Abstract
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.
Highlights
With continuing improvement in early detection and treatment, and an aging population, the number of cancer survivors is increasing steadily
In phase 1b we asked a sample of Literature search In October 2014, we performed a literature search in PubMed and PsycINFO, the goal of which was to identify the full range of health-related quality of life (HRQOL) issues relevant to all adult diseasefree cancer survivors, irrespective of their specific diagnosis
Research articles included in the review were most commonly qualitative studies, studies developing cancer survivor specific measures, or studies reporting the use of a self-constructed study-specific measure
Summary
With continuing improvement in early detection and treatment, and an aging population, the number of cancer survivors is increasing steadily. Many of the cancer-related HRQOL questionnaires that are available today, including the European Organisation for Research and Treatment of Cancer core questionnaire (EORTC QLQ-C30) [2] and the Functional Assessment of Cancer Therapy – General (FACT-G) [3], with their supplementary site-specific modules, may not be entirely appropriate for assessing the experiences of disease-free cancer survivors. These questionnaires include items assessing acute and treatment-related symptoms (e.g., vomiting) that are typically no longer relevant in the post-treatment survivorship period.
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