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.