Volume 56, December 2025, 101244Author links open overlay panelMary Wojnaroski a, Megan Votoupal b, Sandi Lam b c, Anup D. Patel a dShow moreAbstract

Lennox-Gastaut syndrome (LGS) is a severe developmental and epileptic encephalopathy with frequent intractable seizures and non-seizure symptoms, such as cognitive impairment and challenging behaviors. Individuals with LGS and their caregivers often report poor quality of life (QoL). Despite this knowledge, QoL is not routinely evaluated or addressed in individuals with LGS and their families. Reduction in seizure frequency through appropriate antiseizure medications (ASM) and epilepsy surgery are critical for improved QoL; however, given the rarity of seizure freedom in this population, assessment and treatment of non-seizure symptoms is also critical. Validating existing QoL measures for individuals with LGS and their families will support a more comprehensive understanding of the factors that shape their lived experience. Multidisciplinary interventions to address development, behavior, and family functioning, as well as referrals to family support groups and improved care coordination are recommended.

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Access through your organizationSection snippetsWhat we know

Lennox-Gastaut syndrome (LGS) is a severe childhood onset developmental and epileptic encephalopathy, characterized by multiple drug-resistant seizure types (tonic required), diffuse slow spike and wave and generalized paroxysmal activity on electroencephalography (EEG), and intellectual disability, with cognitive stagnation over time.1 LGS is associated with a wide range of etiologies, including genetic, structural, infectious, immune, and metabolic. Seizures are often poorly controlled and

What we can do

Given the poor QoL experienced by individuals with LGS, efforts to improve outcomes are warranted. Several recommendations are offered for health care providers to support patients and their families, including timely referral for surgical evaluation, increased understanding of QoL contributors to guide high-impact interventions, connection with behavioral and mental health services, neurologist management of co-occurring conditions when possible, incorporation of holistic care strategies,

Future directions

Although there is growing recognition of the importance of QoL, much remains to be understood and addressed. Further studies are needed to validate existing QoL measures to determine their relevance for individuals with LGS and their families. Qualitative studies may be needed to interview key stakeholders about contributors to QoL in individuals with intractable epilepsy and intellectual disability. This will hopefully lead to increased understanding of the factors that affect QoL, especially

CRediT authorship contribution statement

Mary Wojnaroski: Writing – review & editing, Writing – original draft, Formal analysis, Data curation, Conceptualization. Megan Votoupal: Writing – review & editing, Writing – original draft, Formal analysis, Data curation, Conceptualization. Sandi Lam: Writing – review & editing, Writing – original draft, Formal analysis. Anup D. Patel: Writing – review & editing, Writing – original draft, Formal analysis, Data curation, Conceptualization.

Declaration of competing interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

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