Improving paediatric movement disorders care: Insights on rating scales utilization and clinical practice
Por:
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 and Ortigoza-Escobar JD
Publicada:
1 sep 2024
Ahead of Print:
1 jul 2024
Resumen:
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.
Filiaciones:
:
Department of Paediatric Neurology, Hospital Sant Joan de Déu, Barcelona, Spain
Darling A:
Department of Paediatric Neurology, Hospital Sant Joan de Déu, Barcelona, Spain
Stovickova L:
Centre of Hereditary Ataxias, Department of Pediatric Neurology, Second Faculty of Medicine and Motol University Hospital, V Uvalu 84, 15006, Prague 5, Czech Republic
Attard S:
Pediatric Neurology Department, Mater Dei Hospital, Malta
Eggink H:
Department of Neurology, University of Groningen, University Medical Center Groningen, Hanzeplein 1, 9700 RB, Groningen, the Netherlands
Engelen M:
Department of Pediatric Neurology/Emma Children's Hospital, Academic Medical Center, University of Amsterdam, Amsterdam, 1100 DD, the Netherlands
Freilinger M:
Department of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria
Grosso S:
Clinical Pediatrics, Department of Molecular Medicine and Development, University of Siena, Siena, Italy
Hadzsiev K:
Department of Medical Genetics, Medical School, University of Pécs, Pécs, Hungary
Moroni I:
Department of Pediatric Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy
Nardocci N:
Department of Pediatric Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy
Neubauer D:
Department of Child, Adolescent & Developmental Neurology, University Children's Hospital, Ljubljana, Slovenia
Nicita F:
Unit of Neuromuscular and Neurodegenerative Disorders, IRCCS Bambino Gesù Children's Hospital, Rome, Italy
Pagliano E:
Department of Pediatric Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy
Siegert S:
Department of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria
Soler D:
Pediatric Neurology Department, Mater Dei Hospital, Malta
van de Pol LA:
Department of Child Neurology, Amsterdam UMC, Vrije Universiteit, De Boelelaan, 1117, Amsterdam, the Netherlands
Emma Children's Hospital, Amsterdam UMC, Meibergdreef 9, Amsterdam, the Netherlands
Vasco G:
Unit of Neurorehabilitation, Department of Neuroscience and Neurorehabilitation, IRCCS Bambino Gesù Children's Hospital, Rome, Italy
Vidailhet M:
Department of Neurology, Sorbonne University, Paris Brain Institute - ICM, Inserm, CNRS, Assistance Publique Hôpitaux de Paris, Pitié-Salpêtrière Hospital, Paris, France
Willemsen MA:
Department of Pediatric Neurology, Donders Centre for Neuroscience, Amalia Children's Hospital, Radboud University Medical Center, Nijmegen, the Netherlands
Zibordi F:
Department of Pediatric Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy
Zorzi G:
Department of Pediatric Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy
Zumrova A:
Centre of Hereditary Ataxias, Department of Pediatric Neurology, Second Faculty of Medicine and Motol University Hospital, V Uvalu 84, 15006, Prague 5, Czech Republic
Reinhard C:
Institute for Medical Genetics and Applied Genomics, University of Tübingen, Tübingen, Germany
Centre for Rare Diseases, University Hospital Tübingen, Tübingen, Germany
Sevin C:
Pediatric Neurology Department, Hôpital Bicêtre, Le Kremlin Bicêtre, France
Wolf N:
Department of Child Neurology, Amsterdam Leukodystrophy Center, Amsterdam UMC Location Vrije Universiteit Amsterdam, Emma's Children's Hospital, Boelelaan, 1117, Amsterdam, the Netherlands
Amsterdam Neuroscience, Cellular & Molecular Mechanisms, Amsterdam, the Netherlands
Rodriguez-Blazquez C:
National Centre for Epidemiology and CIBERNED, Carlos III Institute of Health, Madrid, Spain
Sival DA:
Expertise Center Movement Disorders Groningen, University Medical Center Groningen, Groningen, the Netherlands
Department of Pediatric Neurology, University of Groningen, University Medical Center Groningen, Beatrix Children's Hospital, Groningen, the Netherlands
Ortigoza-Escobar JD:
U-703 Centre for Biomedical Research on Rare Diseases (CIBER-ER), Instituto de Salud Carlos III, Barcelona, Spain
Department of Paediatric Neurology, Hospital Sant Joan de Déu, Barcelona, Spain
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