Abstract 671P
Background
Renal cell carcinoma (RCC)'s sustained increase in global prevalence has increased the burden to health systems, and most of all, to individual patients and their families. Little is known about the variations in the patient experience and best practices among countries.
Methods
A 35-question survey was designed by a multi-country steering committee of patient leaders to identify geographic variations. The survey was distributed in 13 languages to patients with kidney cancer and their caregivers, through IKCC’s 46 Affiliate Organisations and social media. It was completed online or in paper form between 29 Oct 2020 and 5 Jan 2021.
Results
2,012 (1,586 patients, 417 carers, 9 undisclosed) responses were recorded from 41 countries in 13 languages. Survey results were analysed using cross-tabulations by an independent third-party organisation. The full global report will be publicly available, as well as 7 individual country reports where at least 100 responses were received. 52% lacked understanding of subtype at diagnosis 42% reported that the likelihood of surviving their cancer beyond 5 years was not explained 51% reported that they were involved as much as they wanted to be in developing their treatment plan 41% indicated that “No one” discussed cancer clinical trials with them 31% were invited to take part in a clinical trial 56% experienced barriers to their treatment 45% self-reported that they were insufficiently physically active; 15% were completely sedentary 50% indicated that they ‘very often’ or ‘always’ experienced disease-related anxiety 55% indicated that they ‘very often’ or ‘always’ experienced a fear of recurrence 52% reported having talked to their doctor/healthcare professional about their concerns.
Conclusions
These results will ensure that patient and caregiver voices are heard and acted upon, with ultimate incorporation of these findings by much broader communities into care pathways, clinical practice, or health technology assessments. Furthermore, individual countries can use their reports to advance understanding of patient experiences and to drive improvements in providing care locally.
Clinical trial identification
Editorial acknowledgement
Legal entity responsible for the study
The authors.
Funding
BMS, Ipsen, Merck KGaA, Pfizer.
Disclosure
All authors have declared no conflicts of interest.