This observation study involved 450 patients with renal cell carcinoma (RCC) and was conducted via social media and patient networking platforms. The survey was designed to investigate frustration points associated with the care of RCC patients.
Overall, 71.5% reported frustration, including emotional (48.4%) and practical (23.1%). The most common points of frustration included fear of recurrence or progression, distrust of the cancer care system, and lack of information. Older age was linked with practical sources of frustration, whereas female gender and non–clear cell histology were associated with both practical and emotional frustration.
Solutions suggested by patients included greater compassion on the part of clinicians, improved access to information, and research to improve chances of a cure. “Spend more time listening to patients” was the most frequent source of frustration reported by patients in this survey.
It is hoped that the results of this study will serve as a wakeup call and reminder that patients want to feel listened to and cared for by clinicians.