A French consortium of experts, coordinated by the Nice Neuromuscular Reference Centre, has developed a questionnaire called Active-NMD:
- this new tool is designed for patients to measure the impact of the disease on daily life, particularly in terms of quality of life,
- it was developed by a panel of 11 experts in the field, using the Delphi method, and was subsequently validated on a test group of ten patients,
- after removing redundant, irrelevant or non-reproducible items, the final version of Active-NMD now contains only 25 questions out of the initial 130,
- the tool meets all the necessary psychometric criteria for wider use.
It now remains to test it on a larger sample and to consider its roll-out in other countries.
