Purpose
Living with advanced renal cell carcinoma (RCC) can be challenging. Previous research suggests that patients are faced with variable complexities, although the main focus has been on physical problems. We aimed to generate empirical evidence to better understand patients’ perceptions of adverse impact on wellbeing, to reveal priority concerns, and to explore moderators that could point to a greater risk for declining health status in this patient population.
Methods
A prospective, international, and cross-sectional online survey was conducted, comprising a demographic/clinical data form, the Functional Assessment of Cancer Therapy-Biologic Response Modifiers (FACT-BRM) questionnaire, and bespoke closed- and open-ended questions.
Results
Data from 105 participants were analysed. The typical participant was male, on targeted therapy, and middle-aged (median 42 years), with a median of 54 months since diagnosis, and predominantly originated from the USA or UK. Being unable to work (46%), worrying that their condition would worsen (45%), concerns about psychological support for their partner or family (44%), and being burdened by urinary frequency (43%) were major problems for over 40% of this sample. Concerns about future response to treatment, running out of treatment options, cancer relapse, declining health, dying, and impact on family were also expressed. Older age was linked to higher wellbeing scores.
Conclusion
Relying on patient-reported outcomes, we were able to reveal the impact of advanced RCC and its management on several interrelated areas of patient wellbeing. These findings need to be validated in other contexts to ensure they are generalisable.
