A comprehensive qualitative framework for health-related quality of life in Duchenne muscular dystrophy.
Philip A PowellJill CarltonPublished in: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation (2022)
A 30-item framework for HRQoL in DMD has been developed, which was used as input into a new condition-specific HRQoL PRO and preference-based measure: the DMD-QoL. The data has value in its own right in highlighting the lived experience of HRQoL for people with DMD and as a barometer for assessing the content of HRQoL PROs for use in DMD.