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

Research output: Contribution to journalJournal articleResearchpeer-review

  • 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 Friðriksdóttir
  • Ioannis Gioulbasanis
  • Eva Hammerlid
  • Mieke van Hemelrijck
  • Silke Hermann
  • Olga Husson
  • Michael Jefford (Member of author collaboration)
  • Johansen, Christoffer (Member of author collaboration)
  • Colin Johnson (Member of author collaboration)
  • Trille Kristina Kjaer (Member of author collaboration)
  • Meropi Kontogianni (Member of author collaboration)
  • Pernilla Lagergren (Member of author collaboration)
  • Emma Lidington (Member of author collaboration)
  • Karolina Lisy (Member of author collaboration)
  • Ofir Morag (Member of author collaboration)
  • Andy Nordin (Member of author collaboration)
  • Amal S.H. Al Omari (Member of author collaboration)
  • Andrea Pace (Member of author collaboration)
  • Silvia De Padova (Member of author collaboration)
  • Duska Petranoviæ (Member of author collaboration)
  • Monica Pinto (Member of author collaboration)
  • John Ramage (Member of author collaboration)
  • Elke Rammant (Member of author collaboration)
  • Jaap Reijneveld (Member of author collaboration)
  • Samantha Serpentini (Member of author collaboration)
  • Sam Sodergren (Member of author collaboration)
  • Vassilios Vassiliou (Member of author collaboration)
  • Irma Verdonck-de Leeuw (Member of author collaboration)
  • Ingvild Vistad (Member of author collaboration)
  • Neil K. Aaronson (Member of author collaboration)
  • Lonneke V. van de Poll-Franse (Member of author collaboration)
  • EORTC survivorship questionnaire development group
  • on behalf of the EORTC QLG

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.

Original languageEnglish
Article number1111–1130
JournalJournal of Cancer Survivorship
Volume17
ISSN1932-2259
DOIs
Publication statusPublished - 2023

Bibliographical note

Publisher Copyright:
© 2022, The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.

    Research areas

  • Cancer survivor, Disease-free, Health-related quality of life, Oncology, Patient reported outcomes, Survivorship questionnaire

ID: 346737148