Disease progression impacts health-related quality of life in amyotrophic lateral sclerosis

To determine the impact of disease progression on health-related quality of life in amyotrophic lateral sclerosis (ALS).A total of 161 patients with ALS were enrolled. Assessments included the revised ALS Functional Rating Scale and the ALS Assessment Questionnaire (ALSAQ-40). Data analysis comprised linear regression and multivariate analyses.ALSFRS-R score (β = 0.75, p < 0.001), depression (β = 0.08, p < 0.001), pain (β = 0.07, p < 0.001), hopelessness (β = 0.07, p = 0.001), and progression rate (β = 0.02, p = 0.02) explained 76% of the ALSAQ-40 summary index variance. Progression rate alone explained 7% of the ALSAQ-40 summary index variance. The subdomains of emotional well-being, followed by ADL, and finally communication and eating were most strongly influenced by progression rate.Our study demonstrates the importance of physical health for emotional well-being. In particular, slower disease progression is associated with higher levels of emotional well-being in ALS.