Psychosocial burden and lifestyle impact in patients with renal cell carcinoma: a patient-reported outcomes analysis

Background Psychosocial experiences in renal cell carcinoma (RCC) are incompletely characterized by patient-reported data. We described emotional, behavioral, and social experiences among patients with RCC participating in an online wellbeing survey. Methodology This cross-sectional secondary analysis included 91 respondents from the Russian Federation who completed the nine-item International Kidney Cancer Coalition (IKCC) Personalised Psychosocial Wellbeing Report survey during the World Kidney Cancer Day 2021 campaign. Item responses were summarized as counts and percentages; selected proportions are presented with Wilson 95% confidence intervals. Results Of 91 respondents, 52 (57%) were women; 43 (47%) reported metastatic disease, 29 (32%) had undergone local treatment for localized/locally advanced disease, and 16 (18%) were under surveillance. Emotional distress responses were selected by 44 (48%), and 50 (55%) reported recurrence/progression worry with associated distress. In separate items, 29 (32%) preferred not to discuss emotions and 45 (49%) avoided disclosure because they did not want to appear weak or be pitied; overlap between these responses could not be determined. Sleep disturbance was reported by 56 (62%), and 34 (37%) reported little or no physical activity. Relationship strain or deliberate distancing was reported by 32 (35%). Conclusions Psychosocial and lifestyle concerns were common in this self-selected online RCC cohort. The findings support routine attention to emotional concerns and communication barriers while remaining descriptive because the survey was not a validated psychometric instrument.