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Simpson College researchers publish findings on barriers to Down syndrome specialty care

Research published in American Journal of Medical Genetics


A group of Simpson College researchers is working to shine light on the barriers to specialty care faced by people with Down syndrome.

Professor of Mathematics Heidi Berger, senior mathematics and computer science double-major Emily King and 2021 graduate Mason Remington co-authored an article titled “​​Family perspectives on gaps in health care for people with Down syndrome” in the American Journal of Medical Genetics.

The study found a disconnect between what families of patients with Down syndrome expect from a specialty clinic versus the services actually promoted by those clinics.

“The gap between expectation and reality, along with geographical challenges, constitute barriers to care for a significant percentage of the population,” Berger said. “We hope the findings in this study can help guide the decision-makers at Down syndrome specialty clinics to better allocate resources in a time of increasing healthcare costs and financial scrutiny.”

The study found that families of individuals with Down syndrome place a high value on mental health services therapies, developmental specialists, dietitians and educational advocates. 

But those aren’t the services widely promoted to the target audience. 

Lack of clear advertisement, lack of awareness of specialty clinics and travel time create significant barriers to care. Those barriers become even more significant in low-income communities.

Berger co-authored a similar article in 2020. 

That study found that more than 20% of people with Down syndrome in the United States face geographic barriers to specialty care. Berger collaborated with Simpson College alumnus Nick Joslyn ’18 and Harvard Medical School associate professor of pediatrics Brian Skotko to publish “Geospatial Analyses of Accessibility to Down Syndrome Specialty Care” in the Journal of Pediatrics. 

Funding for the research was provided by the Hal and Greta Bryan Summer Research Program at Simpson College. Research took place in 2018 and 2019. 

About Simpson College
Simpson College is a private, liberal arts college located in Iowa with campuses in Indianola, West Des Moines and online. Founded in 1860, the college has 1,078 undergraduate and graduate students. Simpson offers 75 majors, minors and programs in addition to three graduate programs. Outside of the classroom, Simpson is a member of the NCAA Division III American Rivers Conference, hosts eight Greek houses on campus and sponsors many extracurricular options for student involvement.
Contact Information
Bryan Geelan, marketing communication director
Direct: 515-961-1608
Email: bryan.geelan@simpson.edu