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Time Toxicity: Quantifying Healthcare Utilization Attributable to Pediatric Home Ventilation.
Emily D Johnson1, Renee D Boss2,3, Woo Yeon Park4
1Department of Nursing, Johns Hopkins Hospital, Baltimore, Maryland, USA.
Pediatric patients requiring invasive home ventilation face significant "time toxicity," spending over half their early life in healthcare interactions. This study quantifies the substantial time burden associated with home ventilation for children.
Area of Science:
- Pediatric critical care medicine
- Health services research
- Patient-reported outcomes
Background:
- Pediatric invasive home ventilation is a complex intervention for infants with severe respiratory conditions.
- Quantifying the non-medical burden, termed "time toxicity," is crucial for understanding the holistic impact on families.
- Previous research has not comprehensively measured the healthcare utilization time associated with pediatric home ventilation.
Purpose of the Study:
- To determine the
- time toxicity,
- or time burden, experienced by pediatric patients requiring invasive home ventilation.
- To compare healthcare utilization between pediatric patients with tracheostomy with/without home ventilation and matched controls.
- To provide objective data to aid families in preparing for the demands of home ventilation.
Main Methods:
- Retrospective chart review of patients from a single neonatal intensive care unit (2016-2024).
- Inclusion of patients who received a tracheostomy with/without home ventilation (T+/-HV).
- Matched controls were selected based on gestational week distribution; healthcare encounters were compared.
Main Results:
- The T+/-HV cohort (62 patients) had significantly higher mortality (35.5%) than controls (9%).
- Median healthcare encounters (64.0 vs. 15.5) and days of utilization (296 vs. 46) were substantially greater in the T+/-HV cohort.
- Healthcare utilization differences were most pronounced in the first year of life, with survivors showing higher utilization if not decannulated.
Conclusions:
- This study quantifies "time toxicity" for pediatric invasive home ventilation, highlighting a significant healthcare burden.
- Neonates receiving a tracheostomy spent over half of their first two years interacting with the healthcare system.
- Objective data on "time toxicity" can better prepare families for the realities of home ventilation care.
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