This patient survey was conducted from July until September 2019 with the overall goals of assessing patient preferences in treatment selection, side effect experience and management of localized disease. The survey was conducted via survey monkey and was distributed via the KCCure website, on social medial channels including facebook and twitter and outreach through the KCCure mailing list. Over 1,100 patients from over 30 different countries took part.
Demographics
The median age of participants was 57, which is lower than the median age of kidney cancer patients overall (64 years). Women outnumbered men. However the breakdown of patients with metastatic disease was equally split between men and women. A significant weakness of the study was the under-representation of people from communities of color.
Disease Characteristics
Just over half of participants (52%) had metastatic disease at the time of the survey. The majority of patients had clear cell RCC (72%). Almost a quarter of patients did not know their grade.
Treatment Preferences
Patients prefer oral treatment over infusion based therapy. However, nearly half of patients indicate that the delivery mechanism doesn’t matter to them. When asked about the most important outcome or desire that patients want from their treatment, over 60% selected the chance of a complete response as the most important outcome. Low cost and low risk of toxicity were the least important factors.When asked a similar question about a hypothetic treatment, patients again selected a complete response as the number one factor. A treatment that they could stop taking or a treatment with zero side effects were ranked least important. More than half of patients said that they would not be willing to switch to a less effective treatment if it meant that side effects would be more tolerable. Only 12 percent indicated that they would be willing to do so.
Treatment Discontinuation
Side Effect Reporting
Patients often will wait until the next appointment before reporting a side effect to their doctor, even when side effects might be indications of serious adverse events. The one exception is blood in the stool, which most patients say is something they will report immediately. Most patients feel comfortable reporting their side effects to their doctor. But only 50 percent are confident that their doctor will be able to offer suggestions to help. 20 percent of patients are worried about dose reduction or being taken off of therapy. 21% of patients are worried that when side effects are lessened, that their therapy has stopped working.
