UNIVERSITY PARK, Pa. — A new $3.3 million grant from the National Institute on Deafness and Other Communication Disorders (NIDCD) will enable a team of researchers at Penn State to study specific characteristics of individuals with Down syndrome that contribute to swallowing and speech outcomes with the goal of developing interventions tailored to the needs of this population.
Individuals with Down syndrome are at increased risk of choking on food or drink, which can lead to pneumonia, hospitalization and other complications. Additionally, parents report that up to 95% of individuals with Down syndrome have difficulty making their speech understood to people outside their immediate social circle. This has implications for individuals’ ability to self-advocate and participate in social, vocational and educational aspects of their lives.
“This research aims to inform, not only our understanding of mechanisms in Down syndrome, but practices to better serve individuals with Down syndrome in speech, language and swallowing interventions where their needs have not previously been met,” said Krista Wilkinson, distinguished professor of communication sciences and disorders at Penn State, and primary investigator on the grant.
Current interventions for swallowing and speech therapy were largely developed for individuals who do not have Down syndrome. Because individuals with Down syndrome may have specific characteristics related to their facial and neck structure, and differences in other abilities and physical features, existing interventions may not be as effective for this population.
Throughout the study, researchers will work with 40 participants, ranging in age from 18-30, over a five-year period using an individual-differences approach. This will allow investigators to look at how and why individual study participants differ from one another. The team will also use a statistical approach that evaluates data as it is available and, combined with prior information, informs research questions as the study progresses; this expertise is offered by biostatistician consultant, Jacquie Mogle.
Wilkinson noted the unique qualifications across the team of researchers working on this project, stating, “Each person has a specific role and brings expertise that will be well matched to the skills of our participants.” In addition to Wilkinson, the research team includes seven other faculty members in Penn State’s Department of Communication Sciences and Disorders, including Aarthi Madhavan, Nicole Etter, Ji Min Lee, Carol Miller, Anne Olmstead, Chaleece Sandberg and Diane Williams.
Madhavan, assistant professor of communication sciences and disorders, is a clinician with expertise in swallow disorders, and Etter, associate professor of communication sciences and disorders, brings expertise in the areas of motor speech and oral somatosensation — an individual's ability to sense touch and texture and relative position of their tongue. Together, they will study how oral somatosensation may relate to swallowing outcomes in individuals with Down syndrome.
Lee, associate professor of communication sciences and disorders, brings expertise as a speech scientist, Miller, professor of communication sciences and disorders, brings expertise in language development, and Olmstead, assistant professor of communication sciences and disorders, brings expertise in speech perception and speech in context. They will work together to study speech production and intelligibility in study participants.
Sandberg, associate professor of communication sciences and disorders, will bring her practical MRI expertise to the study, and Williams, department head and professor of communication sciences and disorders, who has worked in imaging individuals with autism, will bring her expertise in adapting imaging for individuals with developmental disabilities. The researchers will use magnetic resonance imaging to understand how changes or differences in the brain relate to behavioral differences related to speech and swallowing.
Wilkinson and her team hope to offer individuals with Down syndrome, and their clinical service providers, additional resources and support to empower persons with Down syndrome to participate in desired and meaningful activities, self-advocate and live full lives. Wilkinson said, “When you put the right supports and structures into place, people with Down syndrome can do so much, and it’s on us to make that support available.”