Understanding the Burden of Lennox-Gastaut Syndrome: Implications for Patients, Caregivers, and Society in High and Low Resource Settings: A Narrative Review.

Background: Lennox-Gastaut syndrome (LGS) poses significant challenges in diagnosis, management, and treatment due to its rare nature, diverse presentation, and drug-resistant seizures. While classical features aid diagnosis, challenges persist, impacting patient care and outcomes. Understanding the syndrome's burden is essential for improving healthcare policies and interventions.

Aim: This literature review aimed to comprehensively analyze clinical symptom burden, comorbidities, care requirements, quality of life (QoL), economic burden, caregiver burden, and treatment burden to pinpoint knowledge gaps for future research and intervention development, ultimately aiming to enhance the well-being of patients and caregivers.

Methods: A comprehensive literature review was conducted using electronic databases and manual searches to analyze clinical symptom burden, comorbidities, care requirements, QoL, economic burden, caregiver burden, and treatment burden associated with LGS.

Results: LGS significantly impacts the QoL for patients, with seizures, cognitive impairment, and social challenges affecting various aspects of daily living. Caregivers, particularly mothers, face significant stress and exhaustion, impacting their own health and well-being. Healthcare resource utilization is substantial, with elevated costs for LGS patients compared to controls. Cognitive impairment is prevalent and worsens over time, influencing educational and social outcomes. Prognosis varies based on factors like age of onset, underlying cause, and genetic factors, with limited treatment options available.

Conclusion: Managing LGS requires tailored approaches addressing seizures, comorbidities, and caregiver needs. While advancements in treatments and surgical techniques offer hope, challenges persist in achieving optimal outcomes and reducing the societal burden. The management of LGS involves a combination of pharmacological and nonpharmacological therapies, tailored to the individual patient's needs and response to treatment. Regular follow-up with a neurologist specialized in epilepsy is crucial for ongoing management, including annual reassessment of the diagnosis and treatment plan. The primary focus should always be on optimizing the patient's QoL, including learning and behavioral management, as complete seizure remission is rare.