Renal Cancer
Project summary
Renal cell carcinoma (RCC) is the most common form of kidney cancer, a relatively rare but usually fatal disease because early stages are often asymptomatic and diagnosis is often made at an advanced stage. In 2019, the EORTC QLG started to develop a specific EORTC measure to assess the quality of life of RCC patients. The result is the preliminary 38-item QLQ-RCC38 module, which will now be pre-tested in a larger phase 3 project. Phase 3a will refine the module, in particular its relevance to different disease stages and treatments. Based on these data, the module will be adapted accordingly. Phase 3b will collect data to perform preliminary psychometric analyses.
Achievements
The preliminary questionnaire module (Phase 1/2 of module development) has been constructed and is currently being pre-tested (Phase 3).
Preparations for the Phase 3 pre-testing at the participating centres have been completed or are in the final stages (i.e. preparations for patient recruitment, which includes submitting an ethics application, arranging for the necessary materials, training staff on how to collect data etc.). The first structured interviews with patients for refinement of the module (Phase 3a) have been conducted.
Current status:
Phase 3a: preparations for patient recruitment at participating centres / recruitment at centres that have completed preparations
Future plans
As per timetable and milestones outlined in the grant proposal.
For patients
The EORTC QLG developed the 38-item QLQ-RCC38 questionnaire to measure the quality of life in renal cell cancer (RCC) patients, the most common type of kidney cancer. The module will now undergo a larger Phase 3 study, with Phase 3a refining its relevance to different disease stages and Phase 3b assessing how well it measures what it’s supposed to.
Publications
Gross F, Rasmussen IML, Beisland EG, Jorem GT, Beisland C, Pappot H, Arraras JI, Pe M, Holzner B, Wintner LM; EORTC Quality of Life Group. Health-related Quality of Life Assessment in Renal Cell Cancer: A Scoping Review. Eur Urol Oncol. 2024 Oct 3:S2588-9311(24)00215-3. doi: 10.1016/j.euo.2024.09.007. Epub ahead of print. PMID: 39366818.
Health-Related Quality of Life Assessment in Renal Cell Cancer: Navigating the Maze of Measures. A Scoping Review ISOQOL, October 2024 (Poster Number 2027)