KCCure, Alexandria, VA
Dena Battle , Pavlos Msaouel , Sumanta Monty Pal , Ulka N. Vaishampayan , Michael D. Staehler
Background: Adjuvant treatment with the immune checkpoint inhibitor (CPI) pembrolizumab and the tyrosine kinase inhibitor (TKI) sunitinib are currently standard of care options for patients with high-risk localized renal cell carcinoma (RCC). However, treatment decisions need to be based on anticipated benefit, toxicity risk, and patient goals and values, particularly since multiple trials testing CPIs and TKIs in the adjuvant setting did not meet their primary endpoints. To improve patient selection and communication, we sought to assess how patients perceive the benefits and risks of adjuvant therapy. Methods: The survey was developed by the Kidney Cancer Research Alliance (KCCure), with multidisciplinary representation from urologic surgeons, medical oncologists and patient advocates. The survey was broadcast between 07/2022 and 09/2022 to patients via website, mailing lists and social media platforms. Out of 1,062 participants 639 patients self-identified with localized RCC and 223 patients had stage 3 RCC at initial diagnosis. 113 patients were offered adjuvant therapy by their doctor, 74 patients reported being treated with or having received treatment with adjuvant therapy (18% treated with TKI, 82% with CPI). Results: When asked to assess risk of recurrence, patients with stage 3 disease assessed their average personal risk to be 47%, 10% higher than what they reported their doctor assessed risk to be (37%). When asked to identify the most important factors related to adjuvant decision making, patients ranked risk of dying from cancer (76%) over severity of possible side effects (43%), chance of having side effects (35%), time required for treatment (24%), and cost of treatment (7%). 49% of patients offered adjuvant therapy believe that treatment reduces the risk of recurrent disease by more than 30% and 25% believe it reduces risk by more than 50%. Among patients receiving or having received adjuvant therapy, 46% completed adjuvant therapy, 17% stopped early due to side effects and 14% recurred while on therapy. Side effects were asymptomatic or mild in 38%, moderate without invasive intervention or hospitalization in 48% severe, requiring hospitalization in 8% and life-threatening in 7%. 22% of patients were told that their side effects would be life-long. Conclusions: Patients with high-risk localized disease estimate their recurrence risk to be higher than what their doctors assess their risk to be. When weighing decisions about adjuvant therapy, patients rank risk of dying from cancer over risks related to toxicity. An overestimation of benefits of adjuvant therapy is noted with one quarter of patients believing that adjuvant therapy will reduce their risk of recurrence by 50 percent or more. The findings highlight the importance of effective communication between patients and providers regarding the risks and benefits of adjuvant therapy to promote an informed and shared decision.
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