乌鸦传媒

Background

Renal cell carcinoma (RCC) is increasing in global prevalence, thereby increasing the burden to health systems, and most of all, to individual patients and their families. Little is known about the variations in patient experience and best practices among countries. Here, we report on the second biennial Global Patient Survey on the diagnosis, management, and burden of renal cell carcinomas conducted by the International Kidney Cancer Coalition (IKCC) worldwide in 13 languages. The aim of the survey was 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 to identify geographic variations in six topics: patient education, experience and awareness, access to care and clinical trials, best practices, quality of life, and unmet psychosocial needs. The survey was distributed to patients with kidney cancer and their caregivers in 13 languages, through IKCC's 46 Affiliate Organizations and social media from Oct. 29, 2020 to Jan. 5, 2021.

Results

A total of 2,012 responses came from 41 countries. Survey results were analyzed using cross-tabulations by an independent third-party organization. The full global report is publicly available, as well as seven individual country reports where at least 100 responses were received. 42% reported that the likelihood of surviving their cancer beyond 5 years was not explained. Just over one half (51%) reported that they were involved as much as they wanted to be in developing their treatment plan. 56% experienced barriers to their treatment, 41% indicated that "no one" discussed cancer clinical trials with them, 31% were invited to take part in a clinical trial, 45% self-reported that they were insufficiently active, and 50% indicated that they "very often" or "always" experienced disease-related anxiety. A total of 26% said that they "very often" or "always" experienced stress related to financial issues, 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, 48% indicated that they had been offered a biopsy in the past, with only 3% refusing. A total of 47% said they would be willing to undergo biopsy in the future. Patients ≤65 experienced more barriers to quality care, understood their disease less well, and experienced a longer time to diagnosis.

Conclusions

The IKCC and its global affiliates will be using the results to ensure that patients' voices are heard. Actionable points will suggest future projects. Individual countries can use their reports to advance their understanding of patient experiences and to improve local care.

Read an interview about the study here.