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

Author information

Robson JC1,2, Dawson J3, Cronholm PF4, Milman N5, Kellom KS6, Ashdown S7, Easley E8, Farrar JT9, Gebhart D10,11, Lanier G10,11, McAlear CA12, Peck J7, Luqmani RA7, Shea JA13, Tomasson G14, Merkel PA10,11. Patient Relat Outcome Meas. 2018 Jan 4;9:17-34. doi: 10.2147/PROM.S144992. eCollection 2018.

Abstract

Author information 1 Department of Rheumatology, Faculty of Health and Applied Sciences, University of the West of England, Bristol, UK.

2 School of Clinical Sciences, University of Bristol, Bristol, UK.

3 Department of Population Health (HSRU), University of Oxford, Oxford, UK.

4 Department of Family Medicine and Community Health, University of Pennsylvania, Philadelphia, PA, USA.

5 Division of Rheumatology, Department of Medicine, University of Ottawa, Ottawa Hospital Research Institute, Ottawa, ON, Canada.

6 PolicyLab, Children's Hospital of Philadelphia, Philadelphia, PA, USA.

7 Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK.

8 Department of Family Medicine and Community Health, Mixed Methods Research Laboratory, University of Pennsylvania, Philadelphia, PA, USA.

9 Biostatistics and Epidemiology, Hospital of the University of Pennsylvania, Philadelphia, PA, USA.

10 Division of Rheumatology, Department of Medicine, University of Pennsylvania, Philadelphia, PA, USA.

11 Department of Biostatistics and Clinical Epidemiology, University of Pennsylvania, Philadelphia, PA, USA.

12 Vasculitis Research, University of Pennsylvania, Philadelphia, PA, USA.

13 School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.

14 Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland.

Abstract

OBJECTIVE:

The antineutrophil 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, USA, 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, USA, 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 HRQoL in AAV to date, and the results have underpinned the development of 35 candidate items for a disease-specific, patient-reported outcome questionnaire.