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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


Jo Robson
Consultant Associate Professor in Rheumatology

Jill Dawson

Alison- Bromhead

Emma Dures
Associate Professor in Rheumatology and Self-management

Catherine- Guly

Elizabeth- Hoon

Sarah Mackie
Faculty Lead on Practice-Oriented Curriculum

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Dr Mwidimi Ndosi
Associate Professor in Nursing Rheumatology

John Pauling

Catherine Hill


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.


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.

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
Public URL


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