KCCure, Alexandria, VA
Dena Battle , Cristiane Decat Bergerot , Pavlos Msaouel , Eric Jonasch , Tian Zhang , Daniel J. George , Michael D. Staehler
Background: In metastatic renal cell carcinoma, the systemic therapy landscape has expanded to include multiple VEGF inhibitors, immunotherapies, and combination therapy. Little is known about patient expectations and preferences when making decisions about systemic therapy. We sought to gather independent data from online kidney cancer patient communities to assess patient perspectives on what matters most when considering treatment options. Methods: The KCCure online survey was performed between August 1, and September 30, 2019. Patients were recruited via the KCCure website, social media channels (Twitter, Facebook) and through fliers distributed at cancer centers. Those who agreed to participate were surveyed for demographics (age, gender, race, income, country) and clinical characteristics (date of the diagnosis, disease stage, treatment history). Key questions focused on treatment selection and side effect management. Results: Out of 1,136 patients responding, 411 patients were on systemic therapy with a median age of 57 years (range 28-86). 223 (54%) of patients on systemic therapy were male. Patients were primarily from the U.S. (83%). Median duration on therapy was 24.7+/- 1.9 months. When asked to select the most important outcome for treatment selection, 58.8 % of patients chose complete response, followed by tumor control (10.2%), low risk of toxicity (5.7%) and the chance to discontinue therapy (3.7%). Patients ranked cost as the least important factor in selecting treatment (2.9%). 10.9% preferred infusion therapy and 42.1% oral therapy, whereas 47% were indifferent about the route of administration. Even if it would be safe to discontinue therapy, 62.8% of patients would be anxious about cancer progression. 23.2% would rather stay on treatment and 39.3% would want increased scanning intervals. Only 34.4% of patients would look forward to having more time off therapy. When asked to define treatment success, 86.3% selected reduction in tumor size, followed by stable disease (71.7%), freedom from symptoms (35.1%) and better quality of life (47.7%). Conclusions: Patients rank efficacy as the most important outcome when considering treatment options. Toxicity, time off therapy and cost are not significant priorities for patients. Further data is warranted investigating the impact of communicating treatment options, potential discontinuation of therapy and resulting expectations.
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