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

Jette Primdahl, Dorte V Jensen, Rikke H Meincke, Kim V Jensen, Connie Ziegler, Stig W Nielsen, Lillian Dalsgaard, Malene Kildemand, Merete L Hetland, Bente A Esbensen

Research output: Contribution to journalJournal articleResearchpeer-review

Abstract

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
ISSN2151-464X
DOIs
Publication statusE-pub ahead of print - 29. Jun 2019

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Rheumatology
Focus Groups
Referral and Consultation
Psoriatic Arthritis
Denmark
Research
Uncertainty
Nurses
Interviews

Cite this

Primdahl, Jette ; Jensen, Dorte V ; Meincke, Rikke H ; Jensen, Kim V ; Ziegler, Connie ; Nielsen, Stig W ; Dalsgaard, Lillian ; Kildemand, Malene ; Hetland, Merete L ; Esbensen, Bente A. / Patients' views on routine collection of patient-reported outcomes in rheumatology outpatient care - a multicenter focus group study. In: Arthritis Care & Research. 2019.
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abstract = "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.",
author = "Jette Primdahl and Jensen, {Dorte V} and Meincke, {Rikke H} and Jensen, {Kim V} and Connie Ziegler and Nielsen, {Stig W} and Lillian Dalsgaard and Malene Kildemand and Hetland, {Merete L} and Esbensen, {Bente A}",
note = "This article is protected by copyright. All rights reserved.",
year = "2019",
month = "6",
day = "29",
doi = "10.1002/acr.24019",
language = "English",
journal = "Arthritis Care & Research",
issn = "2151-464X",
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Patients' views on routine collection of patient-reported outcomes in rheumatology outpatient care - a multicenter focus group study. / Primdahl, Jette; Jensen, Dorte V; Meincke, Rikke H; Jensen, Kim V; Ziegler, Connie; Nielsen, Stig W; Dalsgaard, Lillian; Kildemand, Malene; Hetland, Merete L; Esbensen, Bente A.

In: Arthritis Care & Research, 29.06.2019.

Research output: Contribution to journalJournal articleResearchpeer-review

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

N1 - This article is protected by copyright. All rights reserved.

PY - 2019/6/29

Y1 - 2019/6/29

N2 - 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.

AB - 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.

U2 - 10.1002/acr.24019

DO - 10.1002/acr.24019

M3 - Journal article

C2 - 31254452

JO - Arthritis Care & Research

JF - Arthritis Care & Research

SN - 2151-464X

ER -