Measuring the financial stresses of childhood cancer and survivorship.

Abstract

96 G. Dahlman (Children’s Cause for Cancer Advocacy) K. Gallagher (Patient Advocate Foundation) Background: Families battling childhood cancer can face extraordinary financial challenges in access to care. Insurance barriers, coverage limitations and denials, high copays and extraordinary out-of-pocket costs threaten families’ ability to ensure supports necessary for successful treatment. Methods: From April 18, 2017 to May 31, 2017, CCCAA and the Patient Advocate Foundation (PAF) conducted a survey of pediatric cancer patients, caregivers and survivors through an online survey tool. Questions identified demographic and geographic attributes, type of insurance coverage, incidence and reason for insurance denials, degree and source of financial stress, out-of-pocket costs, and survivorship measurements. The survey was sent to unbiased cohort of patients and students from CCCA and PAF. Results: A total of 343 respondents completed the online survey: 143 or 42% were parents or caregivers. Another 143 or 42% were childhood cancer survivors. Among caregivers, 47 or 33% reported insurance denials for treatment, and 63 or 44% reported some level of financial hardship. Among the 44% of respondents reporting financial hardships, 25 or 39% had annual out-of-pocket costs exceeding $5,000. Beyond medical expenses, respondents identified employment and transportation costs, with 87% reporting compromised work schedules and over half reporting trouble getting their child to and from appointments. For survivors, 38 or 27% reported not receiving follow-up care at a late effects clinic, with 34 or 24% reporting that their cancer care impacted their ability to pursue higher education and 43 or 30% reporting that the cost of their medical care impacted their career course or job choice. Conclusions: This joint CCCA/PAF survey identified significant financial challenges, both medical and non-medical, for patients, caregivers and survivors of childhood cancer. This survey along with other data sources suggest that current data and research are insufficient to guide solutions to the care barriers that parents and survivors report.