Exploring caregiver burden and financial toxicity in caregivers of tracheostomy-dependent children

Objective: Measure the prevalence of and factors associated with financial toxicity (FT) and caregiver burden in families of tracheostomy-dependent children. FT is defined as the objective and subjective patient-level impact of the costs of medical care and has been associated with lower quality of life, decreased compliance with treatment, and increased mortality. Methods: A medical record review was performed on all children with a tracheostomy tube placed from 2009 to 2018 at a tertiary children's hospital to identify and include children younger than 18 years old, not deceased, and not decannulated at the time of review. Eligible children's caregivers were contacted to fill out a 36-item questionnaire and three validated instruments: The Comprehensive Score for Financial Toxicity (COST) and the Financial Distress Questionnaire (FDQ), both addressed to the parent/primary caregiver, and the Burden Scale for Family Caregivers - short version (BSFC-s). Results: Of the 140 eligible tracheostomy patients identified, 45 caregivers (32.1%) returned the survey. The average COST score was 18 +/- 1.7 with 73.3% of caregivers reporting high toxicity based on FDQ, and 75.6% having severe-to-very severe caregiver burden. Significant increase in FT was seen in households where an adult had to leave a paid position (p = 0.047) or work less (p = 0.002) because of their child's condition; or needed to omit some of the child's medical services or medications due to cost-prohibitive reasons (p<0.001). Financial toxicity was associated with caregiver burden (by BSFC-s) [r = -596; beta coefficient = -0.95, t(43) = -4.87, p<0.001] and financial distress (by FDQ; p<0.001). Conclusion: Caregivers of children with medically complex, tracheostomy-dependent conditions suffer from FT and caregiver burden. As a result, harmful financial coping mechanisms such as missing necessary care components or forgoing prescribed treatments, may be adopted for cost-prohibitive reasons.