The International Kidney Cancer Coalition (IKCC), of which Rose Woodward from Action Kidney Cancer is a founding member, reported the results of a global survey of people with kidney cancer. This survey, which was conducted in 2020, identified several key unmet needs, including that nearly 50% of patients said they were not as involved as they wanted to be in developing their treatment plan.
“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,” wrote Rachel Giles, PhD, of University Medical Center Utrecht in The Netherlands and chair of the IKCC.
Key findings were as follows:
- 51% of patients said they considered themselves to be sufficiently involved in developing their treatment plan
- 41% said that “no one” had discussed cancer clinical trials with them
- 31% said they were invited to take part in a clinical trial
- 56% said they had experienced barriers to treatment
- 50% indicated that they “very often” or “always” experienced disease-related anxiety
- 26% indicated that they “very often” or “always” experienced stress related to financial issues
The full global report is available on the IKCC website, as well as seven individual country reports where at least 100 responses were received.
“The IKCC and its global affiliates will be using the results to ensure that patients’ voices are heard,” Giles and co-authors wrote. “Actionable points will suggest future projects. Individual countries can use their reports to advance their understanding of patient experiences and to improve local care.”