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Patient Involvement in Outcome Measures for Psoriatic Arthritis

  • PSORIATIC ARTHRITIS (O FITZGERALD AND P HELLIWELL, SECTION EDITORS)
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Abstract

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.

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References

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  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.

    Article  Google Scholar 

  2. Gladman DD, Mease PJ, Strand V, et al. Consensus on a core set of domains for psoriatic arthritis. J Rheumatol. 2007;34(5):1167–70.

    PubMed  Google Scholar 

  3. Taylor WJ. Preliminary identification of core domains for outcome studies in psoriatic arthritis using Delphi methods. Ann Rheum Dis. 2005;64 Suppl 2:ii110–2.

    PubMed Central  PubMed  Google 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.

    Article  Google Scholar 

  5. Berkanovic E, Hurwicz ML, Lachenbruch PA. Concordant and discrepant views of patients’ physical functioning. Arthritis Care Res Official J Arthritis Health Prof Assoc. 1995;8(2):94–101.

    Article  CAS  Google Scholar 

  6. Studenic P, Radner H, Smolen JS, et al. Discrepancies between patients and physicians in their perceptions of rheumatoid arthritis disease activity. Arthritis Rheum. 2012;64(9):2814–23.

    Article  PubMed  Google Scholar 

  7. Dandorfer SW, Rech J, Manger B, et al. Differences in the patient’s and the physician’s perspective of disease in psoriatic arthritis. Semin Arthritis Rheum. 2012;42(1):32–41. A study demonstrating the discrepancies between physician and patient perspectives of PsA.

    Article  PubMed  Google Scholar 

  8. Gladman DD. Consensus exercise on domains in psoriatic arthritis. Ann Rheum Dis. 2005;64 Suppl 2:ii113–4.

    PubMed Central  PubMed  Google Scholar 

  9. Kirwan JR, Fries JF, Hewlett SE, et al. Patient perspective workshop: moving towards OMERACT guidelines for choosing or developing instruments to measure patient-reported outcomes. J Rheumatol. 2011;38(8):1711–5.

    Article  PubMed  Google Scholar 

  10. Kirwan JR, Fries JF, Hewlett S, et al. Patient perspective: choosing or developing instruments. J Rheumatol. 2011;38(8):1716–9.

    Article  PubMed  Google 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.

    Article  PubMed  Google Scholar 

  13. Kirwan JR, Hewlett SE, Heiberg T, et al. Incorporating the patient perspective into outcome assessment in rheumatoid arthritis–progress at OMERACT 7. J Rheumatol. 2005;32(11):2250–6.

    PubMed  Google Scholar 

  14. NIHR. Briefing notes for researchers: public involvement in NHS, public health and social care research. Eastleigh: Involve; 2012.

  15. McKenna SP, Doward LC, Whalley D, et al. Development of the PsAQoL: a quality of life instrument specific to psoriatic arthritis. Ann Rheum Dis. 2004;63(2):162–9.

    Article  PubMed Central  PubMed  CAS  Google Scholar 

  16. Stamm TA, Nell V, Mathis M, et al. Concepts important to patients with psoriatic arthritis are not adequately covered by standard measures of functioning. Arthritis Rheum. 2007;57(3):487–94.

    Article  PubMed  Google Scholar 

  17. MacKenzie H, Thavaneswaran A, Chandran V, et al. Patient-reported outcome in psoriatic arthritis: a comparison of Web-based versus paper-completed questionnaires. J Rheumatol. 2011;38(12):2619–24.

    Article  PubMed  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 

  19. Hewlett S, Sanderson T, May J, et al. ‘I’m hurting, I want to kill myself’: rheumatoid arthritis flare is more than a high joint count–an international patient perspective on flare where medical help is sought. Rheumatology (Oxford). 2012;51(1):69–76.

    Article  Google Scholar 

  20. Healy PJ, Helliwell PS. Measuring dactylitis in clinical trials: which is the best instrument to use? J Rheumatol. 2007;34(6):1302–6.

    PubMed  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.

    Article  PubMed  Google Scholar 

  22. Blackmore MG, Gladman DD, Husted J, et al. Measuring health status in psoriatic arthritis: the Health Assessment Questionnaire and its modification. J Rheumatol. 1995;22(5):886–93.

    PubMed  CAS  Google 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.

    Article  PubMed  CAS  Google Scholar 

  24. Husted JA, Gladman DD, Farewell VT, et al. Health-related quality of life of patients with psoriatic arthritis: a comparison with patients with rheumatoid arthritis. Arthritis Rheum. 2001;45(2):151–8.

    Article  PubMed  CAS  Google Scholar 

  25. Husted JA, Gladman DD, Long JA, et al. A modified version of the Health Assessment Questionnaire (HAQ) for psoriatic arthritis. Clin Exp Rheumatol. 1995;13(4):439–43.

    PubMed  CAS  Google Scholar 

  26. Husted JA, Tom BD, Farewell VT, et al. Description and prediction of physical functional disability in psoriatic arthritis: a longitudinal analysis using a Markov model approach. Arthritis Rheum. 2005;53(3):404–9.

    Article  PubMed  Google Scholar 

  27. Husted JA, Tom BD, Farewell VT, et al. A longitudinal study of the effect of disease activity and clinical damage on physical function over the course of psoriatic arthritis: does the effect change over time? Arthritis Rheum. 2007;56(3):840–9.

    Article  PubMed  Google Scholar 

  28. Leung YY, Tam LS, Kun EW, et al. Comparison of 4 functional indexes in psoriatic arthritis with axial or peripheral disease subgroups using Rasch analyses. J Rheumatol. 2008;35(8):1613–21.

    PubMed  Google 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.

    Article  PubMed  CAS  Google Scholar 

  30. Mease PJ, Woolley JM, Bitman B, et al. Minimally important difference of Health Assessment Questionnaire in psoriatic arthritis: relating thresholds of improvement in functional ability to patient-rated importance and satisfaction. J Rheumatol. 2011;38(11):2461–5.

    Article  PubMed  Google Scholar 

  31. Kwok T, Pope JE. Minimally important difference for patient-reported outcomes in psoriatic arthritis: Health Assessment Questionnaire and pain, fatigue, and global visual analog scales. J Rheumatol. 2010;37(5):1024–8.

    Article  PubMed  Google Scholar 

  32. Wolfe F, Michaud K, Pincus T. Development and validation of the health assessment questionnaire II: a revised version of the health assessment questionnaire. Arthritis Rheum. 2004;50(10):3296–305.

    Article  PubMed  Google Scholar 

  33. Daltroy LH, Larson MG, Roberts NW, et al. A modification of the Health Assessment Questionnaire for the spondyloarthropathies. J Rheumatol. 1990;17(7):946–50.

    PubMed  CAS  Google Scholar 

  34. Husted JA, Gladman DD, Farewell VT, et al. Validating the SF-36 health survey questionnaire in patients with psoriatic arthritis. J Rheumatol. 1997;24(3):511–7.

    PubMed  CAS  Google 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.

    Article  PubMed  Google Scholar 

  36. Leung YY, Ho KW, Zhu TY, et al. Testing scaling assumptions, reliability and validity of medical outcomes study short-form 36 health survey in psoriatic arthritis. Rheumatology (Oxford). 2010;49(8):1495–501.

    Article  Google Scholar 

  37. Kvamme MK, Kristiansen IS, Lie E, et al. Identification of cutpoints for acceptable health status and important improvement in patient-reported outcomes, in rheumatoid arthritis, psoriatic arthritis, and ankylosing spondylitis. J Rheumatol. 2010;37(1):26–31.

    Article  PubMed  Google Scholar 

  38. Shikiar R, Willian MK, Okun MM, et al. The validity and responsiveness of three quality of life measures in the assessment of psoriasis patients: results of a phase II study. Health Qual Life Outcomes. 2006;4:71.

    Article  PubMed Central  PubMed  Google Scholar 

  39. Husted J, Gladman DD, Farewell VT, et al. Validation of the revised and expanded version of the Arthritis Impact Measurement Scales for patients with psoriatic Arthritis. J Rheumatol. 1996;23(6):1015–9.

    PubMed  CAS  Google Scholar 

  40. Husted J, Gladman DD, Long JA, et al. Relationship of the Arthritis Impact Measurement Scales to changes in articular status and functional performance in patients with psoriatic arthritis. J Rheumatol. 1996;23(11):1932–7.

    PubMed  CAS  Google Scholar 

  41. Duffy CM, Watanabe Duffy KN, Gladman DD, et al. The utility of the arthritis impact measurement scales for patients with psoriatic arthritis. J Rheumatol. 1992;19(11):1727–32.

    PubMed  CAS  Google Scholar 

  42. Sokoll KB, Helliwell PS. Comparison of disability and quality of life in rheumatoid and psoriatic arthritis. J Rheumatol. 2001;28(8):1842–6.

    PubMed  CAS  Google Scholar 

  43. Singh JA, Strand V. Health care utilization in patients with spondyloarthropathies. Rheumatology (Oxford). 2009;48(3):272–6.

    Article  CAS  Google Scholar 

  44. Healy PJ, Helliwell PS. Psoriatic arthritis quality of life instrument: an assessment of sensitivity and response to change. J Rheumatol. 2008;35(7):1359–61.

    PubMed  Google Scholar 

  45. Nichol MB, Margolies JE, Lippa E, et al. The application of multiple quality-of-life instruments in individuals with mild-to-moderate psoriasis. PharmacoEconomics. 1996;10(6):644–53.

    Article  PubMed  CAS  Google Scholar 

  46. Cauli A, Gladman DD, Mathieu A, et al. Patient global assessment in psoriatic arthritis: a multicenter GRAPPA and OMERACT study. J Rheumatol. 2011;38(5):898–903.

    Article  PubMed  Google Scholar 

  47. Leung YY, Ho KW, Zhu TY, et al. Construct validity of the modified numeric rating scale of patient global assessment in psoriatic arthritis. J Rheumatol. 2012;39(4):844–8.

    Article  PubMed  Google Scholar 

  48. Gladman DD, Inman RD, Cook RJ, et al. International spondyloarthritis interobserver reliability exercise–the INSPIRE study: II. Assessment of peripheral joints, enthesitis, and dactylitis. J Rheumatol. 2007;34(8):1740–5.

    PubMed  Google Scholar 

  49. Fredriksson T, Pettersson U. Severe psoriasis–oral therapy with a new retinoid. Dermatologica. 1978;157(4):238–44.

    Article  PubMed  CAS  Google Scholar 

  50. Louden BA, Pearce DJ, Lang W, et al. A Simplified Psoriasis Area Severity Index (SPASI) for rating psoriasis severity in clinic patients. Dermatol Online J. 2004;10(2):7.

    PubMed  Google Scholar 

  51. Feldman SR, Fleischer Jr AB, Reboussin DM, et al. The self-administered psoriasis area and severity index is valid and reliable. J Invest Dermatol. 1996;106(1):183–6.

    Article  PubMed  CAS  Google Scholar 

  52. Carlin CS, Feldman SR, Krueger JG, et al. A 50 % reduction in the Psoriasis Area and Severity Index (PASI 50) is a clinically significant endpoint in the assessment of psoriasis. J Am Acad Dermatol. 2004;50(6):859–66.

    Article  PubMed  Google Scholar 

  53. Healy PJ, Helliwell PS. Measuring clinical enthesitis in psoriatic arthritis: assessment of existing measures and development of an instrument specific to psoriatic arthritis. Arthritis Rheum. 2008;59(5):686–91.

    Article  PubMed  Google Scholar 

  54. Maksymowych WP, Mallon C, Morrow S, et al. Development and validation of the Spondyloarthritis Research Consortium of Canada (SPARCC) Enthesitis Index. Ann Rheum Dis. 2009;68(6):948–53.

    Article  PubMed  CAS  Google Scholar 

  55. Gladman DD, Inman RD, Cook RJ, et al. International spondyloarthritis interobserver reliability exercise–the INSPIRE study: I. Assessment of spinal measures. J Rheumatol. 2007;34(8):1733–9.

    PubMed  Google Scholar 

  56. Helliwell PS, Firth J, Ibrahim GH, et al. Development of an assessment tool for dactylitis in patients with psoriatic arthritis. J Rheumatol. 2005;32(9):1745–50.

    PubMed  Google Scholar 

  57. Leung YY, Ho KW, Tam LS, et al. Evaluation of spinal mobility measurements in predicting axial psoriatic arthritis. Clin Rheumatol. 2011;30(9):1157–62.

    Article  PubMed  Google Scholar 

  58. Fernandez-Sueiro JL, Willisch A, Pertega-Diaz S, et al. Evaluation of ankylosing spondylitis spinal mobility measurements in the assessment of spinal involvement in psoriatic arthritis. Arthritis Rheum. 2009;61(3):386–92.

    Article  PubMed  Google Scholar 

  59. Taylor WJ, Harrison AA. Could the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) be a valid measure of disease activity in patients with psoriatic arthritis? Arthritis Rheum. 2004;51(3):311–5.

    Article  PubMed  Google Scholar 

  60. Fernandez-Sueiro JL, Willisch A, Pertega-Diaz S, et al. Validity of the bath ankylosing spondylitis disease activity index for the evaluation of disease activity in axial psoriatic arthritis. Arthritis Care Res. 2010;62(1):78–85.

    Article  Google Scholar 

  61. Eder L, Chandran V, Shen H, et al. Is ASDAS better than BASDAI as a measure of disease activity in axial psoriatic arthritis? Ann Rheum Dis. 2010;69(12):2160–4.

    Article  PubMed  Google Scholar 

  62. Rich P, Scher RK. Nail Psoriasis Severity Index: a useful tool for evaluation of nail psoriasis. J Am Acad Dermatol. 2003;49(2):206–12.

    Article  PubMed  Google Scholar 

  63. Aktan S, Ilknur T, Akin C, et al. Interobserver reliability of the Nail Psoriasis Severity Index. Clin Exp Dermatol. 2007;32(2):141–4.

    Article  PubMed  CAS  Google Scholar 

  64. Cassell SE, Bieber JD, Rich P, et al. The modified Nail Psoriasis Severity Index: validation of an instrument to assess psoriatic nail involvement in patients with psoriatic arthritis. J Rheumatol. 2007;34(1):123–9.

    PubMed  Google Scholar 

  65. Maejima H, Taniguchi T, Watarai A, et al. Evaluation of nail disease in psoriatic arthritis by using a modified nail psoriasis severity score index. Int J Dermatol. 2010;49(8):901–6.

    Article  PubMed  Google Scholar 

  66. Gladman DD, Strand V, Mease PJ, et al. OMERACT 7 psoriatic arthritis workshop: synopsis. Ann Rheum Dis. 2005;64 Suppl 2:ii115–6.

    PubMed Central  PubMed  Google Scholar 

  67. Mumtaz A, Gallagher P, Kirby B, et al. Development of a preliminary composite disease activity index in psoriatic arthritis. Ann Rheum Dis. 2011;70(2):272–7.

    Article  PubMed  Google Scholar 

  68. FitzGerald O, Helliwell P, Mease P, et al. Application of composite disease activity scores in psoriatic arthritis to the PRESTA data set. Ann Rheum Dis. 2012;71(3):358–62.

    Article  PubMed  Google Scholar 

  69. Nell-Duxneuner VP, Stamm TA, Machold KP, et al. Evaluation of the appropriateness of composite disease activity measures for assessment of psoriatic arthritis. Ann Rheum Dis. 2010;69(3):546–9.

    Article  PubMed  Google Scholar 

  70. Schoels M, Aletaha D, Funovits J, et al. Application of the DAREA/DAPSA score for assessment of disease activity in psoriatic arthritis. Ann Rheum Dis. 2010;69(8):1441–7.

    Article  PubMed  Google Scholar 

  71. Coates LC, Fransen J, Helliwell PS. Defining minimal disease activity in psoriatic arthritis: a proposed objective target for treatment. Ann Rheum Dis. 2010;69(1):48–53.

    Article  PubMed  CAS  Google Scholar 

  72. Coates LC, Cook R, Lee KA, et al. Frequency, predictors, and prognosis of sustained minimal disease activity in an observational psoriatic arthritis cohort. Arthritis Care Res. 2010;62(7):970–6.

    Article  Google Scholar 

  73. Coates LC, Helliwell PS. Validation of minimal disease activity criteria for psoriatic arthritis using interventional trial data. Arthritis Care Res. 2010;62(7):965–9.

    Article  Google Scholar 

  74. Gladman DD, Tom BD, Mease PJ, et al. Informing response criteria for psoriatic arthritis. I: discrimination models based on data from 3 anti-tumor necrosis factor randomized studies. J Rheumatol. 2010;37(9):1892–7.

    Article  PubMed  Google Scholar 

  75. Gladman DD, Tom BD, Mease PJ, et al. Informing response criteria for psoriatic arthritis (PsA). II: further considerations and a proposal–the PsA joint activity index. J Rheumatol. 2010;37(12):2559–65.

    Article  PubMed  Google Scholar 

  76. Helliwell PS, Fitzgerald O, Fransen J, et al. The development of candidate composite disease activity and responder indices for psoriatic arthritis (GRACE project). Ann Rheum Dis. 2013;72(6):986–91.

    Article  PubMed  Google Scholar 

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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.

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This article does not contain any studies with human or animal subjects performed by any of the authors.

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Correspondence to William Tillett.

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This article is part of the Topical Collection on Psoriatic Arthritis

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Tillett, W., Adebajo, A., Brooke, M. et al. Patient Involvement in Outcome Measures for Psoriatic Arthritis. Curr Rheumatol Rep 16, 418 (2014). https://doi.org/10.1007/s11926-014-0418-7

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