Abstract

Although the qualitative nature of our methodology and lack of a control group limit the extent to which conclusions can be firmly drawn, our data nevertheless clearly indicate that chronic pain is a significant problem for youths with neuromuscular diseases. The next step would be multi-centred studies done with larger numbers of children, each focusing on a single neuromuscular disease, rather than a diverse mixture of diseases such as was done in this study. Separating out studies into single-disease entities would allow investigators to compare the experiences of
children with differing disorders, both myopathic and neuropathic. This would hopefully permit the formulation of better, more specific diagnostic tools and ultimately facilitate the development of effective treatment paradigms.