Characterizing Populations Based on Proximity to a Fragile X Syndrome Specialty Clinic

Area of Science:

• Genetics and Rare Diseases
• Public Health and Healthcare Access
• Geographic Information Systems in Healthcare

Background:

• Fragile X syndrome (FXS) necessitates lifelong specialized care.
• Access to FXS specialty clinics is unevenly distributed across the U.S.
• Identifying barriers to care is essential for equitable management.

Purpose of the Study:

• To characterize U.S. populations by proximity to FXS specialty clinics.
• To identify potential barriers to accessing specialized care for FXS.
• To inform strategies for reducing healthcare disparities in FXS management.

Main Methods:

• Utilized Geographic Information System (GIS) software to calculate drive times from census tracts to FXS clinics.
• Analyzed census-based population characteristics in relation to proximity to FXS care centers.
• Compared demographic and socioeconomic factors of populations based on travel time to clinics.

Main Results:

• 36.4% of the contiguous U.S. population lives within a 1-hour drive of an FXS clinic.
• 23.8% of the population resides in a state without an FXS clinic.
• Individuals living further from clinics or in states without clinics were more likely to have lower incomes, disabilities, and lack internet access.

Conclusions:

• Significant geographic disparities exist in access to FXS specialty care.
• Demographic factors correlate with reduced access to FXS services.
• Targeted interventions are needed to improve healthcare access and reduce disparities for individuals with FXS.