D24. Financial Toxicity Associated With Cleft Palate Repair: A Survey of Family Financial Well-being

PURPOSE: Financial toxicity refers to the economic burden of treatment on patients, families, and caregivers of those with chronic medical conditions. METHODS: A survey assessing income, debt, and indicators of financial impact, such as out-of-pocket (OOP) costs, was sent to the parents of patients with cleft palate identified via ICD codes from our institution's electronic medical record. RESULTS: 64 respondents completed the survey. The average total OOP cost was $45,140 (range: $0-$400,000). 11 families (17%) reported that their debt balance had increased following treatment, while only 3 families (5%) reported an improvement in their debt. However, there was no significant association between increased debt balance and increased OOP costs, both within the first two years of treatment after surgery and in total (p=0.40, p=0.86 respectively). 39 respondents (61%) reported that they did not reduce or had a minor reduction in their working hours, while 25 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. 30 respondents (47%) reported a reduction in essential household expenses and 40 respondents (63%) reported a reduction in non-essential spending. CONCLUSION: The cost of cleft palate care has a negative impact on the financial well-being of families. Additionally, legislature currently being developed, including the ELSA Act, will serve to ameliorate OOP costs and therefore the financial burden of treatment for these patients and their families.