Update of the EORTC health-related quality of life modules

Period

01/01/2026 to 31/12/2028

Abstract project

Bladder cancer and its treatments can significantly affect a person’s quality of life. However, current tools used to measure this—called patient-reported outcome measures (PROMs)—may not fully reflect what patients today find important. These questionnaires, originally developed in the 1990s, may miss key issues related to newer treatments, changing care environments, and evolving patient expectations.

This international study aims to improve and validate updated questionnaires that assess the quality of life of people with bladder cancer. These tools will help researchers and healthcare providers better understand the impact of the disease and its treatments, from the patient’s perspective. In earlier phases of this project, we revised the existing questionnaires by updating outdated items and adding new ones. We also recommended combining the tools into one flexible module, with patients only answering questions relevant to their specific treatment path.

In this next phase, we will test the updated questionnaire in nine countries and across different languages. First, we will conduct structured interviews with patients to ensure the questionnaire is relevant, understandable, and complete. Then, we will carry out statistical analyses to check how well the questionnaire performs in terms of structure, reliability, and its ability to detect differences between patient groups.

By involving patients from different cultural and clinical backgrounds, this study ensures that the final tool is inclusive and accurate. The updated questionnaire will be used in future international bladder cancer studies to assess patient outcomes more effectively. Ultimately, this will support more patient-centered research and improve care for people living with bladder cancer.