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

• Published in: European journal of paediatric neurology 2024-09, Vol.52, p.10-19
• Main Authors: Amato, María Eugenia, Darling, Alejandra, Stovickova, Lucie, Attard, Stephen, Eggink, Hendriekje, Engelen, Marc, Freilinger, Michael, Grosso, Salvatore, Hadzsiev, Kinga, Moroni, Isabella, Nardocci, Nardo, Neubauer, David, Nicita, Francesco, Pagliano, Emanuela, Siegert, Sandy, Soler, Doriette, van de Pol, Laura A., Vasco, Gessica, Vidailhet, Marie, Willemsen, Michel AAP, Zibordi, Federica, Zorzi, Giovanna, Zumrova, Alena, Reinhard, Carola, Sevin, Caroline, Wolf, Nicole, Rodriguez-Blazquez, Carmen, Sival, Deborah A., Ortigoza-Escobar, Juan Darío
• Format: Article
• Language: English
• Subjects: Ataxia; Dystonia; Movement disorders; Myoclonus; Paediatrics; Rating scales
• ISSN: 1090-3798; 1532-2130; 1532-2130
• DOI: 10.1016/j.ejpn.2024.06.011

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. 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. 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. 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. •Application of rating scales for movement disorders should be standardized in children.•Neurodevelopment, quality of life, and cognitive function should also be assessed.•Age, intellectual disability, multiple movement disorders, and genetic diagnoses influence the assessment.•Rating scales are crucial as a quality indicator of the paediatric-adult care transition.