Patients’ priorities in selecting chronic lymphocytic leukemia treatments

Cancer patients carry rising burdens of health care-related out-of-pocket expenses, and a growing number of patients are considered "underinsured." Our objective was to describe experiences of insured cancer patients requesting copayment assistance and to describe the impact of health care expenses on well-being and treatment. We conducted baseline and follow-up surveys regarding the impact of health care costs on well-being and treatment among cancer patients who contacted a national copayment assistance foundation along with a comparison sample of patients treated at an academic medical center. Among 254 participants, 75% applied for drug copayment assistance. Forty-two percent of participants reported a significant or catastrophic subjective financial burden; 68% cut back on leisure activities, 46% reduced spending on food and clothing, and 46% used savings to defray out-of-pocket expenses. To save money, 20% took less than the prescribed amount of medication, 19% partially filled prescriptions, and 24% avoided filling prescriptions altogether. Copayment assistance applicants were more likely than nonapplicants to employ at least one of these strategies to defray costs (98% vs. 78%). In an adjusted analysis, younger age, larger household size, applying for copayment assistance, and communicating with physicians about costs were associated with greater subjective financial burden. Insured patients undergoing cancer treatment and seeking copayment assistance experience considerable subjective financial burden, and they may alter their care to defray out-of-pocket expenses. Health insurance does not eliminate financial distress or health disparities among cancer patients. Future research should investigate coverage thresholds that minimize adverse financial outcomes and identify cancer patients at greatest risk for financial toxicity.

With increasing frequency, patients are being asked to make complex decisions about cancer screening, prevention, and treatment. These decisions are fraught with emotion and cognitive difficulty simultaneously. Many Americans have low numeracy skills making the cognitive demands even greater whenever, as is often the case, patients are presented with risk statistics and asked to make comparisons between the risks and benefits of multiple options and to make informed medical decisions. In this commentary, we highlight 10 methods that have been empirically shown to improve patients' understanding of risk and benefit information and/or their decision making. The methods range from presenting absolute risks using frequencies (rather than presenting relative risks) to using a risk format that clarifies how treatment changes risks from preexisting baseline levels to using plain language. We then provide recommendations for how health-care providers and health educators can best to communicate this complex medical information to patients, including using plain language, pictographs, and absolute risks instead of relative risks.