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

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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.

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