Abstract
Advances in treatment have resulted in a growing population of more than 375 000 adult survivors of childhood cancer who are at high risk for long-term, treatment-related morbidity requiring ongoing medical surveillance.1 Previous research with the multi-institutional Childhood Cancer Survivor Study (CCSS) revealed that childhood survivors were vulnerable to being uninsured and may be underinsured (ie, inadequate coverage without financial protection).2
Methods
One year after the enactment of the Affordable Care Act provisions,3 we assessed a randomly selected, age-stratified sample of 698 CCSS survivors and 210 siblings4 and assessed insurance coverage characteristics and the impact of underinsurance (cost, worry about health care costs, and the effects of worry on health care access). t Tests and χ2 analyses compared responses of survivors vs siblings and insured vs uninsured survivors. Multivariable logistic regressions compared survivors vs siblings and insured vs uninsured survivors on health care costs, worry, and effects on health care access, adjusting for age, sex, marital status, and chronic health conditions.
All procedures were approved by the institutional review boards of St Jude Children’s Research Hospital and the Massachusetts General Hospital/Partners HealthCare. All study participants had consented prior to be a part of the CCSS cohort at St Jude Children’s Research Hospital.
Results
Among the 89.8% (698) and 92.2% (210) of insured survivors and siblings, respectively (Table 1), survivors had lower rates of employer-sponsored coverage, higher rates of Medicaid, greater difficulty obtaining coverage, and higher rates of being denied coverage; only 14.9% and 11.5%, respectively, rated their health insurance coverage as “fair to poor.” However, survivors reported higher annual out-of-pocket costs than siblings (mean, $2372 vs $1568; P < .01); insured survivors reported higher out-of-pocket costs than uninsured survivors (mean, $2487 vs $1293; P = .003) (data not shown). Survivors were more likely than siblings to borrow money because of medical expenses (odds ratio [OR], 1.84; 95% CI, 1.03-3.28), worry that they would not be able to get a needed medical procedure (OR, 1.80; 95% CI, 1.09-2.98), and not fill a prescription (OR, 1.74; 95% CI, 1.01-3.04) (Table 2). Compared with insured survivors, uninsured survivors were more likely than insured survivors to borrow money because of medical expenses (OR, 3.11; 95% CI, 1.67-5.79), worry about not being able to pay medical bills (OR, 6.21; 95% CI, 3.27-11.77), not have a primary care provider (OR, 12.17; 95% CI, 6.16-24.01), postpone preventive care (OR, 8.28; 95% CI, 4.41-15.55), not get a needed medical test or follow-up (OR, 8.53; 95% CI, 4.59-15.88), and not fill a prescription (30.9% vs 14.1%; OR, 3.31; 95% CI, 1.64-6.69).
