Maladies et incapacites, allocations et modes de transports: correlations chez les membres d'une association de patients avec maladies neuromusculaires. Pour l'Association Suisse Romande contre la Myopathie. [Correlation of diseases and disabilities and allocation and modes of transport among the members of an association of patients with neuromuscular diseases. For the Association Suisse Romande contre la Myopathie]

Abstract

Seventy-nine patients with various chronic neuromuscular disorders returned a questionnaire. We analyzed the linkage between demographic and socio-economic data, type of disease and disability, and types of transportation used. This study shows that whatever type of disability, all patients attach a significant priority to the use of their private vehicle, and that (i) there is a significant correlation between severity of disability and use of disabled people transportation system but not with revenue nor with type of professional activity, and (ii) satisfaction rate is inversely proportional to severity of disability. The relationship between disability and disabled people transportation system appears as logical, but those between revenue and type of transportation is rather complex (role of family, of special refunds from insurance industry, possibility of special loans from the patient organization). The absence of correlation between severity of disability and professional activity must be explained by our choice concerning the scale of disability, which appears too simplistic according to the complexity of the different neuromuscular disorders. It is concluded that (i) co-operation and consultation are needed to give patients better access to disabled people transportation system and to improve technical aids to drive private vehicle and (ii) a more appropriated scale to quantitate disability in neuromuscular disorder patients is needed