TY - JOUR
T1 - Improving paediatric movement disorders care
T2 - Insights on rating scales utilization and clinical practice
AU - Pediatric issues working group of the European Reference Network for Rare Neurological Diseases (ERN-RND)
AU - Amato, María Eugenia
AU - Darling, Alejandra
AU - Stovickova, Lucie
AU - Attard, Stephen
AU - Eggink, Hendriekje
AU - Engelen, Marc
AU - Freilinger, Michael
AU - Grosso, Salvatore
AU - Hadzsiev, Kinga
AU - Moroni, Isabella
AU - Nardocci, Nardo
AU - Neubauer, David
AU - Nicita, Francesco
AU - Pagliano, Emanuela
AU - Siegert, Sandy
AU - Soler, Doriette
AU - van de Pol, Laura A
AU - Vasco, Gessica
AU - Vidailhet, Marie
AU - Willemsen, Michel Aap
AU - Zibordi, Federica
AU - Zorzi, Giovanna
AU - Zumrova, Alena
AU - Reinhard, Carola
AU - Sevin, Caroline
AU - Wolf, Nicole
AU - Rodriguez-Blazquez, Carmen
AU - Sival, Deborah A
AU - Ortigoza-Escobar, Juan Darío
N1 - Copyright © 2024 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.
PY - 2024/9
Y1 - 2024/9
N2 - 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.
AB - 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.
U2 - 10.1016/j.ejpn.2024.06.011
DO - 10.1016/j.ejpn.2024.06.011
M3 - Article
C2 - 38970889
SN - 1090-3798
VL - 52
SP - 10
EP - 19
JO - European Journal of Paediatric Neurology
JF - European Journal of Paediatric Neurology
ER -