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.

The EORTC Quality of Life Group has just completed the final phase (field-testing and validation) of an international project to develop a stand-alone measure of spiritual well-being (SWB) for palliative cancer patients. Participants (n = 451)-from 14 countries on four continents; 54% female; 188 Christian; 50 Muslim; 156 with no religion-completed a provisional 36-item measure of SWB plus the EORTC QLQ-C15-PAL (PAL), then took part in a structured debriefing interview. All items showed good score distribution across response categories. We assessed scale structure using principal component analysis and Rasch analysis, and explored construct validity, and convergent/divergent validity with the PAL. Twenty-two items in four scoring scales (Relationship with Self, Relationships with Others, Relationship with Someone or Something Greater, and Existential) explained 53% of the variance. The measure also includes a global SWB item and nine other items. Scores on the PAL global quality-of-life item and Emotional Functioning scale weakly-moderately correlated with scores on the global SWB item and two of the four SWB scales. This new validated 32-item SWB measure addresses a distinct aspect of quality-of-life, and is now available for use in research and clinical practice, with a role as both a measurement and an intervention tool.

Overall, patients with rectal cancer recover well in the long run, with HRQOL levels comparable to that of the general population. HRQOL outcomes provide valuable data that may be used to improve information disclosure to patients.

These findings add to the body of evidence available regarding pCRT and help clinicians to make more informed treatment decisions.

This is a repository copy of An international update of the EORTC questionnaire for assessing quality of life in breast cancer patients: EORTC QLQ-BR45.

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Objective Social relationship coping efficacy (SRCE) is the confidence to engage in behaviors that can maintain or enhance close social relationships in the context of illness. This study focused on psychometric analyses of the SRCE scale and its role in maintaining or enhancing personal relationships, social support, and quality of life (QOL). Method A mixed diagnosis sample (N = 151) of cancer patients completed a variety of measures: physical debilitation, received emotional and instrumental support, SRCE, and QOL. Results The SRCE scale is a 10‐item, one‐factor, internally reliable (α = 0.965) measure with strong concurrent validity in relation to measures of social support. SRCE fully mediated the relationship between physical debilitation and both instrumental and emotional received support. SRCE also was directly related to both social/family well‐being and psychological distress, and this relationship was also partially mediated by social support. Conclusions The results corroborated that SRCE might account for changes in both instrumental and emotional support. Also, the direct and indirect relationship (mediated by social support) of SRCE with both social/family well‐being and distress indicated that interventions to increase SRCE with those at risk for social support loss may bolster social support in personal relationships as well as enhance emotional well‐being and quality of life.

Although HRQOL profile of these patients is broadly similar to that of healthy subjects, there are still important limitations in terms of key symptoms. The use of validated questionnaires is crucial to provide standardised information on relevant health status areas.