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Abstract Number: 1165

“What Matters”: Patient and Clinician Perspectives in Psoriatic Arthritis Care

Philip Mease1, Dan Furst2, Evan Siegel3, Vibeke Strand4, Melissa Mcilraith5, Elaine Husni6 and M. Cameron Hay7, 1Swedish Medical Center/Providence St. Joseph Health and University of Washington, Seattle, WA, 2University of California Los Angeles, Los Angeles, CA, 3Arthritis and Rheumatism Associates, Potomac, MD, 4Stanford University School of Medicine, Portola Valley, CA, 5M.Mc. Consulting, Dallas, TX, 6Cleveland Clinic, Cleveland, OH, 7Miami University (Ohio), Oxford, OH

Meeting: ACR Convergence 2021

Keywords: functional status, health status, Patient reported outcomes, Psoriatic arthritis, quality of care

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Session Information

Date: Monday, November 8, 2021

Title: Patient Outcomes, Preferences, & Attitudes Poster III: Patient Preferences (1153–1169)

Session Type: Poster Session C

Session Time: 8:30AM-10:30AM

Background/Purpose: Recent psoriatic arthritis (PsA) treatment recommendations (1), highlight the importance of shared decision making; this ideally requires the clinician understands “what matters” to each patient regarding their disease. Concurrently, patient research partners have been incorporated into projects for the OMERACT core domain set (2) and measures of physical function and (health related) quality of life (3). However, less is known about the similarities and differences between patient and clinician perspectives regarding “what matters” in routine clinical care.

Methods: A comprehensive list of items describing the PsA patient experience was generated in medical anthropologist-designed (CH) peer-to-peer discussions in 4 patient focus groups across the United States (Seattle, Cleveland, Washington, DC). These items were combined with those from the GRAPPA-OMERACT PsA Outcomes patient-physician consensus project (2). A PsA physician and patient steering committee reviewed and revised the list with additional topics considered to be of importance. The final list of 51 items went through a 3 round Delphi process starting with 53 PsA patients and a 2 round Delphi with 13 PsA expert rheumatologists. In each round, participants rated each item for level of importance out of 100 total points.

Results: Top priority items for each group are depicted in Figure 1. Both patients and physicians rated ‘Arthritis -Joint pain and swelling’ in the top two. Five additional items were included for both groups but with different scores; all related to disease manifestations or physical consequences. 10 items received disparate priority between groups. In this set, patients included two unique items: access to care and future health uncertainty. Other items affecting everyday function were noted. Physician priorities included specific disease manifestations and physical/functional outcomes, and the topic of “disease management goals”, focusing on patient-physician communication regarding a treatment plan.

Conclusion: Patients and physicians were in consensus that arthritis disease activity, pain and fatigue are key features of the patient’s experience of PsA. Differences appeared in other domains; physicians ranked clinical domains such as enthesitis, dactylitis, and skin disease more highly, patients considered items such as access to care, future health uncertainty and sleep quality to be most important. This study highlights the need for physicians to ask and address “what matters” with patients and to educate patients about potential differences in physicians’ areas of concern to optimize shared decision making.

1. Ogdie A , Coates LC, Gladman D. Treatment guidelines in psoriatic arthritis: Rheumatology 2020;59:i37-i46

2. Orbai A-M, de Wit M, Mease P, et al. International patient and physician consensus on a psoriatic arthritis core outcome set for clinical trials Ann Rheum Dis 2017;76:673–680.

3. Gossec L, de Wit M, Kiltz U, et al. A patient-derived and patient-reported outcome measure for assessing psoriatic arthritis: elaboration and preliminary validation of the Psoriatic Arthritis Impact of Disease (PsAID) questionnaire, a 13-country EULAR initiative. Ann Rheum Dis 2014;73: 1012–9.


Disclosures: P. Mease, AbbVie, 2, 5, 6, Amgen, 2, 5, 6, Bristol-Myers Squibb, 2, 5, Eli Lilly, 2, 5, 6, Galapagos, 2, 5, Celgene, 2, Boehringer Ingelheim, 2, Genentech, 2, 5, 6, Janssen, 2, 5, 6, Gilead Sciences, 2, 5, 6, Novartis, 2, 5, 6, Pfizer, 2, 5, 6, Sun Pharma, 2, 5, UCB Pharma, 2, 6, GSK, 2; D. Furst, Actelion, 2, 5, Amgen, 2, 5, BMS, 2, 5, Corbus, 2, 6, Galapagos, 2, 5, GSK, 6, Sanofi, 2, 5, 6, Roche/Genentech, 5, National Institutes of Health, 5, Novartis, 2, 5, Pfizer, 2, 5; E. Siegel, BMS, 2, Abbvie, 2, 6, Jannsen, 2, 6, Eli Lilly, 2, 6, Novartis, 2, 6, UCB, 2, 6; V. Strand, Abbvie, 2, Amgen, 2, Genentech / Roche, 2, Janssen, 2, Novartis, 2, Pfizer, 2, Sanofi, 2, UCB, 2, Bristol-Myers Squibb, 2, Boehringer Ingelheim, 2, Celltrion, 2, Arena, 2, Gilead, 2, GlaxoSmithKline, 2, Ichnos, 2, Inmedix, 2, Kiniksa, 2, Merck, 2, Myriad Genetics, 2, Regeneron Pharmaceuticals, Inc., 2, Samsung, 2, Sandoz, 2, Setpoint, 2, Galapagos, 2, Horizon, 2, Lilly, 2, Rheos, 2, R-Pharma, 2, Scipher, 2, Sun Pharma, 2; M. Mcilraith, None; E. Husni, AbbVie, 2, Amgen, 2, Janssen, 2, Novartis, 2, Eli Lilly, 2, UCB, 2, Regeneron, 2; M. Hay, Novartis, 5, Novartis, 5.

To cite this abstract in AMA style:

Mease P, Furst D, Siegel E, Strand V, Mcilraith M, Husni E, Hay M. “What Matters”: Patient and Clinician Perspectives in Psoriatic Arthritis Care [abstract]. Arthritis Rheumatol. 2021; 73 (suppl 9). https://acrabstracts.org/abstract/what-matters-patient-and-clinician-perspectives-in-psoriatic-arthritis-care/. Accessed .
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