J Craniofac Surg. 2025 Apr 15. doi: 10.1097/SCS.0000000000011389. Online ahead of print.
ABSTRACT
BACKGROUND: Financial toxicity refers to the economic burden of treatment on patients, families, and caregivers of those with chronic medical conditions. The authors sought to add to the literature regarding the financial burden on families with children undergoing cleft palate reconstruction.
METHODS: A survey assessing income, debt, and other indicators of financial impact, such as out-of-pocket (out of pocket) costs, was sent to the parents of patients who had cleft palate repair at age 18 or younger identified through CPT codes from the authors’ institution’s electronic medical record.
RESULTS: One hundred eighty-six began the survey; however, only 64 (9%) respondents completed the survey and were included in the statistical analysis. The average total out-of-pocket cost was $45,140 (range: $0-$400,000). Eleven respondents (17%) reported that their debt balance had increased after treatment, whereas only 3 respondents (5%) reported an improvement in their debt. However, there was no significant association between increased debt balance and increased out-of-pocket costs. Twenty-five respondents (39%) reported a reduction in their working hours. Over half (53%) reported that they and their partner missed more than 3 weeks of work cumulatively throughout their child’s treatment. Thirty respondents (47%) reported a reduction in essential household expenses and 40 respondents (63%) reported a reduction in non-essential spending.
CONCLUSIONS: Costs associated with cleft palate care results in significant financial toxicity for families of children with cleft palate. Pending legislation, including the Ensuring Lasting Smiles Act, could ameliorate out-of-pocket costs and reduce financial toxicity for cleft patients and their families.
PMID:40233308 | DOI:10.1097/SCS.0000000000011389
