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

EORTC QLG

Research output: Contribution to journalArticleScientificpeer-review

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 cancel 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 HROOL 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 coie 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
Number of pages15
JournalHealth and Quality of Life Outcomes
Volume16
DOIs
Publication statusPublished - 2018

Keywords

  • Cancer survivor
  • Disease-free
  • Health- related quality of life
  • Survivorship questionnaire
  • Oncology
  • EUROPEAN-ORGANIZATION
  • OVARIAN-CANCER
  • INTERNATIONAL DEVELOPMENT
  • NORMATIVE POPULATION
  • PROFILES REGISTRY
  • MULTIPLE-MYELOMA
  • CLINICAL-TRIALS
  • BREAST-CANCER
  • MODULE
  • VALIDATION

Cite this

@article{ec6d92a2168649e9893e8ad809e07d28,
title = "Understanding the quality of life (QOL) issues in survivors of cancer: Towards the development of an EORTC QOL cancer survivorship questionnaire",
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 cancel 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 HROOL 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 coie survivorship questionnaire and three site-specific modules for disease free adult cancer survivors who are at least one year post-treatment.",
keywords = "Cancer survivor, Disease-free, Health- related quality of life, Survivorship questionnaire, Oncology, EUROPEAN-ORGANIZATION, OVARIAN-CANCER, INTERNATIONAL DEVELOPMENT, NORMATIVE POPULATION, PROFILES REGISTRY, MULTIPLE-MYELOMA, CLINICAL-TRIALS, BREAST-CANCER, MODULE, VALIDATION",
author = "{EORTC QLG} and {Van Leeuwen}, Marieke and Olga Husson and Paola Alberti and Arraras, {Juan Ignacio} and Chinot, {Olivier L.} and Anna Costantini and Anne-Sophie Darlington and Linda Dirven and Martin Eichler and Hammerlid, {Eva B.} and Bernhard Holzner and Johnson, {Colin D.} and Meropi Kontogianni and Kjaer, {Trille Kristina} and Ofir Morag and Sandra Nolte and Andrew Nordin and Andrea Pace and Monica Pinto and Katja Polz and John Ramage and Reijneveld, {Jaap C.} and Samantha Serpentini and Tomaszewski, {Krzysztof A.} and Vassilios Vassiliou and {Verdonck-de Leeuw}, {Irma M.} and Ingvild Vistad and Young, {Teresa E.} and Aaronson, {Neil K.} and {van de Poll-Franse}, Lonneke",
year = "2018",
doi = "10.1186/s12955-018-0920-0",
language = "English",
volume = "16",
journal = "Health and Quality of Life Outcomes",
issn = "1477-7525",
publisher = "BioMed Central Ltd.",

}

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

In: Health and Quality of Life Outcomes, Vol. 16, 114, 2018.

Research output: Contribution to journalArticleScientificpeer-review

TY - JOUR

T1 - Understanding the quality of life (QOL) issues in survivors of cancer

T2 - Towards the development of an EORTC QOL cancer survivorship questionnaire

AU - EORTC QLG

AU - Van Leeuwen, Marieke

AU - Husson, Olga

AU - Alberti, Paola

AU - Arraras, Juan Ignacio

AU - Chinot, Olivier L.

AU - Costantini, Anna

AU - Darlington, Anne-Sophie

AU - Dirven, Linda

AU - Eichler, Martin

AU - Hammerlid, Eva B.

AU - Holzner, Bernhard

AU - Johnson, Colin D.

AU - Kontogianni, Meropi

AU - Kjaer, Trille Kristina

AU - Morag, Ofir

AU - Nolte, Sandra

AU - Nordin, Andrew

AU - Pace, Andrea

AU - Pinto, Monica

AU - Polz, Katja

AU - Ramage, John

AU - Reijneveld, Jaap C.

AU - Serpentini, Samantha

AU - Tomaszewski, Krzysztof A.

AU - Vassiliou, Vassilios

AU - Verdonck-de Leeuw, Irma M.

AU - Vistad, Ingvild

AU - Young, Teresa E.

AU - Aaronson, Neil K.

AU - van de Poll-Franse, Lonneke

PY - 2018

Y1 - 2018

N2 - 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 cancel 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 HROOL 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 coie survivorship questionnaire and three site-specific modules for disease free adult cancer survivors who are at least one year post-treatment.

AB - 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 cancel 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 HROOL 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 coie survivorship questionnaire and three site-specific modules for disease free adult cancer survivors who are at least one year post-treatment.

KW - Cancer survivor

KW - Disease-free

KW - Health- related quality of life

KW - Survivorship questionnaire

KW - Oncology

KW - EUROPEAN-ORGANIZATION

KW - OVARIAN-CANCER

KW - INTERNATIONAL DEVELOPMENT

KW - NORMATIVE POPULATION

KW - PROFILES REGISTRY

KW - MULTIPLE-MYELOMA

KW - CLINICAL-TRIALS

KW - BREAST-CANCER

KW - MODULE

KW - VALIDATION

U2 - 10.1186/s12955-018-0920-0

DO - 10.1186/s12955-018-0920-0

M3 - Article

VL - 16

JO - Health and Quality of Life Outcomes

JF - Health and Quality of Life Outcomes

SN - 1477-7525

M1 - 114

ER -