The International Kidney Cancer Coalition (IKCC) is a federation of 46 affiliated patient organisations representing 1.2 million patients worldwide that is committed to reducing the global burden of kidney cancer. A large-scale global survey of patients with renal cell carcinoma (RCC) to capture real-world experiences has never been undertaken. The 35-question survey was designed to identify geographic variations in patient education, experience, awareness, access to care, best practices, quality of life, and unmet psychosocial needs. A total of 1983 responses were recorded from 43 countries in 14 languages. Analysis revealed key findings. (1) At diagnosis, 43% of all respondents had no understanding of their RCC subtype. (2) Shared decision-making remains aspirational: globally, 29% of all patients reported no involvement in their treatment decision, responding "My doctor decided for me". (3) While 96% of respondents reported psychosocial impacts, surprisingly, only 50% disclosed them to their health care team. (4) Lastly, 70% of patients were not asked to participate in a clinical trial, although 90% indicated they would be interested. The survey reflects patient perspectives from diverse clinical scenarios in which different treatment options are available. The data point to actionable deficits in the fields of clinical trials, psychosocial support, and shared decision-making.
In this brief report, we highlight the key results from the first large-scale global survey of patients with kidney cancer to capture real-world experiences. This survey reflects patient perspectives from diverse clinical scenarios in which different treatment options are available. We conclude that there is a need for improvement in the fields of clinical trials, psychosocial support, and shared decision-making.
European urology open science. 2022 Jan 17*** epublish ***
Rachel Giles, Deborah Maskens, Robert Bick, Robin Martinez, Malcolm Packer, Daniel Heng, James Larkin, Axel Bex, Michael Jewett, Eric Jonasch, Sara MacLennan
International Kidney Cancer Coalition, Amsterdam-Duivendrecht, The Netherlands., Kidney Cancer Canada, Mississauga, ON, Canada., Smart Patients Inc., Mountain View, CA, USA., Kidney Cancer UK, Cambridge, UK., Tom Baker Cancer Centre, University of Calgary, Calgary, Canada., Royal Marsden NHS Foundation Trust, London, UK., Royal Free London NHS Foundation Trust, London, UK., Princess Margaret Hospital Cancer Centre and University of Toronto, Toronto, Canada., MD Anderson Cancer Center, Houston, TX, USA., Academic Urology Unit, Institute of Applied Health Sciences, University of Aberdeen, Aberdeen, UK.