Dystrophinopathies are progressive hereditary degenerative diseases of the fiber muscle. Spectrum of these diseases includes the Duchenne muscular dystrophy (DMD) and Becker muscular dystrophy (BMD). Although many dystrophinopathy patients require orthopedic care, few studies have assessed the impact of home physical therapy in this population and no specific recommendations are available. The aim of this study of patients with dystrophinopathies, was to describe orthopedic care at home in France.

We conducted a cross-sectional survey of patients with dystrophinopathies followed-up in one of departmental Family Services of the AFM-telethon, in France, between November 2013 and January 2014.

From 2013 to 2014, 663 patients (67% with DMD – 33% with BMD) were included in the study. Four hundred and forty (68.3%) patients were unable to walk. Among them, we showed a significant difference in patients which beneficiated of a tenotomy regarding the geographical location [12.4% in South vs. 28.5% in North, P<0.0001]. Tenotomy was associated with lower legs pain frequencies [32.0% vs. 60.0%, P<0.0001]. Average consultation time with physical therapist was significantly lower (i.e. less a quarter of an hour) regarding the geographical location [12.5% in North vs. 2.8% in South, P<0.03].

Our data suggest that there is a disparity of orthopedic care regarding the geographical location in France. Specific recommendations are needed to improve orthopedic care of in dystrophinopathies subjects.