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

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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.

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Data Availability

Data supporting these findings are available in the supplementary files.

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Acknowledgements

ERN-RND Working Group for Management of Transition

Names

Email

Michael Freilinger

michael.freilinger@meduniwien.ac.at

Benson Monika

monika.benson@dystonia-europe.org

Ardissone Anna

anna.ardissone@istituto-besta.it

Iva Prihodova

iva.prihodova@lf1.cuni.cz

Klara Hruba

Klara.Hruba@vfn.cz

Ebba Lohmann

Ebba.Lohmann@med.uni-tuebingen.de

Samuel Gröschel

Samuel.Groeschel@med.uni-tuebingen.de

Alexander Muenchau

alexander.muenchau@neuro.uni-luebeck.de

Kathrin Grundmann-Hauser

Kathrin.Grundmann@med.uni-tuebingen.de

Olaf Horst Rieß

Olaf.Riess@med.uni-tuebingen.de > 

Bernhard Landwehrmeyer

bernhard.landwehrmeyer@uni-ulm.de

Fran Borovečki

fran.borovecki@mef.hr

Tom J de Koning

t.j.de.koning@umcg.nl

Hadzsiev Kinga

hadzsiev.kinga@pte.hu

Juliane.Spiegler

Juliane.Spiegler@uksh.de

Charlotte.Haaxma

Charlotte.Haaxma@radboudumc.nl

Sandy Siegert

sandy.siegert@meduniwien.ac.at

Mario Fichera

Mario.fichera@istituto-besta.it

Tamara Martin

Tamara.Martin@med.uni-tuebingen.de > 

Nuria Couto Lopez

nlopez@sjdhospitalbarcelona.org

Andrea Bevot

Andrea.Bevot@med.uni-tuebingen.de

Funding

This study has been supported by ERN-RND, which is partly co-funded by the European Union within the framework of the ERN-RND ERN-2022—Framework Partnership Agreement 2022–23. We also received partial support by the Italian Ministry of Health (RRC).

Author information

Authors and Affiliations

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

    Lorenzo Nanetti & Caterina Mariotti

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

    Mary Kearney

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

    Sylvia Boesch & Elisabetta Indelicato

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

    Lucie Stovickova

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

    Juan Darío Ortigoza-Escobar & Alejandra Darling

  6. 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

    Alfons Macaya & David Gomez-Andres

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

    Emmanuel Roze & Marie Vidailhet

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

    Maria-Judit Molnar & Judit C. Sagi

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

    Nicole I. Wolf

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

    Gessica Vasco

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

    Enrico Bertini & Ginevra Zanni

  12. UMCL, Children’s Hospital Ljubljana and University of Ljubljana, Ljubljana, Slovenia

    David Neubauer

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

    Tobias B. Haack

  14. Department of Paediatrics, Semmelweis University, Dept. of Genetics, Cell- and Immunobiology, Semmelweis University, Budapest, Hungary

    Judit C. Sagi

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

    Federica R. Danti & Isabella Moroni

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

    Deborah Sival

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

    Anneli Kolk

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

    Odile Boespflug-Tanguy

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

    Ludger Schols

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

    Bart van de Warrenburg & Michèl A. Willemsen

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

    Annemieke I. Buizer

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

    Enrico Orzes

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

    Sophie Ripp & Carola Reinhard

Authors
  1. Lorenzo Nanetti
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  2. Mary Kearney
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  3. Sylvia Boesch
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  4. Lucie Stovickova
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  5. Juan Darío Ortigoza-Escobar
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  6. Alfons Macaya
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  7. David Gomez-Andres
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  8. Emmanuel Roze
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  9. Maria-Judit Molnar
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  10. Nicole I. Wolf
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  11. Alejandra Darling
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  12. Gessica Vasco
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  13. Enrico Bertini
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  14. Elisabetta Indelicato
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  15. David Neubauer
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  16. Tobias B. Haack
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  17. Judit C. Sagi
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  18. Federica R. Danti
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  19. Deborah Sival
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  20. Ginevra Zanni
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  21. Anneli Kolk
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  22. Odile Boespflug-Tanguy
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  23. Ludger Schols
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  24. Bart van de Warrenburg
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  25. Marie Vidailhet
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  26. Michèl A. Willemsen
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  27. Annemieke I. Buizer
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  28. Enrico Orzes
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  29. Sophie Ripp
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  30. Carola Reinhard
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  31. Isabella Moroni
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  32. Caterina Mariotti
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Consortia

on Behalf of ERN-RND Working Group for Management of Transition

  • Michael Freilinger
  • , Benson Monika
  • , Ardissone Anna
  • , Iva Prihodova
  • , Klara Hruba Ebba Lohmann
  • , Samuel Gröschel
  • , Alexander Muenchau
  • , Kathrin Grundmann-Hauser
  • , Olaf Horst Rieß
  • , Bernhard Landwehrmeyer
  • , Fran Borovečki
  • , Tom J. de Koning
  • , Hadzsiev Kinga
  • , Juliane Spiegler
  • , Charlotte Haaxma
  • , Sandy Siegert
  • , Mario Fichera
  • , Tamara Martin
  • , Nuria Couto Lopez
  •  & Andrea Bevot

Contributions

All authors developed the research question, were involved in data acquisition, critically reviewed the manuscript, and provided final approval. Lorenzo Nanetti, Mary Kearney, and Caterina Mariotti drafted the manuscript and created tables and the figures.

Corresponding author

Correspondence to Caterina Mariotti.

Ethics declarations

Ethical approval

No ethical approval was necessary for the conduction of the study.

Conflict of interest

The authors report no conflicts of interest related to this article.

The authors are members of the European Reference Network for Rare Neurological Disorders (ERN-RND), Project ID No. 739510.

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Nanetti, L., Kearney, M., Boesch, S. et al. Child-to-adult transition: a survey of current practices within the European Reference Network for Rare Neurological Diseases (ERN-RND). Neurol Sci 45, 1007–1016 (2024). https://doi.org/10.1007/s10072-023-07101-3

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