This preprint [1] covers several important advances in the development of new digital-enabled measures of ALS progression:
ALS symptoms can result in speech that can be difficult to understand (dysarthria)
“Listener effort” is a well-established measure related to dysarthria in speech-language pathology
Speech-language pathologists can assess listener effort reliably and rapidly
Listener effort correlates with well-established measures of ALS progression in individuals who have bulbar symptoms (e.g., symptoms that affect speech and swallowing)
Speech-language pathologist assessment of listener effort may help measure disease progression in these individuals with more granularity than can be provided by traditional measures alone
Machine learning models trained to measure listener effort also show promising performance
A key quote:
Not only is [listener effort] a reliable, quantitative endpoint of bulbar function, it is also an inherently clinically meaningful endpoint. The effect of dysarthria on communication and, in turn, quality of life, is well accepted in clinical settings. The EFNS-ALS guidelines suggest assessment of communication and treatment with communication support systems. People living with ALS worry about losing the ability to communicate. Decreased speech function on the ALSFRS-R question 1 (speech), is associated with poorer quality of life (QoL) on the ALS-Specific QoL Questionnaire (ALSSQoL). Furthermore, augmentative communication devices stabilize or improve both the quality of life and mood in people with dysarthria due to ALS Similar impacts of progressive dysarthria on quality of life have been demonstrated in Parkinson’s disease and other neurological disorders.1
The preprint is worth reading, and the data is available to other researchers through Everything ALS.
A version of this post originally appeared on LinkedIn.
References
Footnotes
See the preprint for additional context and references.↩︎