Characterizing the burden of care for children with solid tumors in the United States: A cross-sectional analysis from the Child Health Evaluation of Surgical Services Group.

Abstract

The complexity of pediatric solid tumor care has been associated with improved outcomes but has also increased the burden of care for families. This study aimed to understand and quantify the medicalized days experienced by children with solid tumors during the first year after diagnosis, and changes over time, via national population-level data. A retrospective population-based cohort study was performed of children enrolled in a national claims database that tracks health care utilization across medical encounters. Children (aged <18 years) with a solid tumor diagnosis were identified. The number of medicalized days over the first year after diagnosis was quantified. We also compared trends over time. For 5263 children with solid tumors, the median number of medicalized days during the first year after diagnosis was 45 days per child (interquartile range [IQR], 45.0-45.3 days). Children saw a median of three providers (IQR, two to seven providers), and underwent a median of 3.8 surgical procedures (IQR, 3.8-3.9 surgical procedures). Total medicalized days increased significantly across the study period (p < .001). Lost economic productivity for families ranged from 14.4% to 22.3% of household income. Children with solid tumors experience a high number of medicalized days in the first year after diagnosis. Furthermore, the number of medicalized days has increased over the last decade. Quantifying medicalized days provides a way to track the social and economic burdens of care. Better understanding of this care burden may provide an opportunity for physicians, patient advocates, and policymakers to address the financial toxicity of treatment.