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Child-to-adult tran...
Child-to-adult transition : a survey of current practices within the European Reference Network for Rare Neurological Diseases (ERN-RND)
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- Nanetti, Lorenzo (författare)
- Carlo Besta Neurological Institute, IRCCS
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- Kearney, Mary (författare)
- Tallaght University Hospital
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- Boesch, Sylvia (författare)
- Medical University of Innsbruck
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- Stovickova, Lucie (författare)
- University Hospital Motol
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- Ortigoza-Escobar, Juan Darío (författare)
- Hospital Sant Joan de Déu Barcelona
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- Macaya, Alfons (författare)
- Vall d'Hebron University Hospital
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- Gomez-Andres, David (författare)
- Vall d'Hebron University Hospital
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- Roze, Emmanuel (författare)
- Pitié-Salpêtrière University Hospital
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- Molnar, Maria Judit (författare)
- Semmelweis University
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- Wolf, Nicole I. (författare)
- Vrije Universiteit Amsterdam
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- Darling, Alejandra (författare)
- Hospital Sant Joan de Déu Barcelona
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- Vasco, Gessica (författare)
- Bambino Gesù Children’s Hospital
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- Bertini, Enrico (författare)
- Bambino Gesù Children’s Hospital
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- Indelicato, Elisabetta (författare)
- Medical University of Innsbruck
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- Neubauer, David (författare)
- University of Ljubljana
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- Haack, Tobias B. (författare)
- University of Tübingen
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- Sagi, Judit C. (författare)
- Semmelweis University
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- Danti, Federica R. (författare)
- Carlo Besta Neurological Institute, IRCCS
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- Sival, Deborah (författare)
- Beatrix Children's Hospital
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- Zanni, Ginevra (författare)
- Bambino Gesù Children’s Hospital
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- Kolk, Anneli (författare)
- Tartu University Hospital
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- Boespflug-Tanguy, Odile (författare)
- Hôpital universitaire Robert-Debré
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- Schols, Ludger (författare)
- University of Tübingen
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- van de Warrenburg, Bart (författare)
- Radboud University Medical Center,Radboud University Nijmegen
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- Vidailhet, Marie (författare)
- Pitié-Salpêtrière University Hospital
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- Willemsen, Michèl A. (författare)
- Radboud University Medical Center,Radboud University Nijmegen
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- Buizer, Annemieke I. (författare)
- Vrije Universiteit Amsterdam
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- Orzes, Enrico (författare)
- Osservatorio Malattie Rare
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- Ripp, Sophie (författare)
- University Hospital of Tubingen
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- Reinhard, Carola (författare)
- University Hospital of Tubingen
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- Moroni, Isabella (författare)
- Carlo Besta Neurological Institute, IRCCS
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- Mariotti, Caterina (författare)
- Carlo Besta Neurological Institute, IRCCS
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- de Koning, Tom J. (creator_code:cre_t)
- Lund University,Lunds universitet,Pediatrik, Lund,Sektion V,Institutionen för kliniska vetenskaper, Lund,Medicinska fakulteten,Paediatrics (Lund),Section V,Department of Clinical Sciences, Lund,Faculty of Medicine
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(creator_code:org_t)
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- 2024
- 2024
- Engelska.
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Ingår i: Neurological Sciences. - 1590-1874. ; 45:3, s. 1007-1016
- Relaterad länk:
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http://dx.doi.org/10...
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https://lup.lub.lu.s...
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https://doi.org/10.1...
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Abstract
Ämnesord
Stäng
- 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.
Ämnesord
- MEDICIN OCH HÄLSOVETENSKAP -- Medicinska och farmaceutiska grundvetenskaper -- Neurovetenskaper (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Basic Medicine -- Neurosciences (hsv//eng)
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Pediatrik (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Pediatrics (hsv//eng)
Nyckelord
- Child-to-adult transition
- Clinical practice
- European Reference Networks (ERNs)
- Rare neurological diseases
- Transition care
- Young healthcare management
Publikations- och innehållstyp
- art (ämneskategori)
- ref (ämneskategori)
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Till lärosätets databas
- Av författaren/redakt...
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Nanetti, Lorenzo
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Kearney, Mary
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Boesch, Sylvia
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Stovickova, Luci ...
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Ortigoza-Escobar ...
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Macaya, Alfons
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visa fler...
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Gomez-Andres, Da ...
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Roze, Emmanuel
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Molnar, Maria Ju ...
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Wolf, Nicole I.
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Darling, Alejand ...
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Vasco, Gessica
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Bertini, Enrico
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Indelicato, Elis ...
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Neubauer, David
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Haack, Tobias B.
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Sagi, Judit C.
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Danti, Federica ...
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Sival, Deborah
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Zanni, Ginevra
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Kolk, Anneli
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Boespflug-Tanguy ...
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Schols, Ludger
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van de Warrenbur ...
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Vidailhet, Marie
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Willemsen, Michè ...
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Buizer, Annemiek ...
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Orzes, Enrico
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Ripp, Sophie
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Reinhard, Carola
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Moroni, Isabella
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Mariotti, Cateri ...
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de Koning, Tom J ...
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- Om ämnet
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- MEDICIN OCH HÄLSOVETENSKAP
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MEDICIN OCH HÄLS ...
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och Medicinska och f ...
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och Neurovetenskaper
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- MEDICIN OCH HÄLSOVETENSKAP
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MEDICIN OCH HÄLS ...
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och Klinisk medicin
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och Pediatrik
- Artiklar i publikationen
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Neurological Sci ...
- Av lärosätet
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Lunds universitet