Self-reported initiation apathy is related to worse quality of life in amyotrophic lateral sclerosis

Objective: Apathy is the most prevalent behavioral impairment or difficulty for people with ALS (pwALS), with Initiation apathy (a lack of motivation for self-generation of thoughts and/or actions) the most common subtype. Self-rated or self-perceived quality of life (sQoL) is impacted for pwALS, but the relationship to apathy subtypes is unknown. The aim was to explore the relationship between sQoL domains and apathy in pwALS. Methods: 32 pwALS were recruited and completed self-rated measures of apathy (Dimensional Apathy Scale), depression, anxiety, and emotional lability. The ALS-specific QoL short-form instrument was used to measure QoL. Cognitive functioning and functional disability were measured. Exploratory, comparative, and predictive multiple hierarchical regression analyses were performed. Results: Initiation apathy was the most common apathy subtype at 37.5% (N = 12). PwALS with Initiation apathy had higher depressive symptoms (p <.05, d = 1.11 large effect) and lower cognitive functioning (p <.05, d = 0.76 medium effect) than those without apathy. PwALS with Initiation apathy had significantly worse sQoL in domains of interaction with people and the environment (p <.05, d = 0.92, large effect) and negative emotions (p <.05, d = 0.80, large effect) than those without apathy. Regression analysis showed Initiation apathy was a significant negative predictor of the sQoL domain of interaction with people and the environment (beta =-.20, p <.01), controlling for confounders (functional disability, depression, cognitive functioning). Conclusions: Initiation apathy was associated with QoL domains of interaction with people and the environment, from the perspective of the pwALS. This emphasizes the importance of self-rating or self-perception for clinical and researcher assessment of apathy and QoL for pwALS.