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

Arthritis Care Res (Hoboken). 2020 Sep;72(9):1331-1338. doi: 10.1002/acr.24019.


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 of patient-reported outcomes primarily served to monitor their own disease, to save money, or to gather data for research purposes; 2) inclusion of patient-reported outcomes in the consultation, encompassing patients' expectations of active use of the patient-reported outcomes data 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) addressing patient-reported outcomes to the individual's challenges, reflecting the need for a more individualized approach; and 5) possibilities for improvement in the use of patient-reported outcomes, referring to patients' ideas for the future use of patient-reported outcomes.

Conclusion: Information and dialogue regarding the purpose of patient-reported outcomes collection, how to respond to PROMs correctly, and inclusion of the patient-reported outcomes data in the consultation are of importance to patients with inflammatory arthritis who routinely complete patient-reported outcomes.

Publication types

  • Multicenter Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Ambulatory Care*
  • Arthritis, Psoriatic / drug therapy
  • Arthritis, Rheumatoid / drug therapy
  • Attitude*
  • Communication*
  • Female
  • Focus Groups
  • Humans
  • Male
  • Middle Aged
  • Patient Reported Outcome Measures*
  • Qualitative Research
  • Rheumatology
  • Spondylarthritis / drug therapy