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
SN - 1477-7525
VL - 16
JO - Health and Quality of Life Outcomes
JF - Health and Quality of Life Outcomes
M1 - 114
ER -