Kidney Cancer Patient Centered Research

KCCure is dedicated to representing the patient voice when it comes to research in kidney cancer.  As a patient advocacy organization, we engage directly with patients through a variety of on-line communities, through our patient ambassador programmed our patient advisory board to communicate directly with patients. Our kidney cancer patient centered research is aimed at improving the quality of lives of all patients by better identifying and defining the needs and wishes of patients.

KCCure Research on Patient Anxiety Presented at ASCO 2018

KCCure Scientific Advisory Board Member Cris Bergerot presented findings from a KCCure survey related to anxiety for kidney cancer patients.  Our research found that patient anxiety rates are much higher than previously thought – with 70 percent of patient indicating anxiety levels that would necessitate pyscho-oncological support.  By an overwhelming majority, patients indicated that fear of recurrence was their biggest concern.

KCCure Presentation on Patient Views Related to Adjuvant Therapy

Until recently, no adjuvant therapy existed for treated localized RCC with a high risk of recurrence.  Last fall, the FDA approved the use of sunitinib in the adjuvant setting.  As a result, KCCure asked patients their views related to adjuvant therapy.  Our findings indicate that patients would wish to use adjuvant therapy based on an increase in disease free survival.  We also found that toxicity was less of a concern for patients and that efficacy was the most important factor in deciding whether or not engage in therapy.  This research was presented at ASCO-GU and also at the annual AUA (American Urological Association) meeting.

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