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Health-related quality of life in patients with COVID-19; international development of a patient-reported outcome measure

Health-related quality of life in patients with COVID-19; international development of a patient-reported outcome measure
Health-related quality of life in patients with COVID-19; international development of a patient-reported outcome measure

Background: We aimed to create a questionnaire to assess the health-related quality of life including functioning, symptoms, and general health status of adult patients with current or previous COVID-19. Here, we report on Phase I and II of the development. Methods: Internationally recognized methodology for questionnaire development was followed. In Phase I, a comprehensive literature review was performed to identify relevant COVID-19 issues. Decisions for inclusion, exclusion, and data extraction were completed independently in teams of two and then compared. The resulting issues were discussed with health care professionals (HCPs) and current and former COVID-19 patients. The input of HCPs and patients was carefully considered, and the list of issues updated. In Phase II, this updated list was operationalized into items/questions. Results: The literature review yielded 3342 publications, 339 of which were selected for full-text review, and 75 issues were identified. Discussions with 44 HCPs from seven countries and 52 patients from six countries showed that psychological symptoms, worries, and reduced functioning lasted the longest for patients, and there were considerable discrepancies between HCPs and patients concerning the importance of some of the symptoms. The final list included 73 issues, which were operationalized into an 80-item questionnaire. Conclusion: The resulting COVID-19 questionnaire covers health–related quality of life issues relevant to COVID-19 patients and is available in several languages. The next steps include testing of the applicability and patients’ acceptability of the questionnaire (Phase IIIA) and preliminary psychometric testing (Phase IIIB).

COVID-19, PROM, Patient-reported outcome measure, Quality of life, Questionnaire, Symptoms
Amdal, Cecilie Delphin
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Taylor, Katherine
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Kuliś, Dagmara
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Falk, Ragnhild Sørum
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Bottomley, Andrew
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Arraras, Juan Ignacio
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Barte, James Harold
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Darlington, Anne Sophie
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Hofsø, Kristin
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Holzner, Bernard
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Jørgensen, Nina Marie Høyning
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Mariano, Melissa Paulita
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Pe, Madeline
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Piccinin, Claire
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Riccetti, Nicola
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Schranz, Melanie
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Wheelwright, Sally
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Bjordal, Kristin
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Amdal, Cecilie Delphin
48300972-b106-4471-8450-5fe4250a9376
Taylor, Katherine
76eb8a09-d29e-4dff-803d-5ae6763697a9
Kuliś, Dagmara
deaca519-4adf-4d72-b86e-c6eb8b81ba53
Falk, Ragnhild Sørum
7f1c0388-2020-4afd-8111-833858ef6c48
Bottomley, Andrew
0143e689-1361-437b-840d-ff6a651b53df
Arraras, Juan Ignacio
cfd50eba-4987-4fda-9069-36dccffa87d2
Barte, James Harold
da8d3968-b58f-4c23-86a5-f613726c1a31
Darlington, Anne Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Hofsø, Kristin
da458840-4159-48be-b4f2-35308d89efe2
Holzner, Bernard
4b925a9a-aaa2-4721-969c-f5340b7daff0
Jørgensen, Nina Marie Høyning
1b57cc3a-390d-4099-9df1-c41badd94bd1
Mariano, Melissa Paulita
f9327671-41c3-404a-b702-90746d85c424
Pe, Madeline
f8974edd-ce99-4dd1-aef2-917866cba650
Piccinin, Claire
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Riccetti, Nicola
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Schranz, Melanie
86527e86-8b63-454a-931d-a9528f6d413b
Wheelwright, Sally
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Bjordal, Kristin
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Amdal, Cecilie Delphin, Taylor, Katherine, Kuliś, Dagmara, Falk, Ragnhild Sørum, Bottomley, Andrew, Arraras, Juan Ignacio, Barte, James Harold, Darlington, Anne Sophie, Hofsø, Kristin, Holzner, Bernard, Jørgensen, Nina Marie Høyning, Mariano, Melissa Paulita, Pe, Madeline, Piccinin, Claire, Riccetti, Nicola, Schranz, Melanie, Wheelwright, Sally and Bjordal, Kristin (2022) Health-related quality of life in patients with COVID-19; international development of a patient-reported outcome measure. Journal of Patient-Reported Outcomes, 6 (1), [26]. (doi:10.1186/s41687-022-00434-1).

Record type: Article

Abstract

Background: We aimed to create a questionnaire to assess the health-related quality of life including functioning, symptoms, and general health status of adult patients with current or previous COVID-19. Here, we report on Phase I and II of the development. Methods: Internationally recognized methodology for questionnaire development was followed. In Phase I, a comprehensive literature review was performed to identify relevant COVID-19 issues. Decisions for inclusion, exclusion, and data extraction were completed independently in teams of two and then compared. The resulting issues were discussed with health care professionals (HCPs) and current and former COVID-19 patients. The input of HCPs and patients was carefully considered, and the list of issues updated. In Phase II, this updated list was operationalized into items/questions. Results: The literature review yielded 3342 publications, 339 of which were selected for full-text review, and 75 issues were identified. Discussions with 44 HCPs from seven countries and 52 patients from six countries showed that psychological symptoms, worries, and reduced functioning lasted the longest for patients, and there were considerable discrepancies between HCPs and patients concerning the importance of some of the symptoms. The final list included 73 issues, which were operationalized into an 80-item questionnaire. Conclusion: The resulting COVID-19 questionnaire covers health–related quality of life issues relevant to COVID-19 patients and is available in several languages. The next steps include testing of the applicability and patients’ acceptability of the questionnaire (Phase IIIA) and preliminary psychometric testing (Phase IIIB).

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Health-related quality of life in patients with COVID-19 - Accepted Manuscript
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More information

Accepted/In Press date: 8 March 2022
Published date: 26 March 2022
Additional Information: © 2022. The Author(s).
Keywords: COVID-19, PROM, Patient-reported outcome measure, Quality of life, Questionnaire, Symptoms

Identifiers

Local EPrints ID: 468052
URI: http://eprints.soton.ac.uk/id/eprint/468052
PURE UUID: acb8b62e-4229-464f-90be-8d5e31827bf1
ORCID for Sally Wheelwright: ORCID iD orcid.org/0000-0003-0657-2483

Catalogue record

Date deposited: 28 Jul 2022 18:51
Last modified: 29 Jul 2022 01:45

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Contributors

Author: Cecilie Delphin Amdal
Author: Katherine Taylor
Author: Dagmara Kuliś
Author: Ragnhild Sørum Falk
Author: Andrew Bottomley
Author: Juan Ignacio Arraras
Author: James Harold Barte
Author: Kristin Hofsø
Author: Bernard Holzner
Author: Nina Marie Høyning Jørgensen
Author: Melissa Paulita Mariano
Author: Madeline Pe
Author: Claire Piccinin
Author: Nicola Riccetti
Author: Melanie Schranz
Author: Kristin Bjordal

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