Abstract
Wilms tumor (WT) treatment imposes a significant time burden on patients and their families. Time toxicity is a patient-centered metric that quantifies the burden of healthcare interaction. We sought to define time toxicity in the first year after diagnosis of WT and hypothesized that it would increase as tumor stage and treatment intensity increase.
We performed a retrospective review of patients with WT treated at our institution between January 2018 and October 2024. The primary outcome was healthcare contact days within 365 days after diagnosis-divided into Ambulatory (clinic visit, studies) and Institutional (hospitalizations, surgeries, emergency department visits). Associations between stage- and treatment-level variables and contact days were evaluated, and multivariable analyses were performed adjusting for these variables.
Twenty-five patients met the inclusion criteria. Median age at diagnosis was 2.8 years (interquartile range [IQR]: 1.75-4.75). Median healthcare contact days were 22 (IQR: 17.5-32) ambulatory, 15 (IQR: 10-38.5) institutional, and 38 (IQR: 26.5-71) in total. Contact days differed significantly across stages in all categories (p = 0.01, 0.016, 0.009; ambulatory, institutional, and total, respectively). Treatment with radiation significantly increased ambulatory contact days, and treatment with Regimen M significantly increased institutional contact days. After adjusting for stage, the treatment regimen was associated with more total and institutional contact days.
In the first year after diagnosis of WT, families may expect a median of 38 days of healthcare contact. Stage at diagnosis and treatment regimen impact the time burden of care. These findings may inform counseling at diagnosis and support shared decision-making during treatment planning.