To improve collective understanding, the International Kidney Cancer Coalition (IKCC) collaborates with partner organizations like Kidney Cancer Canada to develop and administer a biennial Global Patient Survey on Kidney Cancer. The survey is open to anyone who has received a kidney cancer diagnosis or is a caregiver.
The results gathered through the Global Patient Surveys help Kidney Cancer Canada and IKCC develop evidence-based education, awareness, and advocacy programs that respond to the needs of people affected by kidney cancer around the world. The Highlights Report provides a snapshot of the global kidney cancer patient experience, with a focus on diagnosis, knowledge, quality of life, shared decision-making, clinical trials, and kidney function. Key findings for Canada can be found below.
For 2026, Kidney Cancer Canada is focusing on the emotional wellbeing of Canadians. A diagnosis doesn’t only affect your physical health, it also impacts emotional wellbeing in ways such as anxiety about scans, changing relationships, isolation and worries about what the future holds. According to the Canadian results of the survey, 82% of Canadian kidney cancer patients reported experiencing emotional or psychosocial challenges related to their diagnosis and treatment. Yet many patients still do not openly discuss these challenges with family, friends, or their healthcare teams. This spring we are raising awareness about the emotional wellbeing needs of Canadians living with kidney cancer by sharing information, resources, and support tools that encourage more open conversations and help patients and caregivers access support when they need it most.

IKCC Global Patient Survey Key Findings – Canada
Time to diagnosis
(n=77)
of respondents visited a healthcare professional about their health concerns once before being referred to a surgeon, urologist or oncologist (Q7)
(n=110)
of patients waited less than one month for their diagnosis after first speaking with a healthcare professional about their health concerns (Q8)
(n=63)
of respondents waited 4 months or longer to receive their diagnosis (Q8)
Shared decision-making
(n=175)
of respondents reported that they were definitely involved as much as they wanted to be in decisions about their treatment plan (Q13)
Understanding of diagnosis and treatment options
(n=157)
of respondents completely understood treatment options when planning their treatments (Q16_3)
(n=165)
felt that treatment recommendations were completely understood when planning their treatments (Q16_4)
(n=55)
reported that the likelihood of surviving their cancer beyond five years was not explained when planning their treatments (Q16_6)
Treatment and adherence to oral targeted therapies
(n=241)
of respondents have had some kind of treatment (Q18)
(n=59)
of respondents who received oral targeted therapies (tablets) reported they always follow(ed) their treatment dose and schedule as prescribed (Q19)
(n=106)
of respondents reported they have experienced barriers that have affected their treatment choices (Q24)
Kidney function
(n=56)
experienced kidney function issues prior to their diagnosis (Q25)
(n=49)
said their kidney function issues completely or to some extent affected their treatment choices and decisions (Q26)
(n=96)
experienced kidney function change as a result of treatment (Q27)
(n=103)
of patients said they were always, frequently or almost always concerned about their kidney function (Q28)
(n=77)
of respondents felt completely informed about what they can do to best protect their kidney function (Q29)
(n=221)
reported they have taken steps to help manage or improve their kidney function (Q31)
Emotional wellbeing
In the last 12 months:
(n=193)
of patients experienced an impact to their emotional wellbeing as a result of their kidney cancer or growth (Q35)
(n=64)
The most commonly reported resource respondents would like to access, or access more of, was Counselling and/ or psychological support (Q34)
Cancer clinical trials
(n=63)
of respondents reported they had been asked by a healthcare professional to consider participating in a cancer clinical trial (Q40)
(n=35)
participated in the cancer clinical trial (Q41)
(n=27)
reported they were very satisfied or satisfied with their overall experience of the cancer clinical trial (Q43)
Biomarkers
When asked how they would feel about their doctor using the results of biomarker tests to guide their treatment choices in the future, patients responded (Q46):
(n=89)
would trust the scientific process using biomarker testing
(n=61)
have some reservations and questions but generally trust the process of precision medicine based on biomarker testing
(n=15)
are concerned about relying solely on a biomarker test for determining treatment recommendations
(n=33)
prefer treatment decisions to be based on broader clinical judgement and not just a biomarker test
(n=35)
did not know
Country Specific Key Findings – Canada
(n=162)
of patients were completely given clear information about how to prepare for their surgery (CAN1)
(n=128)
of patients were completely given clear information about how to take care of themself post-surgery (CAN2)
(n=165)
would be willing to travel to a hospital farther away (4 or more hours) to receive care in a cancer centre that offers a less invasive procedure (CAN3)
(n=207)
of respondents were attached to Kidney Cancer Canada (CAN4)
When asked to recommend which areas the Canadian VHL Alliance and Kidney Cancer Canada should prioritise, respondents were most likely to say (CAN5):
(n=138)
Research
(n=136)
Providing the latest information on drugs and treatments
(n=129)
Advocacy for the adoption of the latest therapies
(n=105)
would be very comfortable signing up to a clinical registry, and would consider this in future
(n=58)
said they have already signed onto a clinical registry (CAN6)


























































