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Rigshospitalet - a part of Copenhagen University Hospital
E-pub ahead of print

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

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OBJECTIVE: To explore the patients' views of the collection and use of patient-reported outcomes (PROs) as part of routine care in patients with Inflammatory arthritis (IA).

METHODS: We conducted a qualitative focus group study based on interviews in each of the five 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. Mean age 60 (range 32-80). Five themes were derived from the analysis: Need for information about why the data are collected, reflecting patients' uncertainty as to whether the collection of PROs primarily served to monitor their own disease, to save money or to gather data for research purposes; Inclusion of PROs in the consultation, encompassing patients' expectations of active use of the PRO data during talks with rheumatologists or nurses; Reflections on how to respond the PROMs to obtain high quality data, referring to patients' concerns about how to respond "correctly" and issues that could affect their responses; PROs should address the individual's challenges, reflecting the need for a more individualized approach; and Possibilities for improvement in the use of PROs, referring to patients' ideas for the future use of PROs.

CONCLUSION: Information and dialogue regarding the purpose of PRO collection, how to respond to PROMs correctly and inclusion of the PRO data in the consultation are of importance to patients with IA who routinely complete PROs. This article is protected by copyright. All rights reserved.

Original languageEnglish
JournalArthritis Care & Research
Publication statusE-pub ahead of print - 29 Jun 2019

ID: 57510610