Patient perceptions of health-related quality of life in giant cell arteritis: International development of a disease-specific patient-reported outcome measure

Robson, Joanna C.; Almeida, Celia; Dawson, Jill; Bromhead, Alison-; Dures, Emma; Guly, Catherine-; Hoon, Elizabeth-; MacKie, Sarah; Ndosi, Mwidimi; Pauling, John; Hill, Catherine

Abstract

Objectives: GCA is a large vessel vasculitis (LVV) presenting with headache, jaw claudication, musculoskeletal and visual involvement. Current treatment is glucocorticoids and anti-IL-6 tocilizumab in refractory disease. The objective of this study was to explore the impact of GCA and its treatment on people's health-related quality of life (HRQoL), to inform the development of a disease-specific patient-reported outcome measure (PROM) for use in clinical trials and practice. Methods: Participants from the UK and Australia, with biopsy- or imaging-confirmed GCA, were interviewed to identify salient aspects of HRQoL in relation to GCA and its treatment. Purposive sampling included a range of demographic and disease features (cranial, LVV-GCA and visual involvement). Inductive analysis identified individual themes of importance, then domains. Candidate questionnaire items were developed from the individual themes, refined by piloting, cognitive interviews and a linguistic translatability assessment. Results: Thirty-six interviews were conducted to saturation with participants with GCA from the UK (25) and Australia (11). Mean age was 74 years, 23 (63.9%) were female, 13 (36.1%) had visual loss and 5 (13.9%) had LVV-GCA. Thirty-nine individual themes within five domains were identified: physical symptoms; activity of daily living and function; participation; psychological impact; and impact on sense of self and perception of health. Sixty-nine candidate items were developed from individual themes; piloting and refinement resulted in a 40-item draft questionnaire. Conclusion: This international qualitative study underpins the development of candidate items for a disease-specific PROM for GCA. The draft questionnaire is now ready for psychometric testing.

Citation

Robson, J. C., Almeida, C., Dawson, J., Bromhead, A., Dures, E., Guly, C., …Hill, C. (2021). Patient perceptions of health-related quality of life in giant cell arteritis: International development of a disease-specific patient-reported outcome measure. Rheumatology, 60(10), 4671-4680. https://doi.org/10.1093/rheumatology/keab076

• Journal Article Type: Article
• Acceptance Date: Jan 13, 2021
• Online Publication Date: Feb 2, 2021
• Publication Date: 2021-10
• Deposit Date: Jan 19, 2021
• Publicly Available Date: Oct 19, 2021
• Journal: Rheumatology (United Kingdom)
• Print ISSN: 1462-0324
• Electronic ISSN: 1462-0332
• Publisher: Oxford University Press (OUP)
• Peer Reviewed: Peer Reviewed
• Volume: 60
• Issue: 10
• Pages: 4671-4680
• DOI: https://doi.org/10.1093/rheumatology/keab076
• Public URL: https://uwe-repository.worktribe.com/output/6997875