Apathy Associated with Lower Quality of Life in ALS Patients, Study Shows

José Lopes, PhD avatar

by José Lopes, PhD |

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Apathy, quality of life

Amyotrophic lateral sclerosis (ALS) patients experiencing feelings of apathy reported lower quality of life (QoL), particularly regarding achievements in life and community connectedness, a new Australian study reports.

The research, “Apathy and its impact on patient outcome in amyotrophic lateral sclerosis,” appeared in the Journal of Neurology.

Apathy is one of the most prevalent neuropsychiatric symptoms of neurodegenerative disease and is associated with a greater risk of developing dementia. Apathy is now considered a core symptom of ALS with behavioral impairment, which has led to efforts to study it and work toward appropriate intervention strategies.

Despite its negative effect on ALS patient prognosis and on the well-being of caregivers, little research has examined the impact of apathy on patients’ quality of life (QoL). Existing evidence shows mixed results and does not take into account the multidimensional nature of apathy, with cognitive, behavioral, and emotional characteristics.

Researchers at the University of Sidney evaluated whether apathy correlated with patient-rated QoL in ALS patients receiving multidisciplinary care.

“This has important implications given that symptom management and preservation of QOL remains the mainstay of treatment especially if provided within a multidisciplinary care setting,” the researchers wrote.

The study analyzed 60 ALS patients with a mean age of 63, recruited from 2014 to 2017. The mean disease duration from symptom onset was 38.4 months.

The patients were evaluated using the Apathy Evaluation Scale, which assesses behavioral, cognitive, emotional, and non-specific symptoms, and the Personal Wellbeing Index, a measurement of QoL including eight domains: personal health, personal relationships, standard of living, personal safety, achievements in life, community connectedness, future security, and spirituality/religion.

Specific scales for physical status, as well as anxiety and depression, also were used. The scientists also addressed patients’ cognitive and behavioral status.

The results revealed that 30 percent of ALS patients were apathetic. In addition, apathy correlated with higher levels of depression. Given the similar symptoms of apathy and depression, distinguishing these two ALS manifestations remains crucial, the scientists said.

Patients with apathy also had lower overall QoL, with the most affected areas being achievements in life and community connectedness.

From the other analyzed symptoms, only the emotional manifestations differed significantly in regards to QoL issues. Clinical manifestations may include emotional indifference, reduced sensitivity to rewards, and lack of interest. Therefore, emotional symptoms of apathy may be the basis of worse QoL in ALS patients with behavioral impairment, the study’s authors stated.

Overall, the results highlight the relevance of measuring QoL categories in ALS patients beyond the impact on physical health.

“Patient-reported outcomes, particularly those assessing psychosocial functioning may be important for demonstrating the efficacy of interventions designed to improve QOL in ALS patients with behavioral impairment,” the scientists wrote.

Future studies would benefit from including patients with more varied cognitive impairments measured with ALS-specific instruments, the team observed.