Health-related quality of life and productivity burden for non-professional caregivers of adults with rare diseases: a real-world study

Johnson, B., Gibson, G., Baskerville, D. et al. Health-related quality of life and productivity burden for non-professional caregivers of adults with rare diseases: a real-world study. Orphanet J Rare Dis 20, 282 (2025). doi:10.1186/s13023-025-03796-z 

The substantial burden of providing non-professional caregiving to adults with rare diseases is associated with multiple factors. Interventions improving care recipient HRQoL could enhance caregiver HRQoL and productivity.

Health-related quality of life and productivity burden for non-professional caregivers of adults with rare diseases: a real-world study