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Improving paediatric movement disorders care: Insights on rating scales utilization and clinical practice
María Eugenia Amato1, Alejandra Darling1, Lucie Stovickova2
1Department of Paediatric Neurology, Hospital Sant Joan de Déu, Barcelona, Spain.
Insights
This study explored rating scale use in pediatric Movement Disorders (MD) by European experts. Standardized scales are recommended to improve evaluation and care, especially during the transition to adult services.
Area of Science:
- Neurology
- Paediatric Medicine
- Rare Diseases
Background:
- Movement Disorders (MD) in children present complex diagnostic and management challenges.
- Current rating scale usage for paediatric MD varies significantly among experts.
- Standardization is needed for consistent evaluation and data collection in rare neurological diseases.
Purpose of the Study:
- To evaluate current rating scale practices for paediatric MD among European Reference Network for Rare Neurological Diseases (ERN-RND) experts.
- To identify factors influencing scale selection, including diagnosis, intellectual disability, and age.
- To propose a preliminary framework for consistent rating scale application and facilitate transition to adult care.
Main Methods:
- A multicentre survey was conducted among 25 ERN-RND experts across 10 European countries.
- Paediatric MD was categorized into acute, non-progressive, and neurodegenerative types for analysis.
- A literature search identified the earliest age of scale application in paediatric patients.
Main Results:
- Various rating scales are currently used, with varying frequencies for different MD types.
- Experts emphasized the need for standardized scales and proposed context-specific evaluation strategies.
- Challenges exist in applying scales to young, non-cooperative paediatric patients.
Conclusions:
- Developing standardized rating scales for paediatric MD is recommended to enhance evaluations and data collection.
- Specific scales may be suitable for particular clinical scenarios to track disease progression.
- Patient-centred care is vital during the transition from paediatric to adult services.
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.
