Communicative Participation in People with Amyotrophic Lateral Sclerosis

Communication is affected in most people with amyotrophic lateral sclerosis (ALS); up to 80-95% will reach a point where they are no longer able to meet their communicative needs with natural speech. The deterioration of speech and communicative abilities presumably has an impact on communicative participation. However, little is known about how these factors relate to each other in this population of patients.

This study aimed to investigate the association between communicative participation, functional deficits, and severity of dysarthria in individuals with ALS.

Thirty people with ALS were rated for (1) communicative participation, using the Communicative Participation Item Bank (CPIB, Swedish); and (2) disability related to the disease, using the Revised ALS Functional Rating Scale (Swedish). An expert listening panel assessed intelligibility and severity of dysarthria based on recorded text readings and sentences from the Swedish Test of Intelligibility.

CPIB scores were significantly lower for participants with moderate/severe dysarthria than for those with no/mild dysarthria and correlated with bulbar function and intelligibility.

The study found that the CPIB provides a means to rate and discuss communicative participation with persons with ALS, which could assist in the planning of further efforts/services.