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

van Leeuwen, Marieke, Husson, Olga, Alberti, Paola, Arraras, Juan Ignacio, Chinot, Olivier L, Costantini, Anna, Darlington, Anne-Sophie, Dirven, Linda, Eichler, Martin, Hammerlid, Eva B, Holzner, Bernhard, Johnson, Colin D, Kontogianni, Meropi, Kjær, Trille Kristina, Morag, Ofir, Nolte, Sandra, Nordin, Andrew, Pace, Andrea, Pinto, Monica, Polz, Katja, Ramage, John, Reijneveld, Jaap C, Serpentini, Samantha, Tomaszewski, Krzysztof A, Vassiliou, Vassilios, Verdonck-de Leeuw, Irma M, Vistad, Ingvild, Young, Teresa E, Aaronson, Neil K, van de Poll-Franse, Lonneke V and EORTC QLG 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, vol. 16, pp. 1-15, doi: 10.1186/s12955-018-0920-0.

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Title Understanding the quality of life (QOL) issues in survivors of cancer: towards the development of an EORTC QOL cancer survivorship questionnaire
Author(s) van Leeuwen, Marieke
Husson, Olga
Alberti, Paola
Arraras, Juan Ignacio
Chinot, Olivier L
Costantini, Anna
Darlington, Anne-Sophie
Dirven, Linda
Eichler, Martin
Hammerlid, Eva B
Holzner, Bernhard
Johnson, Colin D
Kontogianni, Meropi
Kjær, Trille Kristina
Morag, Ofir
Nolte, SandraORCID iD for Nolte, Sandra orcid.org/0000-0001-6185-9423
Nordin, Andrew
Pace, Andrea
Pinto, Monica
Polz, Katja
Ramage, John
Reijneveld, Jaap C
Serpentini, Samantha
Tomaszewski, Krzysztof A
Vassiliou, Vassilios
Verdonck-de Leeuw, Irma M
Vistad, Ingvild
Young, Teresa E
Aaronson, Neil K
van de Poll-Franse, Lonneke V
Journal name Health and quality of life outcomes
Volume number 16
Article ID 114
Start page 1
End page 15
Total pages 15
Publisher BioMed Central
Place of publication London, Eng.
Publication date 2018-06-04
ISSN 1477-7525
Keyword(s) cancer survivor
health- related quality of life
survivorship questionnaire
activities of daily living
quality of life
science & technology
life sciences & biomedicine
health care sciences & services
health policy & services
Summary 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.
Language eng
DOI 10.1186/s12955-018-0920-0
Field of Research 1117 Public Health And Health Services
HERDC Research category C1 Refereed article in a scholarly journal
ERA Research output type C Journal article
Copyright notice ©2018, The Author(s)
Persistent URL http://hdl.handle.net/10536/DRO/DU:30117282

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