Barriers in Accessing Orthodontic Care for Patients with Orofacial Clefts: Insights from a Florida-Based Survey and National Database Analysis

Objective To assess the barriers to obtaining care for patients with orofacial clefts through a survey of Florida-based orthodontists and families and an analysis of the Pediatric Health Information System (PHIS) database. Design A cross-sectional study utilizing multiple-choice questionnaires completed by Florida orthodontists and caregivers of patients who attended a Florida-based cleft and craniofacial clinic. Additionally, data from the PHIS database were analyzed to investigate national factors affecting the age of alveolar bone grafting (ABG). Setting Craniofacial team in Florida Patients/Participants The survey included 39 orthodontists (7.1% response rate) and 48 caregivers (41% response rate) The PHIS study included 1182 patients. Main Outcome Measures Barrier to orthodontic care and age of ABG. Results Orthodontic Survey: Among the surveyed orthodontists, 71% treated cleft/craniofacial patients, 37% accepted Medicaid, and 55% provided pro-bono care. Poor reimbursement was identified as the most common barrier (58%). Caregiver Survey: Most patients were insured by Medicaid (67%), with 55% incurring out-of-pocket expenses. PHIS Database: The average age of ABG was 10.3 years (SD = 3.2). Government funding was associated with a 6.0-month delay in ABG (p = 0.047) and residing in non-Medicaid expanded states was linked to a 6.0-month delay (p = 0.023). Post-Medicaid expansion status was also associated with a delay (p = 0.004) Conclusions Access to oral care is difficult for patients with OFC. Despite both federal and state mandates, many financial and non-financial barriers still exist in accessing orthodontic care and a majority of patients experience significant out-of-pocket expenses despite statutorily mandated insurance coverage.