Dr. med. Bettina C. Henzi (Basel / CH; Freiburg / DE), Dominique Baumann (Bern / CH), Eleftheria Michalopoulou (Bern / CH), Annette Nageleisen-Weiss (Basel / CH), Sarah J. Erni (Bern / CH), Nadine Lötscher (Bern / CH), Anne Tscherter (Bern / CH), Prof. Dr. med. Andrea Klein (Basel / CH; Bern / CH)
Abstract-Text (inkl. Referenzen)
Background
Two thirds of patients with Duchenne Muscular Dystrophy (DMD) have cognitive and neuropsychiatric problems. Quality of life in DMD is negatively affected by the lack of qualifying education and the lack of opportunities for participation in leisure activities.
Methods
We conducted a survey study on education and participation in young DMD patients in Switzerland. To descriptively investigate correlations between participants" mobility, school performance and participation in leisure activities, we constructed sum scores by dichotomizing the answers of selected questions related to these variables (1: more advanced, 0: less advanced disease). Quality of life and executive function were assessed using KIDSCREEN-10 and BRIEF scores, respectively.
Results
Out of in total 60 dispatched surveys, 40 (67%) were filled out and included. More than half of the participants (58%) were wheelchair-bound, 22% used wheelchair for longer distances and 20% were ambulant. Approximately half of the participants (53%) went to a special needs school, and 85% rated their overall health as good. We did not observe a correlation between mobility and quality of life in our descriptive analysis. When comparing the quality of life with leisure activities, we see a correlation for higher quality of life in participants with more social participation.
Conclusion
This survey study underlines the need for adapted assistance in patients with DMD to facilitate their social participation.