Neuromuscular disease: health care accessibility in the Nord-Pas-de- Calais region

A survey was conducted to estimate accessibility to current diagnostic techniques for patients with neuromuscular disease living in the Nord-Pas-de-Calais. In association with the "Association fran?aise contre les myopathies", we invited 200 adults with neuromuscular disease to fill out a questionnaire concerning diagnosis of their neuromuscular disease and medical and paramedical follow-up. Each subject answered the questionnaire anonymously providing data on sociodemographic items, diagnosis and medical and paramedical follow-up. The results showed a lack of follow-up for lung disease whereas respiratory failure is known as a frequent complication of neuromuscular disease. Genetic counselling was not suggested often enough. A large proportion (80 p. 100) of the patients had had physiotherapy. Whereas cardiomyopathy and orthopedic buckling with subsequent decreased autonomy are observed in 90 p. 100 of patients with Duchenne muscular dystrophy, only 42 p. 100 of the patients with this disease were followed by a cardiologist and a physical therapists. We suggest more cooperation between specialists in order to improve medical care for patients with neuromuscular diseases.