Patient-reported Experience of Diagnosis, Management, and Burden of Renal Cell Carcinomas: Results from a Global Patient Survey in 43 Countries

Rachel Giles, Deborah Maskens, Robert Brick, Robin Martinez, Malcolm Packer, Daniel Heng, James Larkin, Alex Bex, Michael Jewett, Eric Jonasch, Sara J. MacLennan* (Corresponding Author)

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

2 Citations (Scopus)
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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.
Original languageEnglish
Pages (from-to)3-6
Number of pages4
JournalEuropean Urology Open Science
Early online date17 Jan 2022
Publication statusPublished - 2022

Bibliographical note

Funding/Support and role of the sponsor: This project was funded by equal unrestricted grants from Bristol-Myers Squibb, Ipsen Pharma, Novartis, and Pfizer according to the IKCC code of conduct governing corporate funding ( The sponsors were not involved in the design or analysis of the survey or approval of the final manuscript.


  • kidney cancer
  • clinical trials
  • psychosocial support
  • shared decision-making
  • patient-reported experience


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