Display options
Cite
Robson JC, Dawson J, Cronholm PF, et al. Health-related quality of life in ANCA-associated vasculitis and item generation for a disease-specific patient-reported outcome measure. Patient Relat Outcome Meas. 2018;9:17-34doi: 10.2147/PROM.S144992.
Robson, J. C., Dawson, J., Cronholm, P. F., Milman, N., Kellom, K. S., Ashdown, S., Easley, E., Farrar, J. T., Gebhart, D., Lanier, G., McAlear, C. A., Peck, J., Luqmani, R. A., Shea, J. A., Tomasson, G., & Merkel, P. A. (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, 917-34. https://doi.org/10.2147/PROM.S144992
Robson, Joanna C, et al. "Health-related quality of life in ANCA-associated vasculitis and item generation for a disease-specific patient-reported outcome measure." Patient related outcome measures vol. 9 (2018): 17-34. doi: https://doi.org/10.2147/PROM.S144992
Robson JC, Dawson J, Cronholm PF, Milman N, Kellom KS, Ashdown S, Easley E, Farrar JT, Gebhart D, Lanier G, McAlear CA, Peck J, Luqmani RA, Shea JA, Tomasson G, Merkel PA. Health-related quality of life in ANCA-associated vasculitis and item generation for a disease-specific patient-reported outcome measure. Patient Relat Outcome Meas. 2018 Jan 04;9:17-34. doi: 10.2147/PROM.S144992. eCollection 2018. PMID: 29379322; PMCID: PMC5759851.
Copy Download .nbib Format: NLM
Share it on

Patient Relat Outcome Meas. 2018 Jan 04;9:17-34. doi: 10.2147/PROM.S144992. eCollection 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

Joanna C Robson, Jill Dawson, Peter F Cronholm, Nataliya Milman, Katherine S Kellom, Susan Ashdown, Ebony Easley, John T Farrar, Don Gebhart, Georgia Lanier, Carol A McAlear, Jacqueline Peck, Raashid A Luqmani, Judy A Shea, Gunnar Tomasson, Peter A Merkel

Affiliations

  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.

PMID: 29379322 PMCID: PMC5759851 DOI: 10.2147/PROM.S144992

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.

Keywords: ANCA-associated vasculitis; eosinophilic granulomatosis with polyangiitis; granuloma-tosis with polyangiitis; microscopic polyangiitis; patient-reported outcomes; quality of life

Conflict of interest statement

Disclosure Dr Robson and Professor Luqmani were supported in part by the National Institute for Health Research Musculoskeletal Biomedical Research Unit, Oxford, UK. Dr Robson was supported by a Natio

References

  1. QJM. 2016 Dec;109 (12 ):803-809 - PubMed
  2. Psychol Health. 2013;28(2):171-88 - PubMed
  3. J Rheumatol. 2015 Nov;42(11):2204-9 - PubMed
  4. N Engl J Med. 2014 Nov 6;371(19):1771-80 - PubMed
  5. Arthritis Rheum. 2009 Feb 15;61(2):259-65 - PubMed
  6. Arthritis Rheum. 2012 Feb;64(2):542-8 - PubMed
  7. Rheumatology (Oxford). 2010 Jul;49(7):1383-90 - PubMed
  8. Arthritis Rheum. 2003 Dec 15;49(6):826-37 - PubMed
  9. Ann Rheum Dis. 2014 Jan;73(1):207-11 - PubMed
  10. Arthritis Rheum. 2013 Jan;65(1):1-11 - PubMed
  11. BMJ. 2000 Jan 8;320(7227):114-6 - PubMed
  12. QJM. 1994 Nov;87(11):671-8 - PubMed
  13. Arthritis Care Res (Hoboken). 2012 Feb;64(2):273-9 - PubMed
  14. Ann Rheum Dis. 2015 Jan;74(1):177-84 - PubMed
  15. Arthritis Rheumatol. 2016 Mar;68(3):690-701 - PubMed
  16. J Rheumatol. 2011 Jul;38(7):1480-6 - PubMed
  17. Health Qual Life Outcomes. 2016 Mar 01;14:33 - PubMed
  18. Value Health. 2005 Mar-Apr;8(2):94-104 - PubMed
  19. N Engl J Med. 2010 Jul 15;363(3):211-20 - PubMed
  20. Med Care. 1992 Jun;30(6):473-83 - PubMed
  21. N Engl J Med. 2010 Jul 15;363(3):221-32 - PubMed
  22. Ann Rheum Dis. 2009 Dec;68(12):1827-32 - PubMed
  23. Nephrol Dial Transplant. 2013 Feb;28(2):373-9 - PubMed
  24. Lancet. 2015 Mar 28;385(9974):1206-18 - PubMed
  25. Clin Exp Rheumatol. 2017 Mar-Apr;35 Suppl 103(1):40-46 - PubMed
  26. Arthritis Rheum. 1998 Dec;41(12):2257-62 - PubMed
  27. Ann Rheum Dis. 2016 Sep;75(9):1583-94 - PubMed
  28. J Gerontol B Psychol Sci Soc Sci. 2008 Nov;63(6):S385-93 - PubMed
  29. J Adv Nurs. 2003 Apr;42(1):57-63 - PubMed
  30. Arthritis Rheumatol. 2016 Jul;68(7):1711-20 - PubMed
  31. Arthritis Care Res (Hoboken). 2011 Jul;63(7):1055-61 - PubMed
  32. J Rheumatol. 2005 Nov;32(11):2250-6 - PubMed
  33. J Rheumatol. 2014 Mar;41(3):593-8 - PubMed
  34. Ann Rheum Dis. 2011 Mar;70(3):488-94 - PubMed
  35. Rheumatology (Oxford). 2014 May;53(5):953-6 - PubMed
  36. Arthritis Care Res (Hoboken). 2010 Nov;62(11):1639-45 - PubMed
  37. Arthritis Rheum. 2002 Apr 15;47(2):196-201 - PubMed
  38. Expert Rev Pharmacoecon Outcomes Res. 2010 Jun;10(3):269-81 - PubMed
  39. Health Qual Life Outcomes. 2006 Oct 11;4:79 - PubMed

Publication Types

Grant support