disorders, Semmelweis University, Budapest, Hungary.
Department of Paediatrics, Semmelweis University, Dept. of Genetics, Cell- and Immunobiology, Semmelweis University, Budapest, Hungary.

Federica R Danti (FR)

Department of Pediatric Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.

Deborah Sival (D)

Department of Paediatric Neurology, Beatrix Children's Hospital, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.

Ginevra Zanni (G)

Unit of Neuromuscular and Neurodegenerative Disease, IRCCS Bambino Gesù Children's Research Hospital, Rome, Italy.

Anneli Kolk (A)

Tartu University Hospital Children's Clinic, Department of Pediatrics and Neurology, Tartu, Estonia.

Odile Boespflug-Tanguy (O)

APHP, Université Paris Cité, INSERM UMR1141, Hôpital Robert Debré, Service de Neuropédiatrie, Centre de Reference LEUKOFRANCE, Paris, France.

Ludger Schols (L)

Department of Neurology and Hertie Institute for Clinical Brain Research, University of Tübingen, and German Center for Neurodegenerative Diseases, Tübingen, Germany.

Bart van de Warrenburg (B)

Donders Institute for Brain, Cognition, and Behaviour, Radboud University Medical Center, Nijmegen, the Netherlands.

Marie Vidailhet (M)

Sorbonne University, INSERM, CNRS, Paris Brain Institute, APHP Salpêtrière Hospital, Paris, France.

Michèl A Willemsen (MA)

Donders Institute for Brain, Cognition, and Behaviour, Radboud University Medical Center, Nijmegen, the Netherlands.

Annemieke I Buizer (AI)

Department of Rehabilitation Medicine, Emma Children's Hospital, Amsterdam, Vrije Universiteit, Amsterdam, Amsterdam Movement Science, Rehabilitation and Development, Amsterdam, The Netherlands.

Enrico Orzes (E)

Osservatorio Malattie Rare - Rarelab S.R.L., Rome, Italy.

Sophie Ripp (S)

Centre for Rare Diseases and Institute of Medical Genetics and Applied Genomics, University Hospital Tübingen, Tübingen, Germany.

Carola Reinhard (C)

Centre for Rare Diseases and Institute of Medical Genetics and Applied Genomics, University Hospital Tübingen, Tübingen, Germany.

Isabella Moroni (I)

Department of Pediatric Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.

Caterina Mariotti (C)

Unit of Medical Genetics and Neurogenetics, Fondazione IRCCS Istituto Neurologico Carlo Besta, Via Celoria, 11, 20133, Milan, Italy. caterina.mariotti@istituto-besta.it.
ORCID: 0000-0003-2405-3564

Classifications MeSH