DMD as seen by caregivers: a new measurement tool is available

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.

 

Measuring Duchenne muscular dystrophy impact: development of a proxy-reported measure derived from PROMIS item banks. Schwartz CE, Stark RB, Cella D, Borowiec K, Gooch KL, Audhya IF. Orphanet J Rare Dis. 2021 Nov 22;16(1):487.