Long-Term Outcomes of Tracheostomy-Dependent Children

Objective: To estimate the 1-, 5-, and 10-year survival and decannulation rates of children with a tracheostomy. Study Design: Ambidirectional cohort. Setting: Tertiary children's hospital. Methods: All patients (<18 years) that had a tracheostomy placed between 2009 and 2020 were included and followed until 21 years of age, decannulation, or death. The Kaplan-Meier method estimated cumulative probabilities of death and decannulation. Results: A total of 551 children underwent tracheostomy at a median age of 7.2 months (interquartile range [IQR]: 3.8-49.2). Children were followed for a median of 2.1 years (IQR: 0.7-4.2, range 0-11.5). The cumulative probability of mortality at 1 year was 11.9% (95% confidence interval [CI]: 9.4-15.1), at 5 years was 26.1% (95% CI: 21.6-31.3), and at 10 years was 41.6% (95% CI: 32.7-51.8). Ventilator dependence at index discharge (hazard ratio [HR]: 2.04, 95% CI: 1.10-3.81, p =.03), severe neurologic disability (HR: 2.79, 95% CI: 1.61-4.84, p <.001), and cardiac disease (HR: 1.69, 95% CI: 1.08-2.65, p =.02) were associated with time to death. The cumulative probability of decannulation was 10.4% (95% CI: 8.0-13.5), 44.9% (95% CI: 39.4-50.9), and 54.1% (95% CI: 47.4-61.1) at 1 year, 5 years, and 10 years, respectively. Ventilator dependence (HR: 0.43, 95% CI: 0.31-0.60, p <.001), severe neurologic disability (HR: 0.20, 95% CI: 0.14-0.30, p <.001), and tracheostomy indicated for respiratory failure (HR: 0.68, 95% CI: 0.48-0.96, p =.03) correlated with longer decannulation times. Conclusion: After tracheostomy, estimated mortality approaches 42% by 10 years and decannulation approaches 54%. Children with ventilator support at discharge and severe neurological disability had poorer long-term survival and longer times to decannulation.