2022 Global patient survey: Reported experience of diagnosis, management, and burden of renal cell carcinomas.

Abstract

653 Background: Kidney cancer (renal cell carcinoma, RCC) has shown a sustained increase in its global prevalence thereby presenting increasing burden to health systems, and most of all, to individual patients and their families. Little is known about the variations in the patient experience and best practices among countries. Although individual national surveys have been held, no conclusions could be drawn about country-level variation in patient experience or best practice. Here, we report on the 3rd biennial Global Patient Survey on the diagnosis, management, and burden of Renal Cell Carcinomas conducted by the International Kidney Coalition (IKCC) and involving its Affiliate Organisations worldwide in 15 languages. The aim of the survey was to improve collective understanding and to contribute toward the reduction of the burden of kidney cancer around the world. Methods: A 35-question survey on the diagnosis, management, and burden of RCC was designed by a multi-country steering committee of patient leaders to identify geographic variations in 6 key dimensions: patient education, experience and awareness, access to care and clinical trials, best practices, quality of life, and unmet psychosocial needs. EAU, ESMO, ASCO and NCCN Guidelines committees provided topics of interest to support evidence-based medicine (eg patient perspective on active surveillance, biopsies, etc) . The survey was distributed to patients with kidney cancer and their caregivers in 15 languages, through social media and IKCC’s 49 Affiliate Organizations and/or allied organizations who are not formal affiliates. It was completed online or in paper form between 26 September 2022 and 31 October 2022. At the time of this abstract submission, the survey was still open for completion. Results: We will present the top-line results of the 2022 survey for the very first time. Survey results will be analyzed using cross-tabulations by an independent third-party organization, and multi-variate analysis of predetermined variable will be performed. The full global report will be presented, as well as individual country reports where at least 100 responses were received. Conclusions: The IKCC and its global affiliates will be using the results to ensure that patients’ voices are heard. Actionable points will suggest future projects. Furthermore, individual countries can use their reports to advance their understanding of patient experiences and to drive improvements in care provision locally.