Pour favoriser une compréhension collective, l’International Kidney Cancer Coalition (IKCC) s’associe à des organismes partenaires, comme Cancer du rein Canada, pour concevoir et mener, auprès de patients, un sondage mondial bisannuel sur le cancer du rein. Le sondage est ouvert à toute personne ayant reçu un diagnostic de cancer du rein ou agissant à titre d’aidant.
Les résultats recueillis par l’entremise des sondages mondiaux bisannuels aident Cancer du rein Canada et l’IKCC à mettre au point des programmes d’éducation, de sensibilisation et de revendication fondés sur des données probantes, qui répondent aux besoins des personnes touchées par le cancer du rein des quatre coins de la planète. Le rapport sommaire donne un aperçu de l’expérience globale des patients atteints d’un cancer du rein, en particulier, le diagnostic, les connaissances, la qualité de vie, la prise de décision partagée, les essais cliniques et la fonction rénale. Les constatations principales du Canada sont présentées ci-dessous.
En 2026, Cancer du rein Canada centre ses efforts sur le bien-être émotionnel des Canadiens et Canadiennes. Les répercussions d’un diagnostic s’étendent au-delà de la santé physique; elles affectent également le bien-être émotionnel de plusieurs façons, par exemple, l’anxiété liée aux examens d’imagerie, les relations changeantes, l’isolement et les craintes quant à ce que réserve l’avenir. D’après les résultats de la tranche canadienne du sondage, 82 % des patients canadiens atteints d’un cancer du rein ont affirmé éprouver des difficultés émotionnelles ou psychosociales associées à leur diagnostic et à leur traitement. Et pourtant, de nombreux patients évitent encore de discuter ouvertement de ces difficultés avec leur famille, leurs amis ou leur équipe de soins. Ce printemps, nous souhaitons sensibiliser le public au bien-être et aux besoins émotionnels des Canadiens et Canadiennes aux prises avec un cancer du rein en diffusant de l’information, des ressources et des outils de soutien qui invitent à avoir des conversations plus ouvertes et aident les patients et leurs aidants à obtenir du soutien lorsqu’ils en ont le plus besoin.
IKCC Global Patient Survey Key Findings – Canada
(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)
