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“I thought there would be more I understood”: health insurance literacy among adolescent and young adult cancer survivors

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Abstract

Background

Health insurance literacy is crucial for navigating the US healthcare system. Low health insurance literacy may be especially concerning for adolescent and young adult (AYA) cancer survivors. To describe AYAs’ health insurance literacy, we conducted semi-structured interviews with AYA survivors, on and off of treatment.

Methods

We interviewed 24 AYA cancer survivors (aged 18–39 years) between November 2019 and March 2020. Interviews were recorded, transcribed, and quality-checked. Using two cycles of structured coding, we explored AYAs’ health insurance literacy and examined thematic differences by policy holder status and age.

Results

AYAs were 58.3% female, 79.2% non-Hispanic White, 91.7% heterosexual, and 62.5% receiving cancer treatment. Most participants had employer-sponsored health insurance (87.5%), and 41.7% were their own policy holder. Four themes emerged; in the first theme, most AYAs described beginning their cancer treatment with little to no understanding of their health insurance. This led to the three subsequent themes in which AYAs reported: unclear expectations of what their insurance would cover and their out-of-pocket costs; learning about insurance and costs by trial and error; and how their health insurance literacy negatively impacted their ability to navigate the healthcare system.

Conclusions

Our findings, while requiring confirmation in larger samples and in other health systems, suggest that the health insurance literacy needed to navigate insurance and cancer care is low among US AYA survivors and may have health and financial implications. As the burden of navigating insurance is often put on patients, health insurance education is an important supportive service for AYA survivors on and off of treatment.

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Acknowledgements

We would like to thank the Huntsman Intermountain Adolescent and Young Adult (HIAYA) Cancer Care Program for recruitment support as well as the HIAYA Patient and Family Advisory Board who provided critical and insightful feedback on this project.

Funding

The research reported in this publication was supported by the Huntsman Cancer Foundation and the National Cancer Institute of the National Institutes of Health under Award Number R01CA242729-01, T32CA078447, and P30CA042014. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.

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Authors and Affiliations

  1. Huntsman Cancer Institute, University of Utah, Salt Lake City, UT, USA

    Austin R. Waters, Karely Mann, Perla L. Vaca Lopez, Heydon K. Kaddas, Nicole Ray, Douglas B. Fair & Anne C. Kirchhoff

  2. University of Arizona Cancer Center, Tucson, AZ, USA

    Echo L. Warner

  3. University of Arizona College of Nursing, Tucson, AZ, USA

    Echo L. Warner

  4. Intermountain Healthcare, Salt Lake City, UT, USA

    Tomoko Tsukamoto & Mark A. Lewis

  5. Primary Children’s Hospital, Salt Lake City, UT, USA

    Douglas B. Fair

  6. Massachusetts General Hospital, Boston, MA, USA

    Giselle K. Perez & Elyse R. Park

  7. Department of Pediatrics, University of Utah, Salt Lake City, UT, USA

    Anne C. Kirchhoff

Authors
  1. Austin R. Waters
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  2. Karely Mann
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  3. Echo L. Warner
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  4. Perla L. Vaca Lopez
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  5. Heydon K. Kaddas
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  6. Nicole Ray
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  7. Tomoko Tsukamoto
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  11. Elyse R. Park
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  12. Anne C. Kirchhoff
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Contributions

All authors contributed to project conceptualization and methodology. ARW, KM, PLVL, and ACK were responsible for project administration. ARW, KM, HK, ACK, and ELW were responsible for formal analysis and visualization. ERP and ACK provided supervision. ARW was responsible for writing—original draft. All authors were responsible for writing—review and editing.

Corresponding author

Correspondence to Austin R. Waters.

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Ethics approval

Ethics approval was provided by the University of Utah Institutional Review Board (IRB#00091443).

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All participants participated in the informed consent process prior to participating in the study.

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All data is reported in aggregate and is deidentified; thus, consent to publish was not obtained from participants.

Conflict of interest

The authors declare no competing interests.

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Waters, A.R., Mann, K., Warner, E.L. et al. “I thought there would be more I understood”: health insurance literacy among adolescent and young adult cancer survivors. Support Care Cancer 30, 4457–4464 (2022). https://doi.org/10.1007/s00520-022-06873-2

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  • DOI: https://doi.org/10.1007/s00520-022-06873-2

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