Abstracts

Rationale: Children with epileptic encephalopathies (EE) often experience sleep disturbance, which can contribute to sleep deprivation and fatigue in individuals caring for children with EE. However, relatively little is known about additional drivers of sleep disturbances in caregivers. Here we sought to address this knowledge gap by quantifying sleep disturbance in caregivers, examining the associations between partner status, number of children in the family, and country of residence with sleep disturbance, and examining the associations between sleep disturbance and caregiver depression, anxiety, fatigue, stress, and social role participation. We hypothesized that: (1) the study sample would report higher levels of sleep disturbance than the general population; (2) demographic factors related to how much support is available to the caregivers (e.g., marital status, country of residence) and how much family responsibility that the caregivers have (e.g., number of children) would be associated with caregiver sleep disturbance; and (3) sleep disturbance would be associated negatively with a measure of social role participation, and positively with measures of psychological dysfunction and fatigue.

Methods: Caregivers of children with EE in European Union (EU) countries (Germany, Italy, Spain and France) and the United States (US) completed online surveys that included demographic and health related quality of life measures. Sleep disturbance, depression, anxiety, fatigue, and ability to participate in social roles were assessed using the PROMIS®-29 profile. Stress was evaluated using the University of Washington Caregiver Stress Scale (UW-CSS). Student’s t-tests were completed to compare sleep scores to the US general population and across demographic and caregiver factors. Linear regression analyses were used to examine the association between sleep and measures of psychological and social function.

Results: Caregivers (N=375) of children with EE report significantly (p< 0.0001) worse sleep disturbance (M=54.6) than the US general population (M=50.0); 24% report moderate sleep disturbance (i.e., score ≥ 55 and < 60) and 16% report severe sleep disturbance (i.e., score ≥60). Caregivers who do not live with a partner (vs live with a partner), live in the US (vs EU), and have two or more children (vs. one child) report worse sleep disturbance (all p’s< 0.001) (see Table 1). Regression analyses indicate sleep disturbance is associated with less satisfaction with social participation and worse anxiety, depression, fatigue, and caregiver stress (all p’s< 0.001) (see Table 2).