The prevalence and impacts of psychological disorders in caregivers of Chinese ALS patients

Abstract

Objective: To investigate the prevalence and influential factors of depression, anxiety, suicidal tendency and sleep disorders in caregivers of Chinese amyotrophic lateral sclerosis (ALS) patients.

Methods: A total of 153 ALS caregivers were investigated using the Patient Health Questionnaire-9 (PHQ-9), Self-Rating Anxiety Scale (SAS), Self-Rating Depression Scale (SDS), the Nurses’ Global Assessment of Suicide Risk scale (NGASR) and Pittsburgh sleep quality index (PSQI). The risk factors related to psychological disorders in Chinese ALS caregivers were analyzed.

Results: The medians (range) of PHQ-9, SAS, SDS, PSQI were 12 (0-27), 43 (25-80). 55.20% (25.10%-82.11%), 9 (1-21), respectively. A total of 40 (26.14%), 37 (24.18%) and 22 (14.38%) showed moderate, high and extremely high risk of suicide evaluated by NGASR. There was a negative correlation between disease duration of ALS patients and PHQ-9, SAS, SDS, NGASR, PSQI of their caregivers (p<0.05). Onset age of ALS was negatively related to PHQ-9 (p<0.001) and SDS (p=0.003) in ALS caregivers. Bulbar involvement was significantly related to high level of SDS in caregivers (p=0.028). Pet raising and regular reading was significantly associated with low PHQ-9, SDS, NGASR and PSQI (p<0.05). Participation in ALS- related social activities was negatively related to NGASR of ALS caregivers (p<0.001).

Conclusion: Depression, anxiety, poor sleep quality and risk of suicide were commonly reported by ALS caregivers. Early onset, bulbar involvement and rapid progression might exacerbate the psychological distress of ALS caregivers. Regular reading, pet raising and participation in social activities could decrease risk of suicide and improve sleep quality of ALS caregivers.