Sistema de Salut de Catalunya
Institut Català de la Salut
[Pringsheim T] Department of Clinical Neurosciences, Psychiatry, Pediatrics and Community Health Sciences, University of Calgary, Calgary, AB, Canada. [Batla A] Department of Clinical and Movement Neuroscience, UCL Queen Square Institute of Neurology, London, UK. [Shalash A] Department of Neurology, Faculty of medicine, Ain Shams Univeristy, Cairo, Egypt. [Sahu JK] Pediatric Neurology Unit, Postgraduate Institute of Medical Education and Research, Chandigarh, India. [Cosentino C] Department of Neurodegenerative Diseases, Instituto Nacional de Ciencias Neurologicas and School of Medicine, Universidad Nacional Mayor de San Marcos, Lima, Peru. [Ebrahimi-Fakhari D] Department of Neurology, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA. [Perez-Dueñas B] Servei de Neurologia Pediàtrica, Vall d’Hebron Hospital Universitari, Barcelona, Spain. Universitat Autònoma de Barcelona, Bellaterra, Spain. Centre for Biomedical Research of Rare Diseases (CIBERER), ISCIII, Madrid, Spain
Vall d'Hebron Barcelona Hospital Campus
2023-05-30T10:50:08Z
2023-05-30T10:50:08Z
2023-05
Movement disorders: Pediatrics
Trastornos del movimiento; Pediatría
Trastorns del moviment; Pediatria
Background The International Parkinson and Movement Disorders Society (MDS) set up a working group on pediatric movement disorders (MDS Task Force on Pediatrics) to generate recommendations to guide the transition process from pediatrics to adult health care systems in patients with childhood-onset movement disorders. Methods To develop recommendations for transitional care for childhood onset movement disorders, we used a formal consensus development process, using a multi-round, web-based Delphi survey. The Delphi survey was based on the results of the scoping review of the literature and the results of a survey of MDS members on transition practices. Through iterative discussions, we generated the recommendations included in the survey. The MDS Task Force on Pediatrics were the voting members for the Delphi survey. The task force members comprise 23 child and adult neurologists with expertise in the field of movement disorders and from all regions of the world. Results Fifteen recommendations divided across four different areas were made pertaining to: (1) team composition and structure, (2) planning and readiness, (3) goals of care, and (4) administration and research. All recommendations achieved consensus with a median score of 7 or greater. Conclusion Recommendations on providing transitional care for patients with childhood onset movement disorders are provided. Nevertheless several challenges remain in the implementation of these recommendations, related to health infrastructure and the distribution of health resources, and the availability of knowledgeable and interested practitioners. Research on the influence of transitional care programs on outcomes in childhood onset movement disorders is much needed.
This study was funded by the International Parkinson's and Movement Disorders Society. The authors have no financial disclosures or conflicts of interest concerning the research related to the manuscript.
Article
Published version
English
Infants; Enquestes; Trastorns motors; ANALYTICAL, DIAGNOSTIC AND THERAPEUTIC TECHNIQUES, AND EQUIPMENT::Investigative Techniques::Epidemiologic Methods::Data Collection::Surveys and Questionnaires; NAMED GROUPS::Persons::Age Groups::Child; DISEASES::Nervous System Diseases::Central Nervous System Diseases::Movement Disorders; TÉCNICAS Y EQUIPOS ANALÍTICOS, DIAGNÓSTICOS Y TERAPÉUTICOS::técnicas de investigación::métodos epidemiológicos::recopilación de datos::encuestas y cuestionarios; DENOMINACIONES DE GRUPOS::personas::Grupos de Edad::niño; ENFERMEDADES::enfermedades del sistema nervioso::enfermedades del sistema nervioso central::trastornos del movimiento
Wiley
Movement Disorders Clinical Practice;10(5)
https://doi.org/10.1002/mdc3.13728
Attribution 4.0 International
http://creativecommons.org/licenses/by/4.0/
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