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.