Patients' Views on Routine Collection of Patient-Reported Outcomes in Rheumatology Outpatient Care: A Multicenter Focus Group Study

Objective To explore the patients' views of the collection and use of patient-reported outcomes as part of routine care in patients with inflammatory arthritis. Methods We conducted a qualitative focus group study based on interviews in each of the 5 geographical regions of Denmark. The analysis was based on content analysis. Four patient research partners were involved in the study. Results In total, 32 adult patients (21 female) with rheumatoid arthritis (n = 21), psoriatic arthritis (n = 6), and axial spondyloarthritis (n = 5) participated. The mean age was 60 years (range 32-80 years). Five themes were derived from the analysis: 1) a need for information about why the data are collected, reflecting patients' uncertainty as to whether the collection ofpatient-reported outcomesprimarily served to monitor their own disease, to save money, or to gather data for research purposes; 2) inclusion ofpatient-reported outcomesin the consultation, encompassing patients' expectations of active use of thepatient-reported outcomesdata during talks with rheumatologists or nurses; 3) reflections on how to respond to the patient-reported outcome measures (PROMs) to obtain high quality data, referring to patients' concerns about how to respond "correctly" and about issues that could affect their responses; 4) addressingpatient-reported outcomesto the individual's challenges, reflecting the need for a more individualized approach; and 5) possibilities for improvement in the use ofpatient-reported outcomes, referring to patients' ideas for the future use ofpatient-reported outcomes. Conclusion Information and dialogue regarding the purpose ofpatient-reported outcomescollection, how to respond toPROMs correctly, and inclusion of thepatient-reported outcomesdata in the consultation are of importance to patients with inflammatory arthritis who routinely completepatient-reported outcomes.