1942 Bladder cancer (merge of BLM30 and NMIBC24)

Patients with bladder cancer experience a range of side effects with strong physical and psychological implications. Hence, it is important to have validated health-related quality of life (HRQoL) questionnaires in place for this specific group. Two EORTC questionnaires for BC were developed 20 years ago, but never were validated in a phase IV international field study. It is of utmost importance to continue this previous work in order to establish validated questionnaires to assess HRQoL in bladder cancer patients.

However, before continuing to a large international validation study, an update of both modules is required. In addition, we will also include important HRQoL issues for metastatic bladder cancer in this update process.

The current project aims to answer the following three research questions through a phase 1-2 study:

1) Is there indeed a need to update the EORTC QLQ-BLM30 and the EORTC QLQ-NMIBC24 modules?

2) Is it appropriate to merge the (updated) EORTC QLQ-BLM30 and EORTC QLQ-NMIBC24 modules?

3) Which additional items need to be added to evaluate HRQoL of patients with metastatic BC?

• Establishment of collaborative research team
• Ethical approval received
• Completion of screening for 4 different systematic review searches
• Development of the issue list (based on the results of the systematic reviews)
• Conduction of all interviews with healthcare professionals
• Conduction of 47 patient interviews
• First paper re-submitted after major revisions to Quality of Life Research

Report of Phase 1-2 to be submitted by September 2022.

Diagnosis and treatment of bladder cancer severely influence the lives of patients with bladder cancer. Measuring a patient’s quality of life, in order to improve treatment approaches (and consequently his or her quality of life), is therefore of utmost importance. Hence, it is important to know exactly which questions we need to ask bladder cancer patients. What do they prioritize as most important quality of life issues? With our research, we will investigate which quality of life issues are most important and relevant for patients with bladder cancer and put them into one questionnaire. With this questionnaire quality of life of bladder cancer patients can be measured in clinical trials and during cancer treatment, and thereby this questionnaire can contribute to improved quality of life bladder cancer patients in the future. We will develop this questionnaire by screening previous published studies for important quality of life issues and by conducting interviews with patients.