Impacting Care and Quality of Life
for Patients with LGS and Their Caregivers
This dedicated page is designed to support health care practitioners, patients, and families through one of the most challenging phases of Lennox-Gastaut syndrome care. Here you will find concise, expert-led educational videos for clinicians focused on best practices in transition planning, coordination across care teams, and optimizing long-term management in adult settings. Complementary videos and plain-language resources for patients and caregivers offer practical guidance on navigating new clinicians/practices, advocating for needs, managing daily life, and maintaining quality of life during and after the shift from pediatric to adult care.
David E. Burdette, MD
Section Chief, Adult Epilepsy, Corewell West Health System
Assistant Professor, Michigan State University School of Human Medicine
Grand Rapids, MI
Steve S. Chung, MD
Professor, Department of Neurology
University of Arizona College of Medicine Phoenix
Director, Epilepsy Program
Banner University Medical Center
Phoenix, AZ
Laurie M. Douglass, MD
Chief, Child Neurology
Co-Director, Pediatric Epilepsy
Associate Professor, Pediatrics and Neurology
Boston Medical Center and
Boston University Chobanian and Avedisian School of Medicine
Boston, MA
Jennifer Griffin
Director of Family Support
Lennox-Gastaut
Syndrome (LGS) Foundation San Diego, CA
Ika Noviawaty, MD
Clinical Associate Professor
Epilepsy Division Chief
Department of Neurology
Boston University Chobanian & Avedisian School of Medicine
Boston, MA
Bethany Thomas, DNP
Epilepsy Nurse Practitioner
Hospital of the University of Pennsylvania
Philadelphia, PA
Lennox-Gastaut syndrome (LGS) is a severe epileptic encephalopathy with early childhood manifestations that results in developmental delays, behavioral issues, and cognitive dysfunction. Alongside treatment-resistant seizures, patients with LGS experience a wide range of non-seizure symptoms that severely impact quality of life for both the patient and their caregiver. In addition to caring for seizures and non-seizure symptoms, clinicians must collaborate with a multidisciplinary care team to develop long-term care plans for patients with LGS, particularly as patients transition from pediatric to adult care.
In this CME Outfitters webcast, expert faculty will elucidate the recognition of non-seizure symptoms associated with LGS and their impact on patient and caregiver quality of life as well as guide learners through developing long-term care plans for patients with LGS in collaboration with their caregivers and the interdisciplinary care team.
Care of patients with Lennox-Gastaut syndrome (LGS) changes substantially when patients reach adulthood and transfer to adult care. Seizure types and frequencies often change with age, behavioral issues may become more difficult to manage, and the introduction of long-term care centers, day programs, and group homes can complicate communication and care coordination. As patient needs evolve, actively incorporating caregiver and patient experiences into clinical conversations surrounding LGS will champion holistic, personalized care that prioritizes quality of life.
In this CME Outfitters webcast, expert faculty will discuss strategies to care for patients with LGS as they reach adulthood, including how to manage and prevent behavioral issues in adult patients with LGS, the development of in-depth seizure action plans, improving communication with group homes and long-term care centers, and strategies for effective collaboration with patients, caregivers, and the interdisciplinary care team for LGS.
The transition from pediatric to adult care for patients with Lennox-Gastaut syndrome (LGS) is often hindered by fragmented planning and a lack of personalized support. As young adult patients move from home-based care to group homes, assisted living, or long-term care facilities, an absence of coordinated transition models to guide them and their caregivers can lead to confusion, delays, and diminished quality of life. To ensure a successful future for patients with LGS as they transition into adulthood, caregivers must be aware of the differences between adult and pediatric care and how best to collaborate with the adult care team.
In this CME Outfitters webcast, an expert health care professional and an experienced LGS caregiver will discuss the intricacies of adult care for LGS, including the key differences between pediatric and adult care in LGS as well as best practices for collaboration with the adult care team in the management of LGS.
