Beyond seizures: Comprehensive care approach for Lennox-Gastaut syndrome

Non-seizure issues (NSIs), including cognition, behavior/psychiatric symptoms, adaptive and social functioning, sleep, autonomic, and motor impairments, often shape day-to-day outcomes in Lennox-Gastaut syndrome (LGS) more than seizures, yet clinicians lack LGS-specific, feasible assessment pathways. An expert panel synthesized evidence and clinical experience to propose a lifespan, clinic-ready framework that pairs clinician-administered measures with caregiver/teacher reports and uses brief global impressions from both clinicians and caregivers to detect meaningful change. The framework emphasizes continuous, structured conversations about NSIs at every visit, with standardized tools deployed less frequently in line with the properties of instrument re-administration and local resources. As a pragmatic guide, behavior/sleep are typically reviewed every 6-12 months, and cognition/adaptive skills are reviewed annually. Rather than prescribing a universal "minimum battery" the approach prioritizes personalization to developmental stage, comorbidities, disability level, and family context. The Discussion also integrates therapeutic considerations: Early data suggest fenfluramine and cannabidiol may benefit alertness, behavior, sleep, and communication beyond seizure reduction, while acknowledging that LGS-specific evidence remains preliminary. Key gaps include the limited validation of instruments in LGS, the scarcity of adult-focused measures (e.g., biopsychosocial frailty), and tools that are insufficiently sensitive to small but meaningful changes. We outline a research agenda for co-designed clinical outcome assessments that combine quantitative scales with qualitative insights from patients, caregivers, and teachers. Centering NSIs and feasible follow-up, this work offers a practical route to move LGS care beyond seizure counts toward participation, resilience, and quality of life for patients and families. PLAIN LANGUAGE SUMMARY: People with Lennox-Gastaut syndrome often struggle with problems beyond seizures, such as learning, behavior, sleep, movement, and daily living skills. These non-seizure issues can affect quality of life even more than seizure counts. We propose a practical, clinic-ready approach to check these issues across all ages using brief clinician assessments plus caregiver and teacher input. Regular conversations at each visit, with targeted questionnaires every 6-12 months or yearly, can help detect meaningful changes and guide care.