Perceptions of health care and insurance needs among survivors of childhood cancer and experts in survivorship care

We conducted semi-structured interviews with adult survivors of childhood cancer and cancer care experts in the United States to explore viewpoints on health needs and barriers to insurance utilization to develop a literacy improving program. We conducted qualitative thematic analysis and used an inductive-deductive approach to organize findings in accordance with Aday & Andersen's conceptual model of access to medical care. From June-October 2019, we interviewed 11 survivors and 40 experts. Survivors and experts identified gaps in survivors' health insurance literacy contributing to their avoidance of healthcare and underuse of insurance benefits along with pitfalls of health care delivery and insurance coverage. Experts and survivors of childhood cancer agreed on health care and insurance coverage needs of survivors. Low health care and insurance literacy present an urgent target for intervention informed by study findings.