Most patients with renal cell carcinoma (RCC) initially present with localized disease that is curable with surgery. Unfortunately, 20% to 40% of those with localized primary tumors will develop metastatic disease. Although numerous therapeutics are available for the management of metastatic RCC, studies testing these agents in the adjuvant setting have shown limited results. Only 2 out of 10 trials met their primary end point, resulting in Food and Drug Administration approval for adjuvant sunitinib and adjuvant pembrolizumab.^1,2 However, 8 trials testing similar agents in similar populations failed to show evidence of clinical benefit for patients. The conflicting nature of currently available information amplifies the need for improved patient selection criteria and cautious communication with patients in this setting.

Treatment decisions need to be based on anticipated benefit, toxicity risk, and patient goals and values. Understanding how patients perceive the risks and benefits of their diagnosis and potential therapy are key to optimizing counseling and education. To better assess patient perceptions, a survey was developed by KCCure (the Kidney Cancer Research Alliance), with multidisciplinary representation from urological surgeons, medical oncologists, and patient advocates. The survey was broadcast between July 2022 and September 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 III RCC at initial diagnosis.

At a median age of 57 years, 113 patients were offered adjuvant therapy by the treating physician and 74 patients received adjuvant therapy, mainly immunotherapy (82%). Patients assessed their average personal risk of recurrence to be 47%, which is 10% higher than what they reported their doctor reported their risk would be (Figure 1). When asked about the most important factor in selecting adjuvant therapy, patients overwhelmingly selected the risk of dying from cancer (76%) as most important. The severity of side effects was next (43%) followed by the chance of having side effects (35%). The time required for treatment (24%) and the cost of treatment (7%) were the least important factors (Figure 2). Patients greatly overestimated the benefit that adjuvant therapy offers. Nearly half (49%) of patients believe that treatment reduces the risk of recurrent disease by more than 30%, and 25% believe it reduces risk by more than 50%. The majority of patients reported experiencing side effects, asymptomatic or mild in 38%, moderate without invasive intervention or hospitalization in 48%, severe requiring hospitalization in 8%, and life-threatening in 7%. Eighteen percent of patients were told that their side effects would be lifelong.

Figure 1. Patient-reported risk estimation by stage.

Figure 2. Factors impacting patients’ decision on adjuvant therapy. SE indicates side effects.

Results from this survey indicate that patients with high-risk localized disease estimate their recurrence risk to be higher than their doctor’s. When weighing decisions about adjuvant therapy, patients rank risk of dying from cancer over risks related to toxicity. Patients significantly overestimate the benefit of adjuvant therapy. One-quarter of patients believe that adjuvant therapy will reduce their risk of recurrence by more than 50%, which is in sharp contrast to the 9% absolute risk reduction shown in the KEYNOTE 564 trial.¹ Even a 30% reduction in recurrence risk at any landmark time point would be impossible to achieve under any baseline risk with surveillance assuming a disease-free survival hazard ratio of 0.63 (95% CI 0.5 to 0.8) in favor of adjuvant pembrolizumab noted in KEYNOTE 564.³ These findings highlight important gaps in how patients and providers may view risks and benefits. This information is especially crucial in the context of adjuvant care, where the current environment is rife with overtreatment. Understanding that these gaps exist can help improve the quality of patient-provider communication in the adjuvant setting.