Barcelona, Spain (UroToday.com) A large-scale global survey of renal cell carcinoma (RCC) patients to capture real-world experiences has never been undertaken. The International Kidney Cancer Coalition (IKCC) is a federation of 38 affiliated patient organizations representing 1.2 million patients worldwide that is committed to reducing the global burden of kidney cancer. In this abstract, the IKCC investigators report the results of a 35-question global patient survey designed to identify geographic variations in patient education, experience and awareness, access to care, best practices, quality of life, involvement in clinical trials and to highlight unmet needs. The survey was conducted in September through October 2018 and completed online or in paper form by kidney cancer patients and/or their caregivers. The survey was distributed in 14 languages.
The study results include 1,983 respondents from 43 countries, 1,400 of whom were patients and the remaining 583 were caregivers. Key results include clinical trials, patient knowledge and understanding, quality of life, and shared decision making. When asked about subtype understanding, 43% of respondents stated they “did not understand their subtype” and an additional 38% stated they “were not told their subtype at diagnosis.” 11% of patients still did not know their subtype at the time of the survey. Approximately 1 in 3 patients reported not being engaged in their treatment decisions at all; this finding occurred across all stages but was more common at major cancer centers than in community or local hospitals.
70% of patients reported not being asked to participate in clinical trials; 89% of those patients said it was “fairly likely they would have participated if asked.”
Nearly all respondents (96%) reported experiencing psychosocial issues related to their RCC diagnosis, citing depression-related anxiety, fear of recurrence, fear of dying, and general anxiety. Dishearteningly, 50% of patients reported not talking about their psychosocial issues with their healthcare providers.
Finally, 92% of patients responded that their physical well-being was impacted since initial RCC diagnosis with the most common conditions including fatigue (66%), bowel changes (33%), muscle weakness (32%), and sleeplessness (31%).
In conclusion, the IKCC investigators conducted the first-ever global survey of patients with RCC, highlighting a significant lack of information, patient engagement, and lack of psychosocial support provided. This work supports the importance of physicians adapting to providing more and better information to patients diagnosed with RCC and their caregivers.
Presented by: Rachel Giles, Ph.D., Associate Professor of Nephrology and Hypertension, University Medical Center Utrecht, Utrecht, the Netherlands
Written by: Jacob Berchuck, MD, Medical Oncology Fellow at the Dana-Farber Cancer Institute, Twitter: @jberchuck at the 2019 European Society for Medical Oncology annual meeting, ESMO 2019 #ESMO19, 27 Sept – 1 Oct, 2019 in Barcelona, Spain