Researchers at the MGH Institute have determined when amyotrophic lateral sclerosis patients will lose their functional speech; the estimated timelines can facilitate timely intervention and are useful in monitoring a patient’s functionality during clinic

It’s an unfortunate reality that some patients with amyotrophic lateral sclerosis (ALS) will lose their ability to speak – the only question is “when.” Now, thanks to research led by Drs. Marziye Eshghi and Jordan Green at the MGH Institute’s Speech and Feeding Disorders Lab, there are now estimates of how fast that occurs considering a patient’s clinical and demographic characteristics. 

Dr. Eshghi is the lead author in the paper “Rate of Speech Decline in Individuals with Amyotrophic Lateral Sclerosis,” published in the journal, Scientific Reports; the research provides the first look at the speed ALS progresses.   

“Given the importance of speech in everybody's life, one of the first questions that people with ALS have and neurologists and speech pathologists have is: ‘How far away are we until the loss of speech?’” says Eshghi, an Assistant Professor at the Communication Sciences and Disorders Department at the IHP. “We’ve never been able to provide an estimate, but now we have some understanding of that. It’s really about providing appropriate counselling and helping some ALS patients who may need to seek solutions for communication such as the application of augmentative and alternative communication devices.” 

The research looked at 166 ALS patients from the United States and Canada and utilized two data points from the same people, making this, according to Eshghi, “the largest longitudinal scale study on this topic ever done.”  

Study participants read a list of computer-generated random sentences called a Sentence Intelligibility Test; and subsequently measures of speaking rate (number of words per minute) and intelligibility (the percentage of words that were understandable) were computed from their speech samples. 

Researchers have long known that patients with Bulbar-onset ALS will lose their functional speech earlier than those with Spinal-onset ALS, but they had yet to quantify the rate of speech decline. In the paper, the researchers determined that while between 60%-70% of individuals with Bulbar-onset ALS will lose their functional speech in about three years after symptom onset, the majority of individuals with Spinal-onset ALS will retain their functional speech over five years since symptom onset. In addition, the findings of this study revealed that among various demographic and clinical factors (e.g., sex, age at disease onset, and site of onset), the site of onset – the part of the body first affected by ALS - is the main influential factor in the rate of speech decline. 

“Our findings provide valuable information about speech decline in ALS,” said Eshghi. “The research is not only helpful for patients and caregivers but also for neurologists and speech language pathologists who are involved in the clinical management of ALS, and who are evaluating the functional changes in patients’ speech performance.” 

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