The Hidden Cost of Developmental and Epileptic Encephalopathy in Australia: Caregiver Quality of Life, Sleep, Depression, and Workforce Participation

Abstract

Aim To quantify caregiver burden, sleep quality, health-related quality of life, and work productivity among caregivers of individuals with developmental and epileptic encephalopathies (DEEs) in Australia. Method A cross-sectional online survey was conducted between June 2024 and March 2025 among primary caregivers of individuals with DEEs living in Australia. Caregivers were recruited through national epilepsy organisations, hospitals, and private practices, and completed the Oberst Caregiving Burden Scale, Work Productivity and Activity Impairment questionnaire, Beck Depression Inventory-II, Pittsburgh Sleep Quality Index, and EQ-5D-5L. Descriptive analyses were performed and associations ..