A new self-report quality of life questionnaire for children with neuromuscular disorders: presentation of the instrument, rationale for its development, and some preliminary results.

@article{Orcesi2014ANS,
  title={A new self-report quality of life questionnaire for children with neuromuscular disorders: presentation of the instrument, rationale for its development, and some preliminary results.},
  author={Simona Orcesi and Giada Ariaudo and Eugenio Mercuri and Ettore Beghi and Cristiana Rezzani and Umberto Balottin},
  journal={Journal of child neurology},
  year={2014},
  volume={29 2},
  pages={167-81}
}
Improvement of quality of life in neuromuscular disorders is a primary objective, both in management of affected children and in the context of therapeutic trials. Quality of life is a subjective concept and it is crucial to gather information directly from patients. We created the SOLE Questionnaire for NMDs, a new instrument designed to investigate quality of life in children with neuromuscular disorders, and tested it in a study population of 78 patients and in 81 healthy children aged 5 to… CONTINUE READING