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.

• 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