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Improving paediatric movement disorders care: Insights on rating scales utilization and clinical practice
ME. Amato, A. Darling, L. Stovickova, S. Attard, H. Eggink, M. Engelen, M. Freilinger, S. Grosso, K. Hadzsiev, I. Moroni, N. Nardocci, D. Neubauer, F. Nicita, E. Pagliano, S. Siegert, D. Soler, LA. van de Pol, G. Vasco, M. Vidailhet, MA....
Jazyk angličtina Země Anglie, Velká Británie
Typ dokumentu časopisecké články, multicentrická studie
- MeSH
- dítě MeSH
- lidé MeSH
- mladiství MeSH
- pediatrie normy metody MeSH
- pohybové poruchy * terapie diagnóza MeSH
- přechod k lékaři pro dospělé normy MeSH
- stupeň závažnosti nemoci MeSH
- Check Tag
- dítě MeSH
- lidé MeSH
- mladiství MeSH
- Publikační typ
- časopisecké články MeSH
- multicentrická studie MeSH
- Geografické názvy
- Evropa MeSH
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.
Amsterdam Neuroscience Cellular and Molecular Mechanisms Amsterdam the Netherlands
Centre for Rare Diseases University Hospital Tübingen Tübingen Germany
Clinical Pediatrics Department of Molecular Medicine and Development University of Siena Siena Italy
Department of Medical Genetics Medical School University of Pécs Pécs Hungary
Department of Paediatric Neurology Hospital Sant Joan de Déu Barcelona Spain
Department of Pediatric Neurosciences Fondazione IRCCS Istituto Neurologico Carlo Besta Milan Italy
Department of Pediatrics and Adolescent Medicine Medical University of Vienna Vienna Austria
Emma Children's Hospital Amsterdam UMC Meibergdreef 9 Amsterdam the Netherlands
Institute for Medical Genetics and Applied Genomics University of Tübingen Tübingen Germany
National Centre for Epidemiology and CIBERNED Carlos 3 Institute of Health Madrid Spain
Pediatric Neurology Department Hôpital Bicêtre Le Kremlin Bicêtre France
Pediatric Neurology Department Mater Dei Hospital Malta
U 703 Centre for Biomedical Research on Rare Diseases Instituto de Salud Carlos 3 Barcelona Spain
Citace poskytuje Crossref.org
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- $a Improving paediatric movement disorders care: Insights on rating scales utilization and clinical practice / $c ME. Amato, A. Darling, L. Stovickova, S. Attard, H. Eggink, M. Engelen, M. Freilinger, S. Grosso, K. Hadzsiev, I. Moroni, N. Nardocci, D. Neubauer, F. Nicita, E. Pagliano, S. Siegert, D. Soler, LA. van de Pol, G. Vasco, M. Vidailhet, MA. Willemsen, F. Zibordi, G. Zorzi, A. Zumrova, C. Reinhard, C. Sevin, N. Wolf, C. Rodriguez-Blazquez, DA. Sival, JD. Ortigoza-Escobar, Pediatric issues working group of the European Reference Network for Rare Neurological Diseases (ERN-RND)
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