Teresa Young, Linda Dirven, Anne-Sophie Darlington, Andrew Nordin, Jaap C. Reijneveld, Eva Hammerlid, Colin D. Johnson, John Ramage, Lonneke V. van de Poll-Franse, Martin Eichler, Monica Pinto, Anna Costantini, Olga Husson, Samantha Serpentini, Ingvild Vistad, Katja Polz, Ofir Morag, Juan Ignacio Arraras, Sandra Nolte, Krzysztof A. Tomaszewski, Meropi D. Kontogianni, Olivier Chinot, Andrea Pace, Paola Alberti, Bernhard Holzner, Neil K. Aaronson, Vassilios Vassiliou, Trille Kristina Kjaer, Marieke van Leeuwen, Irma M. Verdonck-de Leeuw, Neurology, CCA - Cancer Treatment and quality of life, Otolaryngology / Head & Neck Surgery, APH - Mental Health, APH - Personalized Medicine, van Leeuwen, M, Husson, O, Alberti, P, Arraras, J, Chinot, O, Costantini, A, Darlington, A, Dirven, L, Eichler, M, Hammerlid, E, Holzner, B, Johnson, C, Kontogianni, M, Kjær, T, Morag, O, Nolte, S, Nordin, A, Pace, A, Pinto, M, Polz, K, Ramage, J, Reijneveld, J, Serpentini, S, Tomaszewski, K, Vassiliou, V, Verdonck-de Leeuw, I, Vistad, I, Young, T, Aaronson, N, van de Poll-Franse, L, and Medical and Clinical Psychology
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. Electronic supplementary material The online version of this article (10.1186/s12955-018-0920-0) contains supplementary material, which is available to authorized users.