CN56 Well-being and healthcare concerns of patients with advanced renal cell carcinoma: The RCC PROMs international survey

Renal cell carcinoma (RCC) is the most common type of kidney cancer, most frequently diagnosed in men over 60 and in higher-income settings. Around 30% of cases are of advanced RCC. Despite progress with targeted therapies and immunotherapy, patients with advanced RCC face difficulties with day-to-day living. Patient-reported outcomes provide crucial information to enhance clinicians’ understanding about what issues patients perceive to have the greatest impact on them and can help promote person-centred approaches to treatment and disease management. As part of the larger EONS PROMs project (https://cancernurse.eu/research/proms_project/), an international online survey was launched in May 2022. With a sampling confidence level of 95% and a margin of error of 10%, we aimed to involve ≥89 patients with advanced RCC. The survey comprised a bespoke demographic/clinical form, the Functional Assessment of Cancer Therapy-Biologic Response Modifiers (FACT-BRM) questionnaire, and three questions on patients’ priority concerns. The survey included 105 patients. Typically, patients were men (n=62, 59%), on targeted therapy (n=31, 33.7%), middle-aged (median=44 years), and over 3 years since diagnosis (median=37 months). Descriptive analysis of individual FACT-BRM items revealed that patients: were bothered by too frequent an urge to urinate (70%), worried their condition will worsen (68%), worried about their partner or family (67%), felt helpless (60%), were unable to work (59%), and were concerned about end-of-life care (58%). Spontaneously, patients identified major concerns with wages, impact on family, and future response to treatment. Older age was a statistically significant predictor of higher FACT-BRM total scores (p<0.001), better physical wellbeing (p<0.001), and better emotional wellbeing (p<0.001). Receiving radiotherapy or targeted therapy were predictive of poorer physical wellbeing (p<0.05). Identifying, monitoring, and responding to concerns relating to physical, emotional, social, and practical aspects of wellbeing can be meaningful steps towards provision of enhanced person-centred care in advanced RCC.