Improving paediatric movement disorders care: Insights on rating scales utilization and clinical practice

Aim: This exploratory study evaluates rating scale usage by experts from the European Reference Network for Rare Neurological Diseases (ERN-RND) for paediatric MD, considering factors like diagnosis, intellectual disability, age, and transition to adult care. The aim is to propose a preliminary fram...

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Autores: Amato ME, Darling A, Stovickova L, Attard S, Eggink H, Engelen M, Freilinger M, Grosso S, Hadzsiev K, Moroni I, Nardocci N, Neubauer D, Nicita F, Pagliano E, Siegert S, Soler D, van de Pol LA, Vasco G, Vidailhet M, Willemsen MA, Zibordi F, Zorzi G, Zumrova A, Reinhard C, Sevin C, Wolf N, Rodriguez-Blazquez C, Sival DA, Ortigoza-Escobar JD
Formato: artículo
Estado:Versión publicada
Fecha de publicación:2024
País:España
Recursos:Fundació Sant Joan de Déu
Repositorio:r-FSJD. Repositorio Institucional de Producción Científica de la Fundació Sant Joan de Déu
OAI Identifier:oai:fsjd.fundanetsuite.com:p26520
Acesso em linha:https://fsjd.fundanetsuite.com/Publicaciones/ProdCientif/PublicacionFrw.aspx?id=26520
Access Level:acceso abierto
Palavra-chave:Movement disorders
Paediatrics
Rating scales
Ataxia
Dystonia
Myoclonus
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spelling Improving paediatric movement disorders care: Insights on rating scales utilization and clinical practiceAmato MEDarling AStovickova LAttard SEggink HEngelen MFreilinger MGrosso SHadzsiev KMoroni INardocci NNeubauer DNicita FPagliano ESiegert SSoler Dvan de Pol LAVasco GVidailhet MWillemsen MAZibordi FZorzi GZumrova AReinhard CSevin CWolf NRodriguez-Blazquez CSival DAOrtigoza-Escobar JDMovement disordersPaediatricsRating scalesAtaxiaDystoniaMyoclonusAim: This exploratory study evaluates rating scale usage by experts from the European Reference Network for Rare Neurological Diseases (ERN-RND) for paediatric MD, considering factors like diagnosis, intellectual disability, age, and transition to adult care. The aim is to propose a preliminary framework for consistent application. Methods: A multicentre survey among 25 ERN-RND experts from 10 European countries examined rating scale usage in paediatric MD, categorizing MD into acute, non-progressive, and neurodegenerative types. Factors influencing scale choice and the transition to adult care practices were analysed. A comprehensive literature search was conducted to identify the earliest age of application of these scales in paediatric patients. Results: The study identifies various rating scales and establishes their usage frequencies for different MDs. Experts highlighted the need for standardized scales and proposed preliminary evaluation strategies based on clinical contexts. Challenges in applying scales to young, non-cooperative patients were acknowledged. Interpretation: The study recommends developing standardized rating scales for paediatric MDs to improve evaluations and data collection. It suggests potential scales for specific clinical scenarios to better evaluate disease progression. Comprehensive, patient-centred care remains crucial during the transition to adult care, despite the identified challenges. This exploratory approach aims to enhance patient outcomes and care.ELSEVIER SCI LTD2024info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionhttps://fsjd.fundanetsuite.com/Publicaciones/ProdCientif/PublicacionFrw.aspx?id=26520EUROPEAN JOURNAL OF PAEDIATRIC NEUROLOGYISSN: 10903798ISSNe: 15322130reponame:r-FSJD. Repositorio Institucional de Producción Científica de la Fundació Sant Joan de Déuinstname:Fundació Sant Joan de DéuInglésinfo:eu-repo/semantics/openAccessoai:fsjd.fundanetsuite.com:p265202026-05-27T12:37:41Z
dc.title.none.fl_str_mv Improving paediatric movement disorders care: Insights on rating scales utilization and clinical practice
title Improving paediatric movement disorders care: Insights on rating scales utilization and clinical practice
spellingShingle Improving paediatric movement disorders care: Insights on rating scales utilization and clinical practice
Amato ME
Movement disorders
Paediatrics
Rating scales
Ataxia
Dystonia
Myoclonus
title_short Improving paediatric movement disorders care: Insights on rating scales utilization and clinical practice
title_full Improving paediatric movement disorders care: Insights on rating scales utilization and clinical practice
title_fullStr Improving paediatric movement disorders care: Insights on rating scales utilization and clinical practice
title_full_unstemmed Improving paediatric movement disorders care: Insights on rating scales utilization and clinical practice
title_sort Improving paediatric movement disorders care: Insights on rating scales utilization and clinical practice
dc.creator.none.fl_str_mv Amato ME
Darling A
Stovickova L
Attard S
Eggink H
Engelen M
Freilinger M
Grosso S
Hadzsiev K
Moroni I
Nardocci N
Neubauer D
Nicita F
Pagliano E
Siegert S
Soler D
van de Pol LA
Vasco G
Vidailhet M
Willemsen MA
Zibordi F
Zorzi G
Zumrova A
Reinhard C
Sevin C
Wolf N
Rodriguez-Blazquez C
Sival DA
Ortigoza-Escobar JD
author Amato ME
author_facet Amato ME
Darling A
Stovickova L
Attard S
Eggink H
Engelen M
Freilinger M
Grosso S
Hadzsiev K
Moroni I
Nardocci N
Neubauer D
Nicita F
Pagliano E
Siegert S
Soler D
van de Pol LA
Vasco G
Vidailhet M
Willemsen MA
Zibordi F
Zorzi G
Zumrova A
Reinhard C
Sevin C
Wolf N
Rodriguez-Blazquez C
Sival DA
Ortigoza-Escobar JD
author_role author
author2 Darling A
Stovickova L
Attard S
Eggink H
Engelen M
Freilinger M
Grosso S
Hadzsiev K
Moroni I
Nardocci N
Neubauer D
Nicita F
Pagliano E
Siegert S
Soler D
van de Pol LA
Vasco G
Vidailhet M
Willemsen MA
Zibordi F
Zorzi G
Zumrova A
Reinhard C
Sevin C
Wolf N
Rodriguez-Blazquez C
Sival DA
Ortigoza-Escobar JD
author2_role author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
dc.subject.none.fl_str_mv Movement disorders
Paediatrics
Rating scales
Ataxia
Dystonia
Myoclonus
topic Movement disorders
Paediatrics
Rating scales
Ataxia
Dystonia
Myoclonus
description Aim: This exploratory study evaluates rating scale usage by experts from the European Reference Network for Rare Neurological Diseases (ERN-RND) for paediatric MD, considering factors like diagnosis, intellectual disability, age, and transition to adult care. The aim is to propose a preliminary framework for consistent application. Methods: A multicentre survey among 25 ERN-RND experts from 10 European countries examined rating scale usage in paediatric MD, categorizing MD into acute, non-progressive, and neurodegenerative types. Factors influencing scale choice and the transition to adult care practices were analysed. A comprehensive literature search was conducted to identify the earliest age of application of these scales in paediatric patients. Results: The study identifies various rating scales and establishes their usage frequencies for different MDs. Experts highlighted the need for standardized scales and proposed preliminary evaluation strategies based on clinical contexts. Challenges in applying scales to young, non-cooperative patients were acknowledged. Interpretation: The study recommends developing standardized rating scales for paediatric MDs to improve evaluations and data collection. It suggests potential scales for specific clinical scenarios to better evaluate disease progression. Comprehensive, patient-centred care remains crucial during the transition to adult care, despite the identified challenges. This exploratory approach aims to enhance patient outcomes and care.
publishDate 2024
dc.date.none.fl_str_mv 2024
dc.type.none.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv https://fsjd.fundanetsuite.com/Publicaciones/ProdCientif/PublicacionFrw.aspx?id=26520
url https://fsjd.fundanetsuite.com/Publicaciones/ProdCientif/PublicacionFrw.aspx?id=26520
dc.language.none.fl_str_mv Inglés
language_invalid_str_mv Inglés
dc.rights.none.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.publisher.none.fl_str_mv ELSEVIER SCI LTD
publisher.none.fl_str_mv ELSEVIER SCI LTD
dc.source.none.fl_str_mv EUROPEAN JOURNAL OF PAEDIATRIC NEUROLOGY
ISSN: 10903798
ISSNe: 15322130
reponame:r-FSJD. Repositorio Institucional de Producción Científica de la Fundació Sant Joan de Déu
instname:Fundació Sant Joan de Déu
instname_str Fundació Sant Joan de Déu
reponame_str r-FSJD. Repositorio Institucional de Producción Científica de la Fundació Sant Joan de Déu
collection r-FSJD. Repositorio Institucional de Producción Científica de la Fundació Sant Joan de Déu
repository.name.fl_str_mv
repository.mail.fl_str_mv
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score 15,811543

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