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. 2023 Aug;54(4):287-291.
doi: 10.1055/s-0043-1764434. Epub 2023 Mar 30.

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

Bettina C Henzi  1 , Dominique Baumann  2 , Sarah J Erni  3 , Nadine Lötscher  2 , Anne Tscherter  2 , Andrea Klein  1   3 ; Swiss-Reg-NMD Group
Affiliations

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

Bettina C Henzi et al. Neuropediatrics. 2023 Aug.

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.

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Conflict of interest statement

B.C.H. and S.J.E. declare no conflict of interest; D.B., N.L., and A.T. declare financial support for the present study paid to the Institute of Social and Preventive Medicine (ISPM) from Pfizer AG, PTC Therapeutics, Roche Pharma and Sarepta; A.K. declares speakers' honoraria, advisory board activities for Santhera and Sarepta, and presidency of scientific committee of AFM medical research board.

Figures

Fig. 1
Fig. 1
Effects of the coronavirus disease 2019 pandemic on access to education and social participation in young people with Duchenne muscular dystrophy in Switzerland from March 2020 to May 2021.
See this image and copyright information in PMC

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