Understanding the quality of life (QOL) issues in survivors of cancer: Towards the development of an EORTC QOL cancer survivorship questionnaire

Marieke van Leeuwen, Olga Husson, Paola Alberti, Juan Ignacio Arraras, Olivier L. Chinot, Anna Costantini, Anne Sophie Darlington, Linda Dirven, Martin Eichler, Eva B. Hammerlid, Bernhard Holzner, Colin D. Johnson, Meropi Kontogianni, Trille Kristina Kjær, Ofir Morag, Sandra Nolte, Andrew Nordin, Andrea Pace, Monica Pinto, Katja PolzJohn Ramage, Jaap C. Reijneveld, Samantha Serpentini, Krzysztof A. Tomaszewski, Vassilios Vassiliou, Irma M. Verdonck-de Leeuw, Ingvild Vistad, Teresa E. Young, Neil K. Aaronson, Lonneke V. van de Poll-Franse

Research output: Contribution to journalArticle

Abstract

Backround: The number of cancer survivors is growing steadily and increasingly, clinical trials are being designed to include long-term follow-up to assess not only survival, but also late effects and health-related quality of life (HRQOL). Therefore it is is essential to develop patient-reported outcome measures (PROMs) that capture the full range of issues relevant to disease-free cancer survivors. The objectives of this project are: 1) to develop a European Organisation for Research and Treatment of Cancer (EORTC) questionnaire that captures the full range of physical, mental and social HRQOL issues relevant to disease-free cancer survivors; and 2) to determine at which minimal time since completion of treatment the questionnaire should be used. Methods: We reviewed 134 publications on cancer survivorship and interviewed 117 disease-free cancer survivors with 11 different types of cancer across 14 countries in Europe to generate an exhaustive, provisional list of HRQOL issues relevant to cancer survivors. The resulting issue list, the EORTC core questionnaire (QLQ-C30), and site-specific questionnaire modules were completed by a second group of 458 survivors. Results: We identified 116 generic survivorship issues. These issues covered body image, cognitive functioning, health behaviors, negative and positive outlook, health distress, mental health, fatigue, sleep problems, physical functioning, pain, several physical symptoms, social functioning, and sexual problems. Patients rated most of the acute symptoms of cancer and its treatment (e.g. nausea) as no longer relevant approximately one year after completion of treatment. Conclusions: Compared to existing cancer survivorship questionnaires, our findings underscore the relevance of assessing issues related to chronic physical side effects of treatment such as neuropathy and joint pain. We will further develop a core survivorship questionnaire and three site-specific modules for disease-free adult cancer survivors who are at least one year post-treatment.

Original languageEnglish
Article number114
JournalHealth and Quality of Life Outcomes
Volume16
Issue number1
DOIs
Publication statusPublished - Jun 4 2018

Keywords

  • Cancer survivor
  • Disease-free
  • Health- related quality of life
  • Oncology
  • Survivorship questionnaire

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

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    van Leeuwen, M., Husson, O., Alberti, P., Arraras, J. I., Chinot, O. L., Costantini, A., Darlington, A. S., Dirven, L., Eichler, M., Hammerlid, E. B., Holzner, B., Johnson, C. D., Kontogianni, M., Kjær, T. K., Morag, O., Nolte, S., Nordin, A., Pace, A., Pinto, M., ... van de Poll-Franse, L. V. (2018). Understanding the quality of life (QOL) issues in survivors of cancer: Towards the development of an EORTC QOL cancer survivorship questionnaire. Health and Quality of Life Outcomes, 16(1), [114]. https://doi.org/10.1186/s12955-018-0920-0