Health-related quality of life and productivity burden for non-professional caregivers of adults with rare diseases: a real-world study
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.
Authors
- Rafael Pinedo‐Villanueva (ORCID: https://orcid.org/0000-0002-4723-5128)
- Gregor Gibson
- Ben Johnson (ORCID: https://orcid.org/0000-0003-3938-0920)
- James Piercy (ORCID: https://orcid.org/0000-0001-7015-1021)
- Angela Rylands (ORCID: https://orcid.org/0000-0002-7790-4724)
- Halima Iqbal (ORCID: https://orcid.org/0000-0003-0895-1479)
- Giorgio Castellano (ORCID: https://orcid.org/0000-0003-1408-3655)
- Jonathan de Courcy (ORCID: https://orcid.org/0000-0002-2100-5279)
- Angela Williams
- Daniel Baskerville
Institutions
- Nuffield Orthopaedic Centre (GB)
- University of Oxford (GB)
- Adelphi Group (United Kingdom) (GB)
- Kyowa Kirin International (United Kingdom) (GB)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-06-06
- DOI
- https://doi.org/10.1186/s13023-025-03796-z
- Citations
- 2
- Primary Topic
- Amyotrophic Lateral Sclerosis Research
- Type
- article
- Field-Weighted Citation Impact
- 2.78