Education and participation in children and adolescents with Duchenne muscular dystrophy in Switzerland
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| Název: | Education and participation in children and adolescents with Duchenne muscular dystrophy in Switzerland |
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| Autoři: | Bettina C. Henzi, Dominique Baumann, Eleftheria Michalopoulou, Sarah J. Erni, Leonie Steiner, Nadine Lötscher, Anne Tscherter, Andrea Klein, Berenice Bubl, Andrea Capone, Cornelia Enzmann, Joel Fluss, Oswald Hasselmann, David Jacquier, Hans H. Jung, Petra Kolditz, Claudia E. Kuehni, Christoph Neuwirth, Gian P. Ramelli, Paolo Ripellino, Oliver Scheidegger, Bettina Schreiner, Esther I. Schwarz, Georg M. Stettner |
| Přispěvatelé: | Swiss-Reg-NMD Group, Bubl, B., Capone, A., Enzmann, C., Fluss, J., Hasselmann, O., Jacquier, D., Jung, H.H., Kolditz, P., Kuehni, C.E., Neuwirth, C., Ramelli, G.P., Ripellino, P., Scheidegger, O., Schreiner, B., Schwarz, E.I., Stettner, G.M. |
| Zdroj: | European journal of paediatric neurology, vol. 56, pp. 107-114 |
| Informace o vydavateli: | Elsevier BV, 2025. |
| Rok vydání: | 2025 |
| Témata: | Duchenne muscular dystrophy, Quality of life, Survey study, Humans, Muscular Dystrophy, Duchenne/psychology, Muscular Dystrophy, Duchenne/physiopathology, Child, Male, Adolescent, Switzerland/epidemiology, Quality of Life/psychology, Social Participation/psychology, Executive Function/physiology, Surveys and Questionnaires, Leisure Activities, Educational Status, Education, Executive dysfunction, Social participation |
| Popis: | Quality of life in Duchenne muscular dystrophy has been reported to be negatively affected by the lack of qualifying education and the lack of opportunities for participation in leisure activities. Two thirds of patients with Duchenne muscular dystrophy have cognitive and/or psychiatric problems. Thus, we conducted a survey study on mobility, school problems, executive functions, social participation and quality of life in young patients in Switzerland. We contacted 60 male patients with Duchenne muscular dystrophy aged 8-18 years through the Swiss Registry for Neuromuscular Disorders. Mobility, school problems and social participation in leisure activities were assessed with a self-constructed questionnaire. Quality of life and executive function were assessed using KIDSCREEN-10 and BRIEF scores, respectively. Out of 60 dispatched surveys, 67 % were filled out and included. Approximately half of the participants went to a special needs school, and 83 % rated their overall quality of life as good. We did not find a correlation between mobility and quality of life, whereas more social participation was correlated with higher quality of life. Furthermore, patients with more difficulties in executive functions showed less participation and lower quality of life. These results underline the need for neuropsychological and adapted assistance in patients with Duchenne muscular dystrophy to facilitate education and social participation. |
| Druh dokumentu: | Article Other literature type |
| Popis souboru: | application/pdf |
| Jazyk: | English |
| ISSN: | 1090-3798 |
| DOI: | 10.1016/j.ejpn.2025.03.010 |
| DOI: | 10.48620/88237 |
| Přístupová URL adresa: | https://pubmed.ncbi.nlm.nih.gov/40349652 https://serval.unil.ch/resource/serval:BIB_4E9966D53EF5.P001/REF.pdf https://serval.unil.ch/notice/serval:BIB_4E9966D53EF5 http://nbn-resolving.org/urn/resolver.pl?urn=urn:nbn:ch:serval-BIB_4E9966D53EF54 |
| Rights: | CC BY |
| Přístupové číslo: | edsair.doi.dedup.....3bbc90c3ce8e547fa8a7ea50e8cbb76c |
| Databáze: | OpenAIRE |
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Nájsť tento článok vo Web of Science | Abstrakt: | Quality of life in Duchenne muscular dystrophy has been reported to be negatively affected by the lack of qualifying education and the lack of opportunities for participation in leisure activities. Two thirds of patients with Duchenne muscular dystrophy have cognitive and/or psychiatric problems. Thus, we conducted a survey study on mobility, school problems, executive functions, social participation and quality of life in young patients in Switzerland. We contacted 60 male patients with Duchenne muscular dystrophy aged 8-18 years through the Swiss Registry for Neuromuscular Disorders. Mobility, school problems and social participation in leisure activities were assessed with a self-constructed questionnaire. Quality of life and executive function were assessed using KIDSCREEN-10 and BRIEF scores, respectively. Out of 60 dispatched surveys, 67 % were filled out and included. Approximately half of the participants went to a special needs school, and 83 % rated their overall quality of life as good. We did not find a correlation between mobility and quality of life, whereas more social participation was correlated with higher quality of life. Furthermore, patients with more difficulties in executive functions showed less participation and lower quality of life. These results underline the need for neuropsychological and adapted assistance in patients with Duchenne muscular dystrophy to facilitate education and social participation. |
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| ISSN: | 10903798 |
| DOI: | 10.1016/j.ejpn.2025.03.010 |