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Health related quality of life in ANCA associated vasculitis and item generation for a disease specific patient reported outcome measure

Robson, Joanna C; Dawson, Jill; Cronholm, Peter; Milman, Nataliya; Kellom, Katherine; Ashdown, Susan; Easley, Ebony; Farrar, John; Gebhart, Don; Lanier, Georgia; McAclear, Carol; Peck, Jacqueline; Luqmani, Raashid; Shea, July; Tomasson, Gunnar; Merkel, Peter


Jo Robson
Consultant Associate Professor in Rheumatology

Jill Dawson

Peter Cronholm

Nataliya Milman

Katherine Kellom

Susan Ashdown

Ebony Easley

John Farrar

Don Gebhart

Georgia Lanier

Carol McAclear

Jacqueline Peck

Raashid Luqmani

July Shea

Gunnar Tomasson

Peter Merkel


Objective: The anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitides (AAVs) are multisystem diseases of the small blood vessels. Patients experience irreversible damage and psychological effects from AAV and its treatment. An international collaboration was created to investigate the impact of AAV on health-related quality of life (HRQoL), and develop a disease-specific patient-reported outcome measure to assess outcomes of importance to patients.
Methods: Patients with AAV from the UK, US, and Canada were interviewed to identify salient aspects of HRQoL affected by AAV. The study was overseen by a steering committee including four patient research partners. Purposive sampling of interviewees ensured representation of a range of disease manifestations and demographics. Inductive analysis was used to identify themes of importance to patients; these were further confirmed by a free-listing exercise in the US. Individual themes were recast into candidate items, which were scrutinized by patients, piloted through cognitive interviews and received a linguistic and translatability evaluation.
Results: Fifty interviews, conducted to saturation, with patients from the UK, US and Canada, identified 55 individual themes of interest within seven broad domains: general health perceptions, impact on function, psychological perceptions, social perceptions, social contact, social role and symptoms. Individual themes were constructed into >100 candidate questionnaire items which were then reduced and refined to 35 candidate items.
Conclusion: This is the largest international qualitative analysis of health related quality of life in ANCA associated vasculitis to date, the results have underpinned the development of 35 candidate items for a disease-specific, patient-reported outcome questionnaire.


Robson, J. C., Dawson, J., Cronholm, P., Milman, N., Kellom, K., Ashdown, S., …Merkel, P. (2018). Health related quality of life in ANCA associated vasculitis and item generation for a disease specific patient reported outcome measure. Patient Related Outcome Measures, 9, 17-34.

Journal Article Type Article
Acceptance Date Oct 13, 2017
Publication Date Jan 1, 2018
Publicly Available Date Mar 28, 2018
Journal Patient Related Outcome Measures
Publisher Dove Medical Press
Peer Reviewed Peer Reviewed
Volume 9
Pages 17-34
Keywords ANCA-associated vasculitis, PRO, PROM, patient related outcome,
qualitative research
Public URL
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