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 (HRQL). The EORTC is developing a cancer survivorship assessment strategy consisting of a survivorship core questionnaire which can be used as a stand-alone questionnaire or in combination with a cancer site-specific (survivorship) module.
The strategy we are developing is intended to be used in “cancer survivors” who have completed treatment with curative-intent (with the exception of maintenance treatment) at least one year earlier, and are disease-free (no evidence of active cancer).
In phase I of this questionnaire development project we interviewed 575 disease-free cancer survivors (breast, colorectal, prostate, bladder, gynecological, head and neck, lung, or testicular cancer, lymphoma, melanoma, or glioma) recruited from 14 countries to generate one generic and 11 site-specific issue lists. The resulting consolidated generic issue list consisted of 122 issues. Based on the results, we have developed a provisional survivorship core questionnaire (QLQ-SURV111) and three provisional site-specific survivorship modules for breast (BR-SURV45), colorectal (CR-SURV34) and prostate (PR-SURV30) cancer (Phase II). These questionnaires have been translated into 14 languages and have been pilot-tested in a sample of 400 survivors from a range of European countries and Australia, Brazil and India (phase IIIa), resulting in the QLQ-SURV100, BR-SURV40, CR-SURV33, and the PR-SURV19.
To meet the needs for a shorter version of the QLQ-SURV100 that is suitable for evaluating long-term health-related quality of life (HRQOL) outcomes in clinical trials, we have made a distinction between essential and optional scales of the QLQ-SURV100, based on the correspondence with the QLQ-C30 scales and their underlying construct. After, we have consulted patient experts, health care professionals, and HRQOL researchers, to judge whether the remaining scales indeed were non-essential. Based on the prioritizing of the scales we have moved the essential scales to the beginning of the questionnaire.
Currently, we are pretesting the updated QLQ-SURV100 (changed order and items updated in phase IIIa) before validating the questionnaire in a large scale international study.
Recruiting for pretesting in phase IIIb
June 2021: final versions of generic survivorship core questionnaire plus 3 survivorship modules for breast, colorectal and prostate cancer survivors.
Nowadays, more and more people are living beyond cancer (cancer survivors). We aim in this project to develop questionnaires which can be used in the future to investigate the quality of life of cancer survivors. This is important as the existing questionnaires of the EORTC ask about patients under treatment for cancer and their quality of life. In the questionnaires for cancer survivors we aim to include the most important aspects of the experience of having had cancer in the past, focusing on quality of life issues that may remain or arise after primary treatment has been completed. It’s of importance to understand the positive and negative consequences of cancer and its treatment, to improve the care of patients in the future.