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CC BY 4.0 · Neuropediatrics 2023; 54(04): 287-291
DOI: 10.1055/s-0043-1764434
Short Communication

Effects of the COVID-19 Pandemic on Access to Education and Social Participation in Children and Adolescents with Duchenne Muscular Dystrophy in Switzerland

Autoren

  • Bettina C. Henzi

    1   Department of Pediatric Neurology and Developmental Medicine, University Children's Hospital Basel, University of Basel, Basel, Switzerland

  • Dominique Baumann

    2   Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland

  • Sarah J. Erni

    3   Division of Neuropediatrics, Development and Rehabilitation, Department of Pediatrics, University Hospital of Bern (Inselspital), University of Bern, Bern, Switzerland

  • Nadine Lötscher

    2   Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland

  • Anne Tscherter

    2   Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland

  • Andrea Klein

    1   Department of Pediatric Neurology and Developmental Medicine, University Children's Hospital Basel, University of Basel, Basel, Switzerland
    3   Division of Neuropediatrics, Development and Rehabilitation, Department of Pediatrics, University Hospital of Bern (Inselspital), University of Bern, Bern, Switzerland
    • on behalf of the Swiss-Reg-NMD Group

Funding This study was supported by Roche Pharma Switzerland, Pfizer AG, Sarepta International Holdings, and PTC Therapeutics Switzerland through grant agreements (research and educational).
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Abstract

Two-thirds of patients with Duchenne muscular dystrophy (DMD) have cognitive and neuropsychiatric problems. Concerning their quality of life, negative factors are the lack of qualifying education and social participation in sporting and leisure activities. Adapted assistance in education and participation in social life are thus important. During the coronavirus disease 2019 (COVID-19) pandemic, the pediatric population was less severely impacted by the disease, but by the restrictions associated. The aim of this study was to evaluate the impact of the COVID-19 pandemic regarding access to education and social participation for young patients with DMD in Switzerland. We conducted a survey study from May to August 2021 assessing the impact of the COVID-19 pandemic on access to education and social participation in 8 to 18 years old patients with DMD in Switzerland. Of 60 sent surveys, 40 were returned and included. Mean age of participants was 13.5 years (±3.1 standard deviation); 23/40 of the participants were wheelchair bound, 21/40 attended a special school, and 19/40 a regular school. Of the 22/40 participants receiving assistance at school, 7/40 reported a change caused by the pandemic: for 5/7, the assistance was paused. Of the 12 boys and adolescents attending sporting activities, 10 had to suspend these. Nine attended other leisure activities; for 3/9, these activities were paused. The COVID-19 pandemic had direct effects on school assistance, sporting, and leisure activities in young patients with DMD in Switzerland. It is important to ensure that school assistance and leisure activities are rapidly resumed.

Keywords

Duchenne muscular dystrophy - COVID-19 pandemic - education - participation

* The affiliations of Swiss-Reg-NMD Group are given in Appendix A.




Publikationsverlauf

Eingereicht: 28. April 2022

Angenommen: 17. Januar 2023

Artikel online veröffentlicht:
30. März 2023

© 2023. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution License, permitting unrestricted use, distribution, and reproduction so long as the original work is properly cited. (https://creativecommons.org/licenses/by/4.0/)

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