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

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.Electronic supplementary materialThe online version of this article (10.1186/s12955-018-0920-0) contains supplementary material, which is available to authorized users.

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“…We used the EORTC QLQ-C30 assessment which might not capture all aspects of HRQOL relevant for (very) long-term cancer survivors. Future studies could use the EORTC QLQ-Cancer Survivorship questionnaire to better assess HRQOL of (very) long-term cancer survivors [35]. We also have to contend with the issue of missing data on relevant variables such as cancer stage because this variable had limited registration by the cancer registries in the period when the survivors were first diagnosed.…”

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“…Several instruments, most notably the Impact of Cancer questionnaire (Zebrack et al ., ), aim to address a range of physical and psychosocial survivorship issues. The EORTC Quality of Life Group is currently carrying out a project to adapt its HRQOL measures to the survivorship setting (van Leeuwen et al ., ). Development of new computer‐adaptive approaches and applications for smartphones facilitates HRQOL assessment in a cost‐effective manner with greater precision.…”

Cancer treatment and survivorship statistics, 2019

“…Although emotional well‐being is generally comparable to that of those with no history of cancer for longer term survivors (5 years or more), significant numbers report lower overall physical well‐being than their peers . The most common side effects of cancer and its treatment are pain, fatigue, and emotional distress . Among survivors diagnosed at a young age, long‐term and late effects, such as subsequent cancers, neurological sequelae, cardiomyopathies, sexual development and/or dysfunction, and fertility impairment, are of particular concern.…”