Financial Toxicity for Caregivers of Pediatric Patients With Long-Term Tracheostomies

Abstract

Objective: To assess financial toxicity experienced by caregivers of children with long-term tracheostomies.

Methods: Cross-sectional survey study with comparison group conducted at a tertiary pediatric hospital and outpatient clinic. Pediatric (<18 years) patients with tracheostomies for ≥12 months were recruited for the study. Patients who underwent tympanostomy tube placement or adenotonsillectomy were recruited as controls. Eligible patients' caregivers were contacted to fill out a questionnaire including the validated Comprehensive Score for Financial Toxicity survey.

Results: Surveys were completed for 72 patients, including 31 in the study group (mean age, 6.58 years, 95% confidence interval [CI], 4.85-8.30 years) and 41 controls (mean age, 6.42 years, 95% CI, 5.15-10.52 years) (P = .864). The mean duration of tracheostomy was 3.98 years (95% CI, 2.91-5.05 years). The mean household income and education level were lower in the study group than in the control group. Caregivers of the study group were more likely to have public health insurance or be uninsured. Caregivers of study patients reported greater financial toxicity, with a lower mean Comprehensive Score for Financial Toxicity (18.23 [95% CI, 15.20-21.25]) than caregivers of controls (34.27 [95% CI, 32.05-36.49]; P < .001). Linear regression analysis showed that survey scores were lower for caregivers who employed home nursing care (P < .001).

Conclusion: Caregivers of pediatric patients requiring long-term tracheostomies experience greater financial toxicity than caregivers of pediatric patients who have typical otolaryngologic surgery.

Keywords: caregiver burden; financial toxicity; patient-reported outcomes; pediatric; tracheostomy-dependent.