CEO International Kidney Cancer Coalition Duivendrecht, Noord-Holland, Netherlands
Background: 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.
Methods: A 35-question survey 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. It was completed online or in paper form between 26 September 2022 and 21 November 2022.
Results: Over 2,600 responses were registered. After censoring for pre-specified criteria (6 consecutive questions answered, that the respondent was a patient or caregiver affected by RCC, etc), 2,213 responses were included for analysis. Key findings included: --patients do not understand their likelihood of survival >5 years (37%-47% dependent on stage of disease, despite the implications to their psychological well-being, treatment decisions, and life planning --patients report regional differences in shared-decision making trends --47.6% at greatest risk for hereditary disease (2 or more risks: bilateral disease, a first degree relative with RCC, < 46 years at diagnosis) are not being tested or counseled appropriately --Younger patients ( < 45 yrs) experience significantly more obstacles to care than older patients (>65 years) --Patient preference for follow-up schedules varied significantly by country; 41% in Japan wanted their healthcare team to decide vs 2% in India and 0% in Mexico. --Most patients were not asked to join a clinical trial, even though a majority indicated they would be likely to participate if asked.
Conclusions: The IKCC and its global affiliates will be using the results to ensure that patients’ voices are heard. Furthermore, individual countries can use their reports to advance their understanding of patient experiences and to drive improvements in care provision locally.