The Effects of Speech Impairment on Quality of Life over Time in Patients with Amyotrophic Lateral Sclerosis

Limited research exists on how speech impairments affect quality of life (QOL) factors over time in patients with amyotrophic lateral sclerosis (ALS). A review of the literature, including the history, disease course, and prevalence of ALS, is presented. Physical and psychosocial functioning, especially the decline of bulbar functioning’s potential impact on QOL factors and communication style, are outlined. This study is a follow-up study on a study by Duff, who found a significant difference in QOL relative to level of bulbar functioning in a cross-sectional design. The current study used a longitudinal design to look at bulbar functioning, specifically levels of speech, and how that affects certain aspects of QOL over time. This study used archival data, collected from a multidisciplinary clinic at three time points, and evaluated the following measures: ALS Functional Rating Scale–Revised (ALSFRS–R) and the ALS–Specific Quality of Life Measurement–Revised (ALSSQOL–R). ALSSQOL–R domains of Negative Emotion, Interaction with People and the Environment, Intimacy, and Bulbar Function were analyzed by repeated measures tests, and correlated to speech impairment over time. Results indicated that as speech became significantly more impaired, no significant differences were observed on the Negative Emotion, Interaction with People and the Environment, and Intimacy subscales. However, as the ability to speak declines over time, participants’ Bulbar Functioning subscale scores decreased. These findings suggest that increased bulbar symptoms are perceived as more problematic over time point. However, results also indicated that at the third time point (most recent clinic visit) the relationship between actual speech impairment and perceived bulbar functioning weakens