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BACKGROUND: The costs associated with repairing craniofacial malformations are significant. The true burden these costs impose on the patient’s family remains unclear. The purpose of this study is to estimate the average out-of-pocket and opportunity costs families incur for repair of a unilateral cleft lip and palate (UCLP), cranial vault, and strip craniotomy reconstruction.
METHODS: 18 consecutive patients treated for UCLP, and 18 consecutive patients with craniosynostosis undergoing cranial vault reconstruction were identified. The families completed a survey eliciting non-traditional and non-monetary costs associated with the care of their child during the first year of life. Hospital billing from the initial Plastic Surgery consultation, procedures, and office visits from a single surgeon were reviewed.
RESULTS: On average, out-of-pocket costs for UCLP were less than for craniosynostosis ($190 v. $1072 p<0.01). Patients with private medical insurance incurred greater total out-of-pocket costs in both groups compared to those enrolled in Medicaid. The average difference was <$100 for all individual costs except surgery for craniosynostosis where the average out-of-pocket cost with private insurance was $1865 versus $82 with Medicaid. Dollar figures are actual patient out of pocket costs and do not reflect insurance reimbursements.
Families reported additional costs in the form of lost wages from surgical procedures, recovery time, clinic appointments, travel costs, and childcare costs. Families’ highest ranked opportunity costs were time lost with siblings, lost personal time, and lost sleep. All families commented that the multidisciplinary team structure minimized the family burden.
CONCLUSIONS: Patients are typically responsible for a fraction of the total cost of treating of a craniofacial abnormality. The type of medical insurance coverage appears to govern out-of-pocket costs. In order to empower families with proper knowledge and expectations, it is crucial we inform them of the additional non-monetary and opportunity costs that are frequently experienced by care givers of the craniofacial patient.