Time Toxicity: Quantifying Healthcare Utilization Attributable to Pediatric Home Ventilation.

Abstract

Objective: Determine the "time toxicity," or time burden patients experience when pursuing health-related interventions, of pediatric invasive home ventilation.

Study design: Retrospective chart review.

Methods: We identified all patients from a single neonatal intensive care unit who received a tracheostomy with/without home ventilation (T + /-HV) from 2016 to 2024. After matching the gestational week distribution of this cohort, five controls were randomly selected for each T + /-HV patient. Healthcare encounters in the electronic medical record were compared for the cohort versus controls. All encounters on a single calendar day were counted as 1 day of healthcare utilization.

Results: We identified 62 patients with T + /-HV and 310 controls. Mortality was 35.5% among the T + /-HV cohort and 9% among controls. Median inpatient hospitalizations (7.0 vs. 2.0), total healthcare encounters (64.0 vs. 15.5), days of healthcare utilization (296 vs. 46), and healthcare utilization ratio (0.4 vs. 0.1) were all significantly higher for the T + /-HV cohort compared with controls. Differences were greatest in the first year of life. Among survivors in the T + /-HV cohort, decannulated patients had significantly greater healthcare utilization than those not decannulated.

Conclusions: This proof-of-concept analysis quantified "time toxicity" for pediatric invasive home ventilation and demonstrated that neonates who receive a tracheostomy during their initial admission spent over half of all days in their first 2 years of life interacting with the healthcare system. "Time toxicity" could add objective information to better prepare families for what life looks like with a child using a ventilator at home.