A team of Penn State researchers was recently awarded a five-year, $3.1 million grant from the U.S. National Institutes of Health (NIH) to evaluate clinical interventions to improve speech communications for people diagnosed with Amyotrophic Lateral Sclerosis, or ALS. The progressive neurodegenerative disease affects nerve cells and slurs speech, among other symptoms.
The three principal investigators — Jimin Lee, associate professor of communication sciences and disorders; Anne Olmstead, assistant professor of communication sciences and disorders; and Navin Viswanathan, associate professor of communication sciences and disorders — will examine how people with ALS and their partners communicate as they develop interventions.
These communication partners, such as spouses or family members, are often caregivers. In a preliminary study, the researchers found evidence that speech intelligibility improves in communicative interactions when compared to other situations.
According to Lee, current interventions often focus on providing speakers with ALS with strategies to improve their own speech.
“We found that existing speech interventions are burdensome and have limited effectiveness, especially with people who have ALS, because as the disease progresses speech declines,” Lee said. “We want to develop another tool that would augment existing interventions to improve their speech communication.”
The team shared that their current NIH project took shape with the help of seed funding from the Social Science Research Institute (SSRI) that was awarded to the current team and Zachary Simons, professor of neurology and humanities, in 2019.
“Seed funding from SSRI brought together this interdisciplinary team of speech-language pathology, cognitive psychology and neurology researchers, and allowed us to obtain critical preliminary data to establish the foundation of holistic intervention techniques for speakers with ALS in conjunction with the communication partners,” Lee said.
The researchers worked with the ALS United Mid-Atlantic to recruit pairs of speakers with ALS and their communication partners from across the eastern half of the country. When the COVID-19 pandemic hit in the spring of 2020, the research team adapted to utilize emerging techniques to collect high quality speech data remotely. This change turned out to be a positive one, allowing the researchers to reach more participants with ALS even after pandemic restrictions eased. In total, they recruited nine pairs for their preliminary work.
“We found that this adaption offered new possibilities in studying those with ALS. A primary advantage was that we could have participants accessing equipment in the comfort of their own homes,” Viswanathan said. “Furthermore, in our proposed research, we will be able to recruit participants who are further along in their disease. These folks are not able to participate in laboratory studies due to mobility issues.”
The researchers said their preliminary data was promising and led to the NIH funding, which will allow the team to recruit more participants to study how people with ALS and their partners communicate and use that information to inform adjustments to current interventions and to develop future ones.
“With this research, we aim to improve daily communications between people with ALS and their partners while reducing the burden on people with ALS to improve speech communication by themselves,” Olmstead said.
The research team said they gratefully acknowledge SSRI and the Department of Communication Sciences and Disorders in the College of Health and Human Development for their support.