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

COVID-19 PROM Patient-reported outcome measure Quality of life Questionnaire Symptoms

Journal

Journal of patient-reported outcomes
ISSN: 2509-8020
Titre abrégé: J Patient Rep Outcomes
Pays: Germany
ID NLM: 101722688

Informations de publication

Date de publication:
26 Mar 2022
Historique:
received: 01 10 2021
accepted: 08 03 2022
entrez: 29 3 2022
pubmed: 30 3 2022
medline: 30 3 2022
Statut: epublish

Résumé

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. 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. 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. 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).

Sections du résumé

BACKGROUND 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 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 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 CONCLUSIONS
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).

Identifiants

pubmed: 35348945
doi: 10.1186/s41687-022-00434-1
pii: 10.1186/s41687-022-00434-1
pmc: PMC8962286
doi:

Types de publication

Journal Article

Langues

eng

Pagination

26

Informations de copyright

© 2022. The Author(s).

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Auteurs

Cecilie Delphin Amdal (CD)

Research Support Services, Oslo University Hospital, Sogn Arena, Nydalen, Post Box 4950, 0424, Oslo, Norway. cecia@ous-hf.no.
Department of Oncology, Oslo University Hospital, Oslo, Norway. cecia@ous-hf.no.

Katherine Taylor (K)

Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), University Medical Centre of Johannes Gutenberg University, Mainz, Germany.

Dagmara Kuliś (D)

Quality of Life Department, EORTC, Brussels, Belgium.

Ragnhild Sørum Falk (RS)

Research Support Services, Oslo University Hospital, Sogn Arena, Nydalen, Post Box 4950, 0424, Oslo, Norway.

Andrew Bottomley (A)

Quality of Life Department, EORTC, Brussels, Belgium.

Juan Ignacio Arraras (JI)

Servicio de Navarro de Salud, Pamplona, Spain.

James Harold Barte (JH)

University of the East Ramon Magsaysay Memorial Medical Center, Quezon City, Philippines.

Anne Sophie Darlington (AS)

School of Health Sciences, University of Southampton, Southampton, UK.

Kristin Hofsø (K)

Division of Emergencies and Critical Care, Oslo University Hospital, Oslo, Norway.
Lovisenberg Diaconal University College, Oslo, Norway.

Bernard Holzner (B)

Innsbruck Medical University, Innsbruck, Austria.

Nina Marie Høyning Jørgensen (NMH)

Medical Library at Oslo University Hospital, University of Oslo Library, Oslo, Norway.

Melissa Paulita Mariano (MP)

University of the East Ramon Magsaysay Memorial Medical Center, Quezon City, Philippines.

Madeline Pe (M)

Quality of Life Department, EORTC, Brussels, Belgium.

Claire Piccinin (C)

Quality of Life Department, EORTC, Brussels, Belgium.

Nicola Riccetti (N)

Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), University Medical Centre of Johannes Gutenberg University, Mainz, Germany.
Azienda Unità Sanitaria Locale (USL) Umbria N.2, Terni, Italy.

Melanie Schranz (M)

Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), University Medical Centre of Johannes Gutenberg University, Mainz, Germany.

Sally Wheelwright (S)

Health Sciences, University of Southampton, Southampton, UK.

Kristin Bjordal (K)

Research Support Services, Oslo University Hospital, Sogn Arena, Nydalen, Post Box 4950, 0424, Oslo, Norway.
Faculty of Medicine, University of Oslo, Oslo, Norway.

Classifications MeSH