Survivorship

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. Consecutively, we have pretested the updated QLQ-SURV100 (changed order and items updated in phase IIIa) in a group of 78 survivors.
Currently, we are at the start of the large scale international phase IV validation

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.

Consecutively, we have pretested the updated QLQ-SURV100 (changed order and items updated in phase IIIa) in a group of 78 survivors. The update questionnaire is now ready for validating in a large scale international study.

Current status:

Obtaining ethical approval, translating the questionnaires and preparing the online platform CHES for data collection

Data collection is expected to be completed in December 2023

The phase IV validation study is expected to be completed in December 2024

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.