Results of a global survey highlight areas for improvement in the care of patients with renal cell carcinoma (RCC). Details of the survey were presented at IKCS: Europe 2023.1

The survey suggests that patients and their caregivers do not always understand key information about RCC or receive appropriate genetic testing or counseling. Patients are also facing obstacles to care and lack access to clinical trials, according to the results.

This 35-question survey was conducted by the International Kidney Cancer Coalition (IKCC) between September and November 2022. A total of 2213 responses were collected from individuals in 39 countries.

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Respondents included 1655 RCC patients, 547 caregivers, and 11 individuals who did not disclose whether they were a patient or caregiver. A majority of patients were men (54%), were 46-55 years of age (59%), had clear cell RCC (58%), and had been diagnosed in the 5 years prior to survey completion (63%).

Key Survey Results

The survey results showed that some patients did not understand their likelihood of survival. Overall, 37% of patients with stage I-II RCC and 47% of those with stage III-IV RCC did not understand their likelihood of survival beyond 5 years.

Another key finding was that patients younger than 45 years of age at diagnosis had significantly more obstacles to care than patients who were older than 65 years.

Across age groups, patients said their emotional wellbeing had been impacted by fear of RCC recurrence (28%), disease-related anxiety (20%), or sadness/depression (11%).

A minority of patients (35%) were asked to consider participating in a clinical trial. However, interest in trials and satisfaction with the trial experience was high. Among patients asked to consider clinical trials, 70% agreed to participate, and 65% said they were “satisfied” or “very satisfied” with their trial experience.

Among patients with a high risk of inherited RCC, nearly half (48%) did not receive appropriate genetic testing or counseling. A high risk of inherited RCC was defined as at least 2 of the following: bilateral disease, a first-degree relative with RCC, or age younger than 46 years at diagnosis.

Opportunities for Action

The results of this survey suggest that RCC patients and their caregivers may be underinformed about RCC, and patient care can be improved. However, when comparing the current results with results from IKCC’s prior surveys from 2018 and 2020, the patient experience does not appear to have improved.2,3

“If anything, this third survey showed a worsening in some instances of a number of obstacles that patients experience,” said study author Rachel H. Giles, MD, PhD, chief executive officer of IKCC. “For example, the road to diagnosis was longer. We suspect that our data from this year is actually reflective of the COVID pandemic in many respects.”

“In general, we have measured a significant increase in anxiety and a greater increase in dissatisfaction with the experience of their care,” Dr Giles added. “Patients still feel like the information they’re receiving is not something that they easily understand, and that’s actionable, but it’s hard to grasp.”

Dr Giles did note that IKCC and its affiliated organizations use results from these surveys to inform changes to care, policy, and research.

For example, a key finding from all 3 surveys is that French patients with RCC appear significantly more satisfied with their care than German patients with RCC. So a goal has been to determine why patients in Germany are so dissatisfied when, on paper, they have excellent access to care, Dr Giles said.

She noted that differences in best practices across countries will be addressed at the IKCC Global Kidney Cancer Summit this June. In particular, representatives from Korea will be sharing their practices related to survivorship care.

“They have exceptional survivorship care that many other countries don’t have,” Dr Giles said. “So we’d like them to share with us, “What does that look like?’”

Disclosures: The survey was funded by Bristol Myers Squibb, Ipsen, Merck KGaA, and Pfizer. Data were independently analyzed by the Picker Institute.


1. Giles RH, Marconi L, Maskins D, et al. 2022 Global Patient Survey: Reported experiences of diagnosis, management, and burden of renal cell carcinomas. IKCS: Europe 2023. April 21-22, 2023. Abstract 6. 

2. Giles R, Maskens D, Bick R, et al. Diagnosis, management, and burden of renal cell cacinomas: Results from a global patient survey in 43 countries. Ann Oncol. 2019;30(5): V364. doi:

3. Giles R, Maskens D, Bick R, et al. Patient-reported experience of diagnosis, management, and burden of renal cell carcinomas: Results from a global patient survey in 43 countries. Eur Urol Open Sci. 2022;37:3-6. doi:10.1016/j.euros.2021.12.003