Abstract IA21: Addressing gaps in health insurance literacy among adolescent and young adult cancer patients
Authors: Kirchhoff Anne C. , Mann Karely , Waters Austin R. , Warner Echo L. , Lopez Perla Vaca , Kaddas Heydon K. , Ray Nicole , Tsukamoto Tomoko , Fair Doug , Lewis Mark , Perez Giselle K , Park Elyse R. 
Published: December 2020

Background: Adolescent and young adult (AYA) cancer patients commonly report health insurance concerns and financial burden that emerge due to their cancer treatment. AYAs often have limited experience with health care prior to their cancer diagnosis, which may limit their understanding of health insurance concepts and affect their medical costs. As part of the development of an insurance navigation program, we conducted an evaluation of health insurance experiences, expectations, and literacy among a sample of AYA cancer patients. Methods: Eligible participants were 18-39 years of age with cancer, and currently insured. Participants were recruited in-person and online through a statewide AYA cancer navigation program in Utah. We selected the sample stratified on current age (18-25 and 26-39 years). Participants completed a brief survey and a semi-structured interview. We summarized demographic factors and the Health Insurance Literacy Measure (HILM), a continuous measure ranging from 0-84. The HILM score was examined by age (18-25 vs. 26-39 years) and insurance policy holder (yes vs. no) using t-tests. The semi-structured interviews were recorded, transcribed, and analyzed. Two cycles of inductive coding were applied to open-ended questions regarding health insurance knowledge, areas of confusion, their coverage expectations, and their experiences with medical costs. Results: Of AYA participants, N=13 were 18-25 and N=11 were 26-29 years; participants were female (58%) and Non-Hispanic White (79%), and most had completed at least had some college (92%). Less than half of participants were policy holders for their health insurance (41.7%). Mean HILM score was 55.63 (SD=10.06). There were no differences in the HILM measure by age or policy holder status. Three emergent qualitative themes included: 1) Lack of insurance knowledge affected experiences throughout treatment. While some AYAs understood the basics of their insurance coverage, most were unaware of the specifics of their plan, including how their coverage impacted their out-of-pocket costs. 2) Unclear expectations of health insurance. Most AYA participants were unsure what their health insurance should cover, but at the same time, were surprised about the lack of coverage and high costs. 3) Difficulties navigating coverage and the complexity of the health care system. Most AYAs reported struggled with handling insurance coverage issues, particularly when appeals were necessary to have their health care covered. Conclusions: AYAs with cancer report difficulty navigating the complexities of health insurance and lack understanding about what services their insurance should cover. Education focusing on insurance concepts (e.g., cost-sharing mechanisms such as deductibles) and areas where out-of-pocket costs could be managed (e.g., appeals process, in- vs. out-of-network services) could help AYA cancer patients make more informed health insurance decisions during their cancer treatment.

Citation Format: Anne C. Kirchhoff, Karely Mann, Austin R. Waters, Echo L. Warner, Perla Vaca Lopez, Heydon K. Kaddas, Nicole Ray, Tomoko Tsukamoto, Doug Fair, Mark Lewis, Giselle K Perez, Elyse R. Park. Addressing gaps in health insurance literacy among adolescent and young adult cancer patients [abstract]. In: Proceedings of the AACR Virtual Conference: Thirteenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2020 Oct 2-4. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(12 Suppl):Abstract nr IA21.