Evolution of quality of life, mental health, and coping strategies in amyotrophic lateral sclerosis: A pilot study

摘要

Background and Objectives: Amyotrophic lateral sclerosis (ALS) is a fatal, neurological disease, which can potentially impact mental health as well as the adaptation process of people who are affected. Most of the results available are cross-sectional. The aim of this study was to study the evolution of coping strategies, Quality of Life (QoL), and mental health in a sample of ALS patients. Methods: Forty-nine patients with ALS were interviewed in order to obtain their demographic and medical data. Then, each one was asked to complete a questionnaire of coping strategies (Brief COPE), mental health (GHQ-28), and QoL (SF-36) at two different moments of the disease evolution. As many patients died in the interim, only 30 completed questionnaires at T2. The Wilcoxon test was used in order to compare mean scores between T1 and T2. Results: On the GHQ-28, the differences concerned two dimensions: somatic disorders (Z=-2.15, p=0.03) and anxiety sleep disorders (Z=-2.07, p=0.04). We noted that mean scores increased between T1 and T2. Regarding coping strategies, only one tendency was found on the COPE. It concerned behavioral disengagement (Z=1.84, p=0.06), which was used more at T2 than at T1. Concerning QoL, one significant difference and one tendency between T1 and T2 were found. They involved pain (Z=2.52, p=0.01) and a tendency toward emotional role functioning (Z=-1.86, p=0.06). Discussion: This study, the first to evaluate psychosocial aspects of ALS over time, underlines the importance of global, multidisciplinary, and adapted care.