Understanding the Burden of Care for Children With Pediatric Solid Tumors

BACKGROUND: A new solid tumor diagnosis imposes substantial burdens on children and their families. Prior studies have quantified burden using direct medical costs but often exclude indirect costs, logistical stress, and life disruptions. In this study, we quantify burden of care by assessing healthcare utilization and estimating the associated logistical burden during the first year following diagnosis. PROCEDURE: We conducted a retrospective chart review of 166 children (2012-2022) treated within 1 year of an extracranial solid tumor diagnosis at a single institution. We collected data on treatment modalities, healthcare utilization, estimated travel, and job opportunity costs. RESULTS: Altogether, 166 children (55% male, 63% White) with median age at diagnosis 2.2 (IQR 1.1-4.8) years were included. The most common diagnoses were neuroblastoma (41%), retinoblastoma (25%), and nephroblastoma (17%). Sixty-four children (39%) received ≥3 treatment modalities and 75% required tumor resection surgery. Children cumulatively spent a median of 9 days receiving medical care (5-18) at 1 month, 22 (12-35) days at 3 months, 35 (21-68) days at 6 months, and 54 (30-106) days at 1 year. Families traveled a median one-way distance of 79 (35-136) miles. Estimated annual travel costs were $2,079 ($1129-$4267) and lost wages were $15,277 ($7477-$27,101), ∼21% of median household income. Advanced-stage disease was associated with significantly more days spent receiving medical care, longer travel, and greater lost wages. CONCLUSION: We characterize the substantial medical and financial burdens on families of children with solid tumors. Decentralized care delivery, multidisciplinary care models, and policy-level approaches such as expanded insurance coverage may reduce logistical and financial burdens.