Patient-reported experience of diagnosis, management, and burden of renal cell carcinomas: Results from the 2020 Global Patient Survey from 41 countries.
Authors: Giles Rachel H. , Maskens Deb , Martinez Robin , Kastrati Karin , Castro Carlos , Julian Mauro Juan Carlo , Bick Robert , Packer Malcolm , Heng Daniel Yick Chin , Larkin James , Bex Axel , Jonasch Eric , Maclennan Sara Jane , Jewett Michael A.S. 
Published: June 2021

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Background: The sustained increased global prevalence of kidney cancer (renal cell carcinoma, RCC) has increased the burden to health systems, and most of all, to individual patients and their families. Although individual national surveys have been held, no conclusions could be drawn about country-level variation in patient experience or best practice. Here, we report on the second biennial Global Patient Survey on the diagnosis, management, and burden of RCC. Conducted by the International Kidney Cancer Coalition (IKCC) and involving its Affiliate Organizations worldwide, the survey aims to improve collective understanding and to contribute toward the reduction of the burden of kidney cancer around the world. Methods: A 35-question survey on the diagnosis, management, and burden of RCC was designed by a multi-country steering committee of patient leaders to identify geographic variations in 6 key dimensions: patient education, experience and awareness, access to care and clinical trials, best practices, quality of life, and unmet psychosocial needs. 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 analyzed using cross-tabulations by an independent third-party organization. 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: The IKCC and its global affiliates will use these results to 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.