The emotional weight and the burden of care affect the quality of life of caregivers of patients with Duchenne muscular dystrophy (DMD). An American team has developed a new tool based on a series of items already used for this disease in the context of PROMIS (Patient-Reported Outcome Measurement Information System):
- it was tested in 521 caregivers, mostly parents of young patients with DMD, in the form of a questionnaire completed, during the development phase, using structured interviews;
- this tool proved to be beneficial, suited to this population and easy to use;
- it is also more specific to DMD than PROMIS alone, which is a generic tool.