Patients' views on routine collection of patient-reported outcomes in rheumatology outpatient care - a multicenter focus group study

TY - JOUR

T1 - Patients' views on routine collection of patient-reported outcomes in rheumatology outpatient care - a multicenter focus group study

AU - Primdahl, Jette

AU - Jensen, Dorte V.

AU - Meincke, Rikke H.

AU - Jensen, Kim V.

AU - Ziegler, Connie

AU - Nielsen, Stig W

AU - Dalsgaard, Lillian

AU - Kildemand, Malene

AU - Hetland, Merete L.

AU - Esbensen, Bente A

PY - 2020/9/1

Y1 - 2020/9/1

N2 - 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.

AB - 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.

U2 - 10.1002/acr.24019

DO - 10.1002/acr.24019

M3 - Journal article

C2 - 31254452

SN - 2151-464X

JO - Arthritis Care & Research

JF - Arthritis Care & Research

ER -