Specialty Care Oases: Utilizing Geographic Information Systems to Evaluate Specialty Care Access for Individuals With Down Syndrome

Down syndrome is a chromosomal condition occurring in about 220,000 individuals in the United States. Previous research showed almost 1 in 5 individuals with Down syndrome in the U.S. face significant geographic obstacles to receiving specialty care. The purpose of this study was to extend this work and learn more about socioeconomic barriers to Down syndrome specialty clinics. We quantified the percentage of the general population in each U.S. state living within a 2-hour drive of a Down syndrome specialty care clinic. We created a Down Syndrome Specialty Care Access Score to quantify access to these clinics utilizing clinical and socioeconomic variables. Nationally, between 56% and 65% of the general population lives within 2 hours of a Down syndrome specialty care clinic. If patients are not allowed to cross state lines to receive medical care, residents in 15 states and the District of Columbia do not have any access to a Down syndrome specialty care clinic. Access is significantly correlated with higher household income and lower rurality scores. The majority of patients with Down syndrome in the United States do not have access to Down syndrome specialty clinics. Innovative usage of technology might be useful in minimizing these disparities in healthcare accessibility.