Until recently, there was no specific tool for assessing the quality of life of children and adolescents with Duchenne muscular dystrophy (DMD). A group of French neuropaediatricians tested the French version of the PedsQL module dedicated to DMD:
- 107 DMD patients and their parents were included in the validation study,
- four dimensions were explored (daily activities, treatment, concerns, communication),
- The congruence between the children’s responses and those of their parents was satisfactory, although not as good as in the validation study of the English version,
- the terms “medication” and “physiotherapy” were substituted for the more vague “treatment”,
Although this study validates the French version of the DMD module of the PedsQOL, the authors highlight the many methodological limitations of this tool, in particular for children with mild cognitive impairment.
