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Flexibility in patient-reported outcome and health-related quality of life measurement: The EORTC Quality of Life Group measurement strategy

Claire Piccinin Orcid Logo, Neil K. Aaronson, Kristin Bjordal, Corneel Coens, Anne-Sophie Darlington, Fabio Efficace, Deborah Fitzsimmons Orcid Logo, Johannes M. Giesinger, Alexandra Gilbert Orcid Logo, Bernhard Holzner, Dagmara Kuliś Orcid Logo, Sandra Nolte Orcid Logo, Madeline Pe Orcid Logo, Morten Aa. Petersen Orcid Logo, Jaap C. Reijneveld Orcid Logo, Susanne Singer Orcid Logo, Mirjam A.G. Sprangers Orcid Logo, Martin J.B. Taphoorn, Krzysztof A. Tomaszewski Orcid Logo, Lonneke van de Poll-Franse Orcid Logo, Galina Velikova Orcid Logo, Sally Wheelwright Orcid Logo, Mogens Groenvold

European Journal of Cancer, Volume: 220, Start page: 115392

Swansea University Author: Deborah Fitzsimmons Orcid Logo

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DOI (Published version): 10.1016/j.ejca.2025.115392

Abstract

The development of the first European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group (QLG) health-related quality of life (HRQoL) questionnaires contributed to the systematic uptake of HRQoL as an endpoint in cancer clinical trials, and to the measurement of HRQoL fo...

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Published in: European Journal of Cancer
ISSN: 0959-8049 1879-0852
Published: Elsevier Ltd 2025
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URI: https://cronfa.swan.ac.uk/Record/cronfa69259
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Following a modular approach, these patient-reported outcome (PRO) measures (PROMs) ensure that both generic and disease-specific issues are assessed, enabling comparison of PROs across groups and studies. The application of a comprehensive and continually refined methodology for developing and updating these PROMs has been crucial in supporting their psychometric and cross-cultural validity, and their continued implementation in clinical research. However, the advancement of measurement science, the more widespread implementation of PROMs, and the significant evolution of anti-cancer therapies over the last decades have highlighted the need to adopt more flexible approaches to PRO assessment to ensure that PROMs remain relevant and fit-for-purpose. 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spelling 2025-04-10T13:09:20.8430306 v2 69259 2025-04-10 Flexibility in patient-reported outcome and health-related quality of life measurement: The EORTC Quality of Life Group measurement strategy e900d99a0977beccf607233b10c66b43 0000-0002-7286-8410 Deborah Fitzsimmons Deborah Fitzsimmons true false 2025-04-10 HSOC The development of the first European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group (QLG) health-related quality of life (HRQoL) questionnaires contributed to the systematic uptake of HRQoL as an endpoint in cancer clinical trials, and to the measurement of HRQoL for individual assessment in routine care. Following a modular approach, these patient-reported outcome (PRO) measures (PROMs) ensure that both generic and disease-specific issues are assessed, enabling comparison of PROs across groups and studies. The application of a comprehensive and continually refined methodology for developing and updating these PROMs has been crucial in supporting their psychometric and cross-cultural validity, and their continued implementation in clinical research. However, the advancement of measurement science, the more widespread implementation of PROMs, and the significant evolution of anti-cancer therapies over the last decades have highlighted the need to adopt more flexible approaches to PRO assessment to ensure that PROMs remain relevant and fit-for-purpose. The QLG has responded to this call by implementing more tailored PRO measurement approaches through the development and release of the computerised adaptive test (CAT) version of the EORTC QLQ-C30 (i.e., the EORTC CAT Core) and the EORTC Item Library. The EORTC Item Library is an interactive online platform that allows for the creation of customised questionnaires (item lists) from the pool of available items derived from established EORTC QLG PROMs. The aim of this article is to describe the current EORTC QLG approach to PRO measurement in oncology, covering important historical developments and best practice recommendations. Journal Article European Journal of Cancer 220 115392 Elsevier Ltd 0959-8049 1879-0852 Health-related quality of life; Patient-reported outcomes; Patient-reported outcome measures; Self-report; Clinical trials; Symptom monitoring 2 5 2025 2025-05-02 10.1016/j.ejca.2025.115392 COLLEGE NANME Health and Social Care School COLLEGE CODE HSOC Swansea University Another institution paid the OA fee 2025-04-10T13:09:20.8430306 2025-04-10T13:02:27.5090235 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Public Health Claire Piccinin 0000-0002-3918-1174 1 Neil K. Aaronson 2 Kristin Bjordal 3 Corneel Coens 4 Anne-Sophie Darlington 5 Fabio Efficace 6 Deborah Fitzsimmons 0000-0002-7286-8410 7 Johannes M. Giesinger 8 Alexandra Gilbert 0000-0002-9142-1227 9 Bernhard Holzner 10 Dagmara Kuliś 0000-0002-2289-2113 11 Sandra Nolte 0000-0001-6185-9423 12 Madeline Pe 0009-0005-2531-0050 13 Morten Aa. Petersen 0000-0002-3117-632X 14 Jaap C. Reijneveld 0000-0002-2257-3147 15 Susanne Singer 0000-0001-5784-7964 16 Mirjam A.G. Sprangers 0000-0002-3728-6933 17 Martin J.B. Taphoorn 18 Krzysztof A. Tomaszewski 0000-0001-5077-6948 19 Lonneke van de Poll-Franse 0000-0003-0413-6872 20 Galina Velikova 0000-0003-1899-5942 21 Sally Wheelwright 0000-0003-0657-2483 22 Mogens Groenvold 23 69259__33991__cf1d6978c57d4f78be0a4aaa691d377a.pdf 69259.VOR.pdf 2025-04-10T13:07:02.3872786 Output 1509378 application/pdf Version of Record true © 2025 The Authors. This is an open access article distributed under the terms of the Creative Commons CC-BY license. true eng http://creativecommons.org/licenses/by/4.0/
title Flexibility in patient-reported outcome and health-related quality of life measurement: The EORTC Quality of Life Group measurement strategy
spellingShingle Flexibility in patient-reported outcome and health-related quality of life measurement: The EORTC Quality of Life Group measurement strategy
Deborah Fitzsimmons
title_short Flexibility in patient-reported outcome and health-related quality of life measurement: The EORTC Quality of Life Group measurement strategy
title_full Flexibility in patient-reported outcome and health-related quality of life measurement: The EORTC Quality of Life Group measurement strategy
title_fullStr Flexibility in patient-reported outcome and health-related quality of life measurement: The EORTC Quality of Life Group measurement strategy
title_full_unstemmed Flexibility in patient-reported outcome and health-related quality of life measurement: The EORTC Quality of Life Group measurement strategy
title_sort Flexibility in patient-reported outcome and health-related quality of life measurement: The EORTC Quality of Life Group measurement strategy
author_id_str_mv e900d99a0977beccf607233b10c66b43
author_id_fullname_str_mv e900d99a0977beccf607233b10c66b43_***_Deborah Fitzsimmons
author Deborah Fitzsimmons
author2 Claire Piccinin
Neil K. Aaronson
Kristin Bjordal
Corneel Coens
Anne-Sophie Darlington
Fabio Efficace
Deborah Fitzsimmons
Johannes M. Giesinger
Alexandra Gilbert
Bernhard Holzner
Dagmara Kuliś
Sandra Nolte
Madeline Pe
Morten Aa. Petersen
Jaap C. Reijneveld
Susanne Singer
Mirjam A.G. Sprangers
Martin J.B. Taphoorn
Krzysztof A. Tomaszewski
Lonneke van de Poll-Franse
Galina Velikova
Sally Wheelwright
Mogens Groenvold
format Journal article
container_title European Journal of Cancer
container_volume 220
container_start_page 115392
publishDate 2025
institution Swansea University
issn 0959-8049
1879-0852
doi_str_mv 10.1016/j.ejca.2025.115392
publisher Elsevier Ltd
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str School of Health and Social Care - Public Health{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Health and Social Care - Public Health
document_store_str 1
active_str 0
description The development of the first European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group (QLG) health-related quality of life (HRQoL) questionnaires contributed to the systematic uptake of HRQoL as an endpoint in cancer clinical trials, and to the measurement of HRQoL for individual assessment in routine care. Following a modular approach, these patient-reported outcome (PRO) measures (PROMs) ensure that both generic and disease-specific issues are assessed, enabling comparison of PROs across groups and studies. The application of a comprehensive and continually refined methodology for developing and updating these PROMs has been crucial in supporting their psychometric and cross-cultural validity, and their continued implementation in clinical research. However, the advancement of measurement science, the more widespread implementation of PROMs, and the significant evolution of anti-cancer therapies over the last decades have highlighted the need to adopt more flexible approaches to PRO assessment to ensure that PROMs remain relevant and fit-for-purpose. The QLG has responded to this call by implementing more tailored PRO measurement approaches through the development and release of the computerised adaptive test (CAT) version of the EORTC QLQ-C30 (i.e., the EORTC CAT Core) and the EORTC Item Library. The EORTC Item Library is an interactive online platform that allows for the creation of customised questionnaires (item lists) from the pool of available items derived from established EORTC QLG PROMs. The aim of this article is to describe the current EORTC QLG approach to PRO measurement in oncology, covering important historical developments and best practice recommendations.
published_date 2025-05-02T05:27:42Z
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