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Simpson College Professor of Mathematics Heidi Berger and a renowned research team, including three Simpson students, have published a manuscript titled “Health care satisfaction and medical literacy habits among caregivers of individuals with Down syndrome” in the American Journal of Medical Genetics Part C.
Simpson students Kenneth Norris ’25, Katelyn Smith ’25 and Allison Young ’24 contributed to the article — the third published in a medical journal by Berger’s research group and the sixth peer-reviewed publication co-authored by undergraduate students in Simpson’s Bryan Summer Research Program.
"I’m very excited about this collaboration,” said Berger. “I’m especially proud of the contributions from Kenneth, Katelyn, and Allison who completed the bulk of this work as first or second year undergraduates at Simpson. Research is not an easy process, and they exhibited a great deal of perseverance and integrity from start to finish.”
The main takeaways of the article include:
- Current health care options are not meeting the needs of many individuals with Down Syndrome in both the U.S. and Mexico.
- Caregivers of loved ones with Down Syndrome expressed frustrations with the inaccessibility and inapplicability of health care information.
- Most caregivers in the U.S. and Mexico believe it is not easy to find answers to medical questions about their loved ones with Down Syndrome, in part because the volume of information is overwhelming, given their limited medical background.
- Online platforms such as Down Syndrome Clinic to You with customized, specific health information related to Down Syndrome could offer innovative solutions to these unmet needs for families and primary care providers.
Berger served as the first author, with Brian Skotko, Emma Campbell Endowed Chair on Down Syndrome at Massachusetts General Hospital as the senior author. They were joined by co-authors Jill Wittman, a research market analyst; Kenneth Norris, Katelyn Smith, and Allison Young, undergraduate researchers at Simpson; Nora Horick, a biostatistician at Massachusetts General Hospital; Javier Magana Gomez, an accomplished researcher in nutrition at the Universidad Autonoma de Sinaloa in Mexico, and Kenia Kristel Esparza Ocampo, a master’s degree student at the Universidad Autonoma de Sinaloa in Mexico.
Find the article citation below.
Berger, H., Wittman, J., Smith, K., Horick, N., Norris, K., Young, A., Magana Gomez, J., Ocampo, K. K. E., & Skotko, B. G. (2023). Health care satisfaction and medical literacy habits among caregivers of individuals with Down syndrome. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, e32074. https://doi.org/10.1002/ajmg.c.32074