Patient Involvement in Outcome Measures for Psoriatic Arthritis
Psoriatic arthritis (PsA) is a heterogeneous inflammatory arthritis with a varied clinical phenotype. There has been considerable international collaboration over recent years to develop and prioritise appropriate disease domains and outcome measures to capture all aspects of this complex disease. It has been recognised that patient-reported measures and physician assessments are complementary and, when used together, allow an improved reflection of disease burden. Taking this concept one step further, the experience in rheumatoid arthritis has demonstrated benefits of incorporating the patient perspective in the development of outcome measures. We report a systematic review demonstrating (1) that there has been little incorporation of the patient perspective in the development of outcome measures and domains in PsA, (2) the proceedings from the preliminary patient involvement in outcome measures for PsA (PIOMPSA) meetings, and (3) a proposed roadmap for improving patient involvement.
KeywordsPsoriatic arthritis Outcome measures Assessment Disease activity Patient-reported outcomes Patient involvement PIOMPSA OMERACT
Compliance with Ethics Guidelines
Conflict of Interest
Meetings were supported through unrestricted educational grants from Pfizer and Abbvie Laboratories.
Laure Gossec received EULAR funding for the PsAID study.
Ade Adebajo, Mel Brooke, Willemina Campbell, Laura C. Coates, Oliver FitzGerald, Philip Helliwell, Sarah Hewlett, Jana James, Patricia Minnock, Aisling Reast, William Tillett, Dennis O’Sullivan, Maarten de Wit, and Neil McHugh declare that they have no conflict of interest.
Human and Animal Rights and Informed Consent
This article does not contain any studies with human or animal subjects performed by any of the authors.
Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance
- 1.Mease PJ. Measures of psoriatic arthritis: Tender and Swollen Joint Assessment, Psoriasis Area and Severity Index (PASI), Nail Psoriasis Severity Index (NAPSI), Modified Nail Psoriasis Severity Index (mNAPSI), Mander/Newcastle Enthesitis Index (MEI), Leeds Enthesitis Index (LEI), Spondyloarthritis Research Consortium of Canada (SPARCC), Maastricht Ankylosing Spondylitis Enthesis Score (MASES), Leeds Dactylitis Index (LDI), Patient Global for Psoriatic Arthritis, Dermatology Life Quality Index (DLQI), Psoriatic Arthritis Quality of Life (PsAQOL), Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F), Psoriatic Arthritis Response Criteria (PsARC), Psoriatic Arthritis Joint Activity Index (PsAJAI), Disease Activity in Psoriatic Arthritis (DAPSA), and Composite Psoriatic Disease Activity Index (CPDAI). Arthritis Care Res. 2011;63 Suppl 11:S64–85.CrossRefGoogle Scholar
- 4.•Palominos PE, Gaujoux-Viala C, Fautrel B, et al. Clinical outcomes in psoriatic arthritis: a systematic literature review. Arthritis Care Res. 2012;64(3):397–406. A systematic review demonstrating great heterogeneity in the reporting of outcomes in PsA clinical trials and the need for consensus on the reporting of PsA domains. CrossRefGoogle Scholar
- 11.de Wit M, Abma T, Koelewijn-van Loon M, et al. Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences. BMJ. 2013;3(5). doi: 10.1136/bmjopen-2012-002241.
- 12.••de Wit MP, Berlo SE, Aanerud GJ, et al. European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects. Ann Rheum Dis. 2011;70(5):722–6. The EULAR recommendations for incorporating the patients’ perspective in scientific research developed by patient partners, rheumatologists and allied health professionals. PubMedCrossRefGoogle Scholar
- 14.NIHR. Briefing notes for researchers: public involvement in NHS, public health and social care research. Eastleigh: Involve; 2012.Google Scholar
- 18.••Gossec LDWM, Heiberg T, Maccarone M, Balanescu A, Balint P, Dora Niedermayer D, et al. Elaboration and preliminary validation of the Psoriatic Arthritis Impact of Disease (PsAID) questionnaire. A 13-country EULAR initiative with involvement of patient research partners from each country. Madrid: EULAR; 2013. p. OP0111. The development and preliminary validation of the PsA impact of disease (PsAID) project. This novel measure has been developed in close collaboration with patient partners.Google Scholar
- 21.•Bingham 3rd CO, Alten R, de Wit MP. The importance of patient participation in measuring rheumatoid arthritis flares. Ann Rheum Dis. 2012;71(7):1107–9. An editorial concisely describing the rational and evidence for incorporating the patient perspective in measuring rheumatoid arthritis flares. PubMedCrossRefGoogle Scholar
- 23.Pincus T, Swearingen C, Wolfe F. Toward a multidimensional Health Assessment Questionnaire (MDHAQ): assessment of advanced activities of daily living and psychological status in the patient-friendly health assessment questionnaire format. Arthritis Rheum. 1999;42(10):2220–30.PubMedCrossRefGoogle Scholar
- 29.Brodszky V, Pentek M, Balint PV, et al. Comparison of the Psoriatic Arthritis Quality of Life (PsAQoL) questionnaire, the functional status (HAQ) and utility (EQ-5D) measures in psoriatic arthritis: results from a cross-sectional survey. Scand J Rheumatol. 2010;39(4):303–9.PubMedCrossRefGoogle Scholar
- 35.Taylor WJ, McPherson KM. Using Rasch analysis to compare the psychometric properties of the Short Form 36 physical function score and the Health Assessment Questionnaire disability index in patients with psoriatic arthritis and rheumatoid arthritis. Arthritis Rheum. 2007;57(5):723–9.PubMedCrossRefGoogle Scholar