P135 Facilitators and barriers in living the desired adult life, despite having Duchenne muscular dystrophy (DMD)

This study explored the desired situation for adolescents and adults with Duchenne Muscular Dystrophy (DMD) concerning making their own choices during adult life. Besides, the view and role of parents in this process was explored. At last, the gap was captured between the current situation and the desired situation, with attention for the factors which are of influence on this gap. A prospective, cross-sectional survey was conducted. Topics from the survey were based on literature study, an expert meeting, and 20 interviews with adolescents and adults with DMD and their parents.
Source: Neuromuscular Disorders - Category: Neurology Authors: Source Type: research