KCCure is dedicated to representing the patient voice with evidenced based research. As a patient advocacy organization, we engage directly with patients through a variety of on-line communities, through our patient ambassador program and our patient advisory board. 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 those living with and impacted by the disease.
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.
KCCure Led Publications
- Staehler M, Battle D, Bex A, Hammers H, George D. Re: Sunitinib Alone or after Nephrectomy in Metastatic Renal-cell Carcinoma. Eur Urol. 2018.
- Bergerot C, Battle D, P B, Hammers H, Jonasch E, Derweesh I, et al. Patient-reported frustrations in renal cell carcinoma (RCC) care delivery: Results of a joint European Association of Urology (EAU)/KCCure survey. J Clin Oncol 2018;36 (suppl; abstr 4570).
- Battle D, Hammers H, Jonasch E, Derweesh I, George D, Ljungberg B, et al. PATIENTS PERSPECTIVES ON ADJUVANT THERAPY IN RENAL CELL CARCINOMA. The Journal of Urology. 2018;199, Issue 4, e875.
- Battle D, Hammers H, Jonasch E, Derweesh I, George D, Bex A, et al. Anxiety and patients: Perspectives on surveillance and adjuvant therapy in renal cell carcinoma. J Clin Oncol 2018;36 (suppl; abstr 4571).
- Bergerot C., et al. (2018) “Distress in patients with renal cell carcinoma: A curious gap in knowledge.” BJU Int.