Abstract

Abstract BACKGROUND Costs associated with cancer treatments in the United States continue to rise as new therapies are approved. Financial toxicity describes both the quantifiable costs associated with cancer as well as the distressful effects related to the costs of treatment. METHODS The goal of this study is to better understand the financial burden of oral chemotherapies on patients with primary brain tumors from their perspective. Following one cycle of oral chemotherapy, we contacted patients per IRB-approved protocol to participate in a 20-question survey (COST-FACIT and other questions relevant to insurance and cost). With descriptive statistics, we summarized survey responses overall and within strata defined by on-label or off-label oral medication use. RESULTS Sixty surveys were completed (58 total patients; 2 completed surveys for a second treatment). Most surveys (n = 53, 88%) reflected on-label therapy use, with only 7 patients (12%) on off-label therapies. The mean overall financial toxicity score was 23.1 (range: 1 – 44); the lower the financial toxicity score, the greater the financial distress of study participants. When asked if their provider discussed treatment cost before initiation, 21 patients (35%) stated that they did, and 39 patients (65%) said they did not discuss cost or did not recall a discussion. However, in the off-label therapies cohort, all 7 patients stated that their provider discussed cost before prescribing. Majority of surveys (70%) noted patient copays associated with these medications. Nine patients (17%) in the on-label group and three patients (43%) in the off-label group had chemotherapy-associated costs that caused negative effects on quality of life. CONCLUSIONS Although the groups are disproportionate, a higher percentage of financial distress occurred in the off-label therapy group. While cost discussions are challenging, they remain an important part of therapy initiation that may decrease undue stress; this will be an area of improvement.

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