Background 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). Currently, less is known about the similarities and differences between patient and clinician perspectives.
Objectives To interrogate and deliniate commonalities and discrepancies in “what matters” to patients and to physicians 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. Several 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.
References Ogdie A, Coates LC, Gladman D. Treatment guidelines in psoriatic arthritis: Rheumatology 2020;59:i37-i46
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.
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.
Disclosure of Interests Philip J Mease Speakers bureau: AbbVie, Amgen, Eli Lilly, Genentech, Janssen, Pfizer, Novartis, UCB, Consultant of: AbbVie, Amgen, BMS, Eli Lilly, Galapagos, Celgene, Boehringer Ingelheim, Genetech, Novartis, Janssen, Pfizer, Sun Pharma, UCB, GSK, Grant/research support from: AbbVie, Amgen, BMS, Eli Lilly, Galapagos, Genetech, Novartis, Janssen, Sun Pharma, Pfizer, Daniel Furst Speakers bureau: Corbus, GSK, Sanofi, Consultant of: Actelion, Amgen, BMS, Corbus, Galapagos, Sanofi, Novartis, Pfizer, Grant/research support from: Actelion, Amgen, BMS, Galapagos, Sanofi, Roche/Genetech, Novartis, Pfizer, Evan Siegel Speakers bureau: AbbVie, Janssen, UCB, Novartis, Lilly, Consultant of: AbbVie, Janssen, UCB, Novartis, Lilly, BMS, Vibeke Strand Consultant of: Abbvie Amgen Corporation Arena
AstraZeneca, Bayer, Bioventus, BMS, Boehringer Ingelheim, Celltrion, Chemocentryx, Elsa, EMD Serono, Endo, Equilium, Flexion, Galapagos, Genentech / Roche, Gilead, GSK, Horizon, Ichnos, Inmedix, Janssen, Kiniksa, Kypha, Lilly, Merck, MiMedx, Novartis, Pfizer, Regeneron, Rheos, R-Pharma, Samsung, Sandoz, Sanofi, Scipher, Servier, Setpoint, Sorrento, Spherix, Sun Pharma, Swing, UCB, Melissa Mcilraith Employee of: Past employee at Abbott and Celgene, M Elaine Husni Consultant of: AbbVie, Amgen, Janssen, Novartis, Eli Lilly, UCB, Regeneron, M. Cameron Hay Grant/research support from: Novartis for this IIS
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