Comparing Access Barriers to Orofacial Cleft Care: A Multicenter Study Across Two U.S. Children's Hospitals

Objective This study compared barriers to accessing craniofacial cleft care perceived by parents of children with orofacial clefts. Design Study Type: A cross-sectional multisite survey study was conducted from March 2024 to April 2025. Setting: The craniofacial clinics at Nicklaus Children's Hospital (NCH) and Children's Hospital of Pittsburgh (CHP) Patients/Participants: 172 parents/guardians of children with orofacial clefts (NCH = 99, CHP = 73). Interventions Participants completed a 23-item paper-based survey designed to assess financial, social, geographic, and language barriers to cleft care in their region. Main Outcome Measures Primary outcomes included differences in reported barriers related to insurance coverage, access to specialized services, language support, travel burden, and appointment scheduling difficulties. Results NCH participants were more diverse and had a higher proportion of Hispanic families (81.6% vs 1.4%, P < .0001, X 2 ) and non-English speakers (31% vs 1.4%, P < .0001, X 2 ). CHP families reported higher rates of dual insurance coverage (37% vs 1%, P < .0001, X 2 ) and greater full insurance coverage (86.3% vs 58.2%, P = .0002, X 2 ) compared to NCH. Access barriers were present at both sites with difficulty finding a specialist nearby being the most frequently cited (73.3% NCH and 78.1%CHP). On multivariate logistic regression, the variables more significantly affecting the perception of access barriers were language (Spanish-only Speakers, AOR 3.487, 95%CI 1.118-10.870, P = .031) and participant-patient relationship (Fathers, AOR 4.409, 95%CI 1.375-14.140, P = .013). Conclusion Significant regional differences exist in perceived barriers to cleft care, which suggest that addressing disparities in insurance coverage, language barriers, and specialty service availability would lead to equitable care delivery for children with orofacial clefts.