Research at the Swallowing & Communication Collaborative

As many as 92% percent of persons diagnosed with ALS develop swallowing impairments over the course of the disease, which have been linked to aspiration pneumonia and malnutrition and have been found to have negative prognostic effects on survival. This study aims to gather and use patient-specific information to create a decision aid for nutritional management to

1) help apply patients’ values and preferences to the decision-making process, and

2) provide structure to and encourage patient-centered physician-patient discussions surrounding feeding tube placement.

We hypothesize that by incorporating patient values and preferences and allowing patients to be actively engaged in the decision-making process, participants will report increased engagement and self-confidence, and decreased uncertainty with their decision throughout the decision-making process. 

Study Details/Funding

XDP is an endemic neurodegenerative disease that primarily affects Filipino men originally from Panay Island, Philippines at a rate of approximately 5.24 per 100,000 inhabitants. It is a rapidly progressing, disabling disease partially characterized by devastating speech and swallowing deficits. These deficits have a negative impact on quality of life and prognosis, placing a tremendous burden on patients, families, healthcare systems, and society in general. Despite the impact of speech and swallowing deficits, our current knowledge about oromotor impairments in XDP is limited. Moreover, there are no standardized or validated tools for assessing oromotor, speech, and swallowing impairments in patients with XDP. T

he goals of this proposal are (1) to identify valid diagnostic markers of oromotor dysfunction that are sensitive, specific, and responsive to declines in speech and swallowing function in persons with XDP; (2) to determine if the rates of decline in oromotor, speech, and swallowing function are predicted by age of disease onset, age at testing, time since diagnosis, and/or clinical phenotype; (3) to estimate the prevalence of malnutrition and determine the risk factors for malnutrition in persons diagnosed with XDP.