Geographic proximity to Down syndrome specialty clinics for individuals born with Down syndrome, 1999–2020 in Texas

BACKGROUND: While effective national clinic networks exist for a select few conditions, the availability and use of multidisciplinary specialty care for most genetic or congenital conditions, including Down syndrome (DS), remain uneven. This uneven distribution creates significant geographic and social gradients in healthcare access. To understand these differences within a geographically expansive and socio-demographically diverse setting, this study quantified travel burden to pediatric DS specialty clinics in Texas, identifying differences based on key maternal socio-demographic and geographic factors. METHODS: A cross-sectional analysis of 8,201 individuals with DS presumed living and 477 deceased individuals with DS born between 1999-2020 from the Texas Birth Defects Registry was performed. One-way driving time and distance along the road networks from the maternal residence to the nearest seven pediatric DS specialty clinics were calculated using ArcGIS Pro. Travel burden was analyzed by maternal race/ethnicity, education, age and residence at delivery. Travel burden measures were categorized as low, moderate to high, and very high. RESULTS: Among 8,678 live‑born individuals with DS, 45% resided over 90 miles from the closest in-state DS specialty clinic, and 41% faced one‑way driving times exceeding two hours. Those born to mothers in border counties experienced the greatest travel burden, with median one-way driving times exceeding 7 hours. Rural residents had a four times greater travel burden than urban residents. Individuals born to Hispanic mothers traveled twice as far as those born to non-Hispanic mothers. Residents of high‑poverty tracts had a median one-way distance of approximately 150 miles, triple the 35 miles seen in low‑poverty tracts. CONCLUSION: Our findings suggest that substantial travel burden to DS specialty clinics exists in Texas, affecting individuals with DS born to Hispanic and younger mothers, as well as those in rural, border, and concentrated-poverty regions. Further research is needed to explore life course residential history and clinic utilization to address these differences.