At-home EEG-based sleep monitoring in people living with Lennox-Gastaut syndrome: The HEADFIRST study

Objectives Sleep dysfunction is a common but poorly characterized symptom in people living with Lennox-Gastaut syndrome (LGS). Sleep impairments exacerbate seizures while ictal activity causes sleep disturbance, leading to a cycle of sleep-epilepsy worsening. The HEADFIRST study was conducted to assess whether caregivers could self-operate a dry-electrode EEG headband (Waveband) to collect in-home EEG data from participants with LGS and neurotypical controls (siblings). Methods In this observational cohort study caregivers were instructed on how to place/operate the dry-EEG electrode device on participants with LGS and their neurotypical siblings (aged 5–18 years). Overnight recordings were collected for 2 non-consecutive 5-night blocks (including ≥ 2 consecutive nights). Data collected included EEG recordings, automated sleep staging, and caregiver-reported diaries/outcomes. Statistical differences in sleep parameters were calculated for the LGS versus control cohorts. Results Recordings from 10/12 participants with LGS and 10/10 controls were included. Caregivers successfully recorded 83 % (10/12) of the LGS cohort and 90 % (9/10) of neurotypical controls for the instructed 5 nights, including ≥ 2 consecutive nights. Distinct EEG-based sleep and epileptiform differences were observed across groups. During non-REM sleep, the LGS cohort demonstrated characteristic EEG abnormalities, including slow spike-wave discharges, sporadic interictal epileptiform discharges, generalized paroxysmal fast activity, or electrographic seizures. Total sleep time (LGS: 465.8 min; control: 440.6 min) and sleep onset latency (LGS: 17.3 min; control: 28.5 min) were similar between groups; significant increases in wake after sleep onset (LGS: 43.0 min; control: 18.0 min), decreases in REM sleep duration (LGS: 51.3 min; control: 100.6 min), and number of sleep cycles (LGS: 2.6; control: 4.6) were observed in the LGS vs control groups (all p < 0.05). Significance Multi-night, at-home, caregiver-conducted EEG recordings were feasible and provided usable data. The HEADFIRST study demonstrated statistically and clinically significant sleep disruptions in LGS versus control cohorts. Significant differences in sleep architecture were observed, including loss of sleep cycling and reduced REM sleep. Ambulatory EEG-based systems may aid in further understanding sleep pathology in people living with epilepsy.