“Nothing Is as Great a Learning Experience as Getting a $15,000 Bill”: A Mixed-Methods Study of Young Adult Cancer Survivors' Experience With Insurance Coverage
Year: 2025
Type: article
Abstract: PURPOSE: To explore long-term young adult (YA) cancer survivors' experience with health insurance in a post-Affordable Care Act (ACA) era. METHODS: This was a mixed-methods analysis of insurance-related data collected from a cohort of English-speaking YA (currently age 18-39 years) blood cancer survivors, ≥3 years from diagnosis, recruited from six US hospitals as part of a financial navigation interventional study (ClinicalTrials.gov identifier: NCT05620979). Participants completed baseline questionnaires, with a subset participating in semistructured interviews after the 6-month study period. Summary statistics were reported for survey responses. Qualitative interviews were coded using directed content analysis. RESULTS: A total of 130 long-term (median, 10 [IQR, 6-16] years from diagnosis) YA survivors were enrolled, and 45 participated in interviews. Among the total cohort, most (63%) had employer-based private insurance; 22% had public insurance through Medicaid. Eighteen percent reported seeking a new health insurance plan in the past year to afford survivorship care. Over a fifth (23%) reported not knowing how to seek help navigating insurance, while 30% reported delaying or forgoing survivorship care because of not understanding their insurance plan. Four themes emerged from the interviews: (1) Many YA survivors experience insurance churn (ie, moving between plans or between insured and uninsured status); (2) learning to navigate the insurance system is confusing and not straightforward; (3) interactions related to insurance coverage are time-consuming and stressful; and (4) insurance churn and/or out-of-pocket costs affect YAs' ability to receive optimal medical care. CONCLUSION: Ongoing insurance-related challenges persist for YA cancer survivors in a contemporary post-ACA era. Although the ACA has provided essential coverage for many patients, ongoing issues include excessive insurance churn, lack of navigation resources, and the continued financial burden of out-of-pocket costs.
Source: JCO Oncology Practice
DOI: 10.1200/op-24-01075
Institutions: Children's Hospital of Philadelphia, University of Pennsylvania, Tufts Medical Center, Vanderbilt University Medical Center, Columbia University, Seattle Children's Hospital, University of Southern California, Children's Hospital of Los Angeles, USC Norris Comprehensive Cancer Center, The University of Texas MD Anderson Cancer Center
Language: English
Subfield: Economics and Econometrics
Domain: Social Sciences
Open Access status: green
OpenAlex ID: W4411330633