Characterizing the quality-of-life impact of Duchenne muscular dystrophy on caregivers: a case-control investigation.
Carolyn Emily SchwartzRoland B StarkIvana F AudhyaKatherine L GoochPublished in: Journal of patient-reported outcomes (2021)
DMD caregivers fared worse on most outcomes and faced more hurdles in work life. They face constraints and hidden costs that impact their health and financial well-being. Caregivers of teenagers with DMD reported higher impact. Nonetheless, parents of DMD children of all ages maintained notable resilience and positivity.