Baseline Characteristics of Parents Enrolled in Children's Oncology Group Study ACCL20N1CD: Financial Toxicity During Treatment for Pediatric Acute Lymphoblastic Leukemia in the United States.

Abstract

Background: Costs to parents and associated financial distress may contribute to observed health disparities in pediatric oncology. We describe financial distress in a cohort of parents with children newly diagnosed with acute lymphoblastic leukemia (ALL) and identify factors contributing to high financial distress.

Procedures: Settings were 28 Children's Oncology Group practices in the National Cancer Institute Community Oncology Research Program. We included English- or Spanish-speaking parents of children with newly diagnosed ALL. Analyses focused on baseline surveys completed by parents during their child's ALL induction therapy. Survey items asked about socio-demographics, household material hardships, financial burden, financial distress, and financial coping behaviors.

Results: The cohort included 104 parents. Most were female (87; 83.7%), White (68; 65.4%), non-Hispanic (50; 48.1%), and paid for their child's care with Medicaid or CHIP (60; 57.7%). Financial burden totaled greater than 15% of monthly gross household income for half (54, 51.5%), and 45 (43%) indicated high financial distress (score 1-4). Prevalent coping behaviors with health implications included cutting back on groceries (62, 59.6%) or other necessities (61, 58.7%). Parents who had poverty-level income (p = 0.0009), paid with Medicaid or CHIP (OR 3.0 [CI: 1.26, 7.13], p = 0.01), were unemployed (OR 2.5 [CI: 1.1, 5.7], p = 0.04), or lived where more than 50% of residents had socioeconomic disadvantages (OR 3.0 [CI: 1.13, 8.05], p = .03) were more likely to indicate high financial distress than others.

Conclusions: During their child's ALL induction therapy, sizeable proportions of parents exhibited high financial burdens, high levels of financial distress, and multiple financial coping behaviors with health implications.