• Marieke van Leeuwen, Olga Husson, Paola Alberti, Juan Ignacio Arraras, Olivier L Chinot, Anna Costantini, Anne-Sophie Darlington, Linda Dirven, Martin Eichler, Eva B Hammerlid, Bernhard Holzner, Colin D Johnson, Meropi Kontogianni, Trille Kristina Kjær, Ofir Morag, Sandra Nolte, Andrew Nordin, Andrea Pace, Monica Pinto, Katja Polz, John Ramage, Jaap C Reijneveld, Samantha Serpentini, Krzysztof A Tomaszewski, Vassilios Vassiliou, Irma M Verdonck-de Leeuw, Ingvild Vistad, Teresa E Young, Neil K Aaronson, Lonneke V van de Poll-Franse, and EORTC QLG.
• Division of Psychosocial Research & Epidemiology, The Netherlands Cancer Institute, Amsterdam, The Netherlands. m.v.leeuwen@nki.nl.
• Health Qual Life Out. 2018 Jun 4; 16 (1): 114.

BackroundThe 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.MethodsWe 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.ResultsWe 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.ConclusionsCompared 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.

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