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

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

Authors :
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
Source :
European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society [Eur J Paediatr Neurol] 2024 Sep; Vol. 52, pp. 10-19. Date of Electronic Publication: 2024 Jun 29.
Publication Year :
2024

Abstract

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.<br />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.<br />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.<br />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.<br />Competing Interests: Declaration of competing interest We hereby affirm that all authors involved in the preparation of this manuscript declare no conflicts of interest. This includes financial, personal, or professional relationships that could potentially influence the interpretation of the work presented herein.<br /> (Copyright © 2024 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.)

Details

Language :
English
ISSN :
1532-2130
Volume :
52
Database :
MEDLINE
Journal :
European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society
Publication Type :
Academic Journal
Accession number :
38970889
Full Text :
https://doi.org/10.1016/j.ejpn.2024.06.011