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

• Published in: Health and quality of life outcomes 2018-06, Vol.16 (1), p.114-114, Article 114
• Main Authors: 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
• Format: Article
• Language: English
• Subjects: Activities of Daily Living; Activities of Daily Living - psychology; Adult; Aged; Analysis; Annan medicin och hälsovetenskap; Arthralgia; Body image; Breast cancer; Cancer; Cancer survivor; Cancer Survivors; Cancer Survivors - psychology; Cancer therapies; Care and treatment; Clinical trials; Cognitive ability; Disease-free; Disease-Free Survival; Europe; Fatigue; Female; Health aspects; Health- related quality of life; Humans; Male; Medical research; Mental disorders; Mental health; Middle Aged; Modules; Multiple myeloma; Nausea; Neoplasms; Neoplasms - psychology; Neuropathy; Oncology; Other Medical Sciences; Oto-rino-laryngologi; Otorhinolaryngology; Ovarian cancer; Pain; Patient Reported Outcome Measures; Patients; Population; psychology; Quality of Life; Quality of Life - psychology; Questionnaires; Side effects; Sleep; Sleep disorders; Survival; Survivorship; Survivorship questionnaire; Time Factors; Womens health
• ISSN: 1477-7525; 1477-7525
• DOI: 10.1186/s12955-018-0920-0

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. 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. 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. 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.