Research
Print page Print page
Switch language
Rigshospitalet - a part of Copenhagen University Hospital
Published

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

Research output: Contribution to journalJournal articleResearchpeer-review

Harvard

APA

CBE

MLA

Vancouver

Author

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. 2020 ; Vol. 72, No. 9. pp. 1331-1338.

Bibtex

@article{c89c9e9ff514478cbb8ceddf56edc18d,
title = "Patients' Views on Routine Collection of Patient-Reported Outcomes in Rheumatology Outpatient Care: A Multicenter Focus Group Study",
abstract = "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.",
keywords = "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",
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 = "COPECARE",
year = "2020",
month = sep,
doi = "10.1002/acr.24019",
language = "English",
volume = "72",
pages = "1331--1338",
journal = "Arthritis Care & Research",
issn = "2151-464X",
publisher = "JohnWiley & Sons, Inc",
number = "9",

}

RIS

TY - JOUR

T1 - Patients' Views on Routine Collection of Patient-Reported Outcomes in Rheumatology Outpatient Care

T2 - 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 - COPECARE

PY - 2020/9

Y1 - 2020/9

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.

KW - Adult

KW - Aged

KW - Aged, 80 and over

KW - Ambulatory Care

KW - Arthritis, Psoriatic/drug therapy

KW - Arthritis, Rheumatoid/drug therapy

KW - Attitude

KW - Communication

KW - Female

KW - Focus Groups

KW - Humans

KW - Male

KW - Middle Aged

KW - Patient Reported Outcome Measures

KW - Qualitative Research

KW - Rheumatology

KW - Spondylarthritis/drug therapy

U2 - 10.1002/acr.24019

DO - 10.1002/acr.24019

M3 - Journal article

C2 - 31254452

VL - 72

SP - 1331

EP - 1338

JO - Arthritis Care & Research

JF - Arthritis Care & Research

SN - 2151-464X

IS - 9

ER -

ID: 61791124