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Lookup NU author(s): Dr Anna Mayhew, Catherine TurnerORCiD, Jassi Sodhi, Meredith JamesORCiD, Adam Kerr, Professor Michela GuglieriORCiD
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© 2025Duchenne muscular dystrophy is a neuromuscular disorder which has benefited from the implementation of key management strategies embedded in International Standards of Care. This study was prompted by the need for more practical, implementable guidance for physiotherapists and occupational therapists than were presented in the international guidelines. Using two web-based surveys, we explored how therapy is currently being delivered in the UK at specialist neuromuscular clinics as well as in community settings, and how it could be improved. The surveys showed that a significant proportion of families report they are not accessing any physiotherapy in either neuromuscular centres (23 %) or in the community (33 %) and that occupational therapy was particularly limited in neuromuscular centres (lacking in 70 %) but also in the community (33 %). There was evidence that, although much is reported as positive about appointments, key gaps are evident. The feedback from families and therapists indicates that care could be better delivered by improving communication, alongside upskilling and education of therapists and families. It demonstrated the value of and real need for a guide for therapists for Duchenne muscular dystrophy as well as a simultaneous family guide to facilitate the improvements identified.
Author(s): Mayhew A, Turner C, Wolfe A, Pietrusz A, Pallant L, Di Marco M, McMurchie H, Rabb R, Warner S, Burnett N, Massey C, Main M, Brown S, Sodhi J, Tobin A, Wooding D, Davis H, Gallagher E, James MK, Narayan S, Kerr A, Thakrar S, Johnson A, Guglieri M
Publication type: Article
Publication status: Published
Journal: European Journal of Paediatric Neurology
Year: 2025
Volume: 55
Pages: 87-96
Print publication date: 01/03/2025
Online publication date: 10/04/2025
Acceptance date: 25/03/2025
Date deposited: 10/04/2025
ISSN (print): 1090-3798
ISSN (electronic): 1532-2130
Publisher: W.B. Saunders Ltd
URL: https://doi.org/10.1016/j.ejpn.2025.03.011
DOI: 10.1016/j.ejpn.2025.03.011
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