The Impact of Non-Seizure Symptoms in Dravet Syndrome and Lennox–Gastaut Syndrome

Abstract

Dravet syndrome (DS) and Lennox–Gastaut syndrome (LGS) are developmental and epileptic encephalopathies (DEE) that onset in childhood, and persist lifelong. In both, non-seizure symptoms (NSS) include intellectual disability, psychiatric symptoms, speech and communication difficulties, motor and gait difficulties, appetite and eating difficulties, autism spectrum characteristics, attention deficit hyperactivity disorder, and sleep disorders. The NSS impact health-related quality of life (HRQoL) for the affected individual and the caregiver, considering personal time, sleep, finances, energy, and family and social relationship. In this industry-sponsored symposium, three leading ex-perts in DEEs discussed NSS, and how properly assessing and tracking these can lead to more informed understanding of an individual’s needs. This can help to guide treat-ment for NSS and, subsequently, increase HRQoL for both the individual and their caregivers.