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

Abstract

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. A cross-sectional study of ACPA centers and AI/AN populations were analyzed for possible disparities. 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. 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. 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.

Epidemiologic Trends of Cleft Lip and Palate in a Southern State: A 30-Year Follow-Up

“…Typically, the American Indian and Alaska Native population has the highest rates of any facial cleft in the United States. 1,4,48 This population is captured in other races, as reported by the MSDH, and had an overall incidence of congenital anomalies that was three times higher than the average population rate, which corroborates our own findings. Interventions to address these discrepancies could begin with more accurate tracking of race and ethnicity by the MSDH.…”

“…The reservation for the Mississippi Band of Choctaw Indians is located in the central region, and across the state, American Indians make up 0.6% of the population. Typically, the American Indian and Alaska Native population has the highest rates of any facial cleft in the United States 1,4,48 . This population is captured in other races, as reported by the MSDH, and had an overall incidence of congenital anomalies that was three times higher than the average population rate, which corroborates our own findings.…”

Revealing a Cleft in the Community: A Systematic Review of Sociodemographic Disparities Affecting the Care of Patients With Cleft Lip

“…11 Furthermore, a recent geospatial study demonstrated that 47.1% of American Cleft Palate Craniofacial Association (ACPA) accredited centers situated in areas highly populated by American-Indian or Native American people were not staffed by craniofacial surgeons, compared to just 21.1% of ACPA centers nationwide. 12…”

“…One study demonstrated disparities in access to care specifically for Native-American or American-Indian patients. 12 However, it is important to note that this racial group was rarely included independently and was often combined with other racial groups due to a small sample size. As a result, it is possible that disparities for this racial group may be more prominent than reported in the literature.…”

“…11 Furthermore, a recent geospatial study demonstrated that 47.1% of American Cleft Palate Craniofacial Association (ACPA) accredited centers situated in areas highly populated by American-Indian or Native American people were not staffed by craniofacial surgeons, compared to just 21.1% of ACPA centers nationwide. 12 Two other studies demonstrated that white patients had better access to care compared to other races. In their retrospective, single-center study including 473 patients with CL/P, Wagner et al examined health disparities before and after implementation of a cleft nurse navigator (CNN).…”