Objective: This study aimed to expand the understanding of the patient with psoriatic arthritis (PsA) experience and to compare/contrast patient and clinician prioritization of PsA dimensions.
Methods: We conducted four patients with PsA focus groups across three US rheumatology practices using mixed methods to identify attributes of PsA important to patients. Combination with extant attributes of PsA identified by a steering committee created a comprehensive list of attributes. In separate patient and physician Delphi exercises, participants distributed 100 points across items on the list according to importance as a dimension of PsA.
Results: Fifty-one items describing PsA were generated. Thirty-eight patients and 13 clinicians completed the last Delphi rating exercise. Patients distributed points across a wider range of items than physicians. Using group mean score per item, prioritization was compared between groups. Items with the top 10 mean scores for both groups included arthritis, disease activity, pain, fatigue, physical function, and spine symptoms. Other prioritized domains showed disparity: access to care, daily activities, stiffness, future health uncertainty, and sleep quality for patients versus specific disease skin and joint manifestations, comorbidities, structural damage, and disease management goals for clinicians.
Conclusion: Although concordance between patient and clinician perspectives regarding "what matters" in PsA was seen, significant areas of discordance were uncovered. Patients highlighted concerns about care access and uncertainty about the future and impact on aspects of life beyond physical symptoms, issues not usually discussed in a clinical visit. These differential prioritizations highlight opportunities for improvement in patient-clinician communications and delineate the need for more patient-centered research.
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http://dx.doi.org/10.1002/acr2.11781 | DOI Listing |
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