Verbal communication impacts quality of life in patients with amyotrophic lateral sclerosis

Abstract

Global quality of life (QoL) in patients with ALS has been found to be independent of overall physical function. However, the relationship between verbal communication ability and QoL has not been explored. This was a retrospective study using data from a study validating the ALS-Specific QoL Questionnaire (ALSSQoL). Speech function was assessed using the first question on the ALS Functional Rating Scale (ALSFRS), ranging from 4 (normal speech) to 0 (loss of useful speech). There were 338 participants for whom data were available for speech function and for all ALSSQoL subscales. Analysis of variance revealed that QoL varied among individuals with different functional abilities for speech (F (4,333) = 5.13, p = 0.001). Specifically, poorer QoL was related to initial impairments in verbal communication ability (p = 0.005). QoL also was poorer in those with no speech ability compared to those with normal speech (p = 0.008). In conclusion, the ability to communicate verbally, unlike overall physical function, is directly related to overall QoL in patients with ALS. The initial period of speech impairment appears to have a particularly strong impact on QoL, and may be an important time for intervention.

Key words:

• Amyotrophic lateral sclerosis
• communication
• verbal communication
• quality of life

Acknowledgements

This study is derived from work performed by Jason Duff as his dissertation study, in partial fulfillment of the requirements to earn his PsyD in Clinical Psychology at Philadelphia College of Osteopathic Medicine. This work was supported by the Paul and Harriet Campbell Fund for ALS Research, the ALS Association Greater Philadelphia Chapter, and many other private donations.

Declaration of interest

Z. Simmons has received reimbursement from Neuralstem, Inc., for serving on a Data Safety Monitoring Board for an ALS therapeutic trial. Other authors have no conflicts of interest to disclose.