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Published in:

27-01-2022

Phase III study of the European Organisation for Research and Treatment of Cancer Quality of Life cancer survivorship core questionnaire

Authors: Marieke van Leeuwen, Jacobien M. Kieffer, Teresa E. Young, Maria Antonietta Annunziata, Volker Arndt, Juan Ignacio Arraras, Didier Autran, Hira Bani Hani, Manas Chakrabarti, Olivier Chinot, Juhee Cho, Rene Aloisio da Costa Vieira, Anne-Sophie Darlington, Philip R. Debruyne, Linda Dirven, Daniela Doege, Yannick Eller, Martin Eichler, Nanna Fridriksdottir, Ioannis Gioulbasanis, Eva Hammerlid, Mieke van Hemelrijck, Silke Hermann, Olga Husson, Michael Jefford, Christoffer Johansen, Trille Kristina Kjaer, Meropi Kontogianni, Pernilla Lagergren, Emma Lidington, Karolina Lisy, Ofir Morag, Andy Nordin, Amal S.H. Al Omari, Andrea Pace, Silvia De Padova, Duska Petranovia, Monica Pinto, John Ramage, Elke Rammant, Jaap Reijneveld, Samantha Serpentini, Sam Sodergren, Vassilios Vassiliou, Irma Verdonck-de Leeuw, Ingvild Vistad, Teresa Young, Neil K. Aaronson, Lonneke V. van de Poll-Franse, on behalf of the EORTC QLG

Published in: Journal of Cancer Survivorship | Issue 4/2023

Abstract

Purpose

The purpose of this study is to develop a European Organisation for Research and Treatment of Cancer Quality of Life Group (EORTC QLG) questionnaire that captures the full range of physical, mental, and social health-related quality of life (HRQOL) issues relevant to disease-free cancer survivors. In this phase III study, we pretested the provisional core questionnaire (QLQ-SURV111) and aimed to identify essential and optional scales.

Methods

We pretested the QLQ-SURV111 in 492 cancer survivors from 17 countries with one of 11 cancer diagnoses. We applied the EORTC QLG decision rules and employed factor analysis and item response theory (IRT) analysis to assess and, where necessary, modify the hypothesized questionnaire scales. We calculated correlations between the survivorship scales and the QLQ-C30 summary score and carried out a Delphi survey among healthcare professionals, patient representatives, and cancer researchers to distinguish between essential and optional scales.

Results

Fifty-four percent of the sample was male, mean age was 60 years, and, on average, time since completion of treatment was 3.8 years. Eleven items were excluded, resulting in the QLQ-SURV100, with 12 functional and 9 symptom scales, a symptom checklist, 4 single items, and 10 conditional items. The essential survivorship scales consist of 73 items.

Conclusions

The QLQ-SURV100 has been developed to assess comprehensively the HRQOL of disease-free cancer survivors. It includes essential and optional scales and will be validated further in an international phase IV study.

Implications for Cancer Survivors

The availability of this questionnaire will facilitate a standardized and robust assessment of the HRQOL of disease-free cancer survivors.

Available only for authorised users

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Title: Phase III study of the European Organisation for Research and Treatment of Cancer Quality of Life cancer survivorship core questionnaire
Authors: Marieke van Leeuwen
Jacobien M. Kieffer
Teresa E. Young
Maria Antonietta Annunziata
Volker Arndt
Juan Ignacio Arraras
Didier Autran
Hira Bani Hani
Manas Chakrabarti
Olivier Chinot
Juhee Cho
Rene Aloisio da Costa Vieira
Anne-Sophie Darlington
Philip R. Debruyne
Linda Dirven
Daniela Doege
Yannick Eller
Martin Eichler
Nanna Fridriksdottir
Ioannis Gioulbasanis
Eva Hammerlid
Mieke van Hemelrijck
Silke Hermann
Olga Husson
Michael Jefford
Christoffer Johansen
Trille Kristina Kjaer
Meropi Kontogianni
Pernilla Lagergren
Emma Lidington
Karolina Lisy
Ofir Morag
Andy Nordin
Amal S.H. Al Omari
Andrea Pace
Silvia De Padova
Duska Petranovia
Monica Pinto
John Ramage
Elke Rammant
Jaap Reijneveld
Samantha Serpentini
Sam Sodergren
Vassilios Vassiliou
Irma Verdonck-de Leeuw
Ingvild Vistad
Teresa Young
Neil K. Aaronson
Lonneke V. van de Poll-Franse
on behalf of the EORTC QLG
Publication date: 27-01-2022
Publisher: Springer US
Published in: Journal of Cancer Survivorship / Issue 4/2023
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI: https://doi.org/10.1007/s11764-021-01160-1

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