Down Syndrome Treatment Often Requires Traveling
Access to Down syndrome treatment is uneven across the nation, with a significant number of Americans who have the chromosomal disorder living hours from the nearest specialty clinic, new research suggests.
One in five individuals with Down syndrome must travel at least two hours to reach a dedicated clinic, according to a study published in the March issue of The Journal of Pediatrics.
The specialized clinics feature a multidisciplinary team that often includes a doctor, dietitian, social worker, speech therapist and other clinicians with experience treating individuals with Down syndrome. The expert team works together to address the disorder and co-occurring conditions.
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“We know that Down syndrome specialty clinics improve the health of our patients,” said Brian Skotko, an associate professor of pediatrics at Harvard Medical School who worked on the study. “For the patients with Down syndrome who do not have access to these clinics, fewer than 10 percent are up to date on the most basic health care recommendations from the American Academy of Pediatrics.”
The study looked at more than 64,000 individuals with Down syndrome nationwide and utilized Google Maps to determine how far they would need to travel to reach any one of the 71 Down syndrome specialty clinics in the U.S.
Researchers found that just 37 percent of people with Down syndrome in the South lived within 30 minutes of a specialty clinic. By comparison, 80 percent of people in the Northeast were within a half hour of such treatment.
Skotko said he and his team are working to develop a first-of-its-kind virtual Down syndrome clinic to help address the need for better access to care. The virtual clinic is expected to launch later this year.