American Indian and Alaska Native Accessibility to Comprehensive Cleft Lip and Palate Treatment

Objective : American Indians and Alaska Natives (AI/AN) have the highest incidence of cleft lip and palate (orofacial clefts [OFCs]) when compared to other ethnic groups. We aim to determine the AI/AN populations’ proximity and accessibility to American Cleft Palate-Craniofacial Association accredited centers (ACPA centers) for treatment of OFCs. Our hypothesis is an unacceptable proportion of the AI/AN population lacks reasonable accessibility to ACPA centers and comprehensive craniofacial care. Design : A cross-sectional study of ACPA centers and AI/AN populations were analyzed for possible disparities. Main Outcome Measurements : ACPA centers were mapped using Geographic Information Systems (GIS) and compared with 2018 census population data and 2017 Tribal Census Tract data to visually display possible disparities. Total annual potential pediatric cleft care need for selected high-density AI/AN populated lands were estimated. Results : GIS mapping demonstrates geographical isolation of AI/AN populations from ACPA centers. Two states with high AI/AN populated lands (ND, WY) have no ACPA centers. 47.1% of ACPA centers in high AI/AN populated lands have no craniofacial trained surgeons versus 78.9% craniofacial staffed ACPA centers nationally. The potential unmet cleft and craniofacial care need in selected high-density AI/AN populated lands is 1042 children. Conclusion : AI/AN populations are likely underserved by ACPA centers and by craniofacial fellowship-trained staffed centers. Not addressing OFCs with comprehensive care can lead to worsened outcomes and further marginalization of these children. With future studies, we will be capable of making data-driven, informed decisions to more effectively ensure AI/AN access to comprehensive cleft and craniofacial care.