To define typical and disruptive sleep patterns in patients with developmental and epileptic encephalopathies (DEEs) and explore their association with activities of daily living (ADLs) and communication.

DEEs are characterized by high seizure burden and developmental disability. Sleep disruptions are common in people with DEE. Caregiver definitions of typical (“normal”) and disruptive sleep, and caregiver observations of their effects on ADLs (feeding, bathing/hygiene, dressing, and toileting) and communication, have not been extensively explored.

An anonymous, internet-based, 63-question survey, developed in consultation with the Dravet Syndrome Foundation and Lennox-Gastaut Syndrome Foundation, was distributed to caregivers of patients with DEEs via DEE-specific communities (March 11–April 30, 2024). Data specific to disruptive sleep patterns and their impact on ADLs and communication were assessed.

Of 489 caregivers (median patient age [range], years: 8 [0–67]), sleep was “unpredictable with no typical pattern” in 47 (9.6%) patients. Daily disruptive sleep was experienced by 132 (27.0%) patients. Medical device and medication side effects were reported as factors in excessive sleep in 11 (2.2%) and 164 (33.5%) patients, respectively.

Most caregivers reported a “good night of sleep” for the patient as a sleep duration of 5–7 (n=126, 25.8%) or 7+ hours (n=314, 64.2%). Approximately half of caregivers reported co-sleeping with the patient (n=223, 45.6%) and use of a nighttime seizure-monitoring device (n=250, 51.1%); 97 (19.8%) reported both co-sleeping and use of a seizure-monitoring device. Alarms without observed seizure activity occurred for 112/250 (44.8%) using a device.

Sleep disruptions were associated with the temporary loss of ≥1 ADL in 120 (24.5%) patients and temporary loss of communication in 105 (21.5%) patients.

Sleep disturbances in approximately a quarter of patients with DEE were associated with temporary loss of an ADL or communication. Further analyses on relationships among DEEs, disruptive sleep, and quality of life are warranted.