TY - JOUR
T1 - Flexibility in patient-reported outcome and health-related quality of life measurement
T2 - The EORTC Quality of Life Group measurement strategy
AU - Piccinin, Claire
AU - Aaronson, Neil K.
AU - Bjordal, Kristin
AU - Coens, Corneel
AU - Darlington, Anne Sophie
AU - Efficace, Fabio
AU - Fitzsimmons, Deborah
AU - Giesinger, Johannes M.
AU - Gilbert, Alexandra
AU - Holzner, Bernhard
AU - Kuliś, Dagmara
AU - Nolte, Sandra
AU - Pe, Madeline
AU - Petersen, Morten Aa
AU - Reijneveld, Jaap C.
AU - Singer, Susanne
AU - Sprangers, Mirjam A.G.
AU - Taphoorn, Martin J.B.
AU - Tomaszewski, Krzysztof A.
AU - van de Poll-Franse, Lonneke
AU - Velikova, Galina
AU - Wheelwright, Sally
AU - Groenvold, Mogens
AU - on behalf of the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group
N1 - Publisher Copyright:
© 2025 The Authors
PY - 2025/5/2
Y1 - 2025/5/2
N2 - 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.
AB - 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.
KW - Clinical trials
KW - Health-related quality of life
KW - Patient-reported outcome measures
KW - Patient-reported outcomes
KW - Self-report
KW - Symptom monitoring
UR - https://www.scopus.com/pages/publications/105001854856
U2 - 10.1016/j.ejca.2025.115392
DO - 10.1016/j.ejca.2025.115392
M3 - Article
C2 - 40194468
AN - SCOPUS:105001854856
SN - 0959-8049
VL - 220
JO - European Journal of Cancer
JF - European Journal of Cancer
M1 - 115392
ER -