Outcomes and Survival in Pediatric Drug-Resistant Epilepsy

​Evidence to Support Informed, Shared Decision-Making

Overview:
Children with drug-resistant epilepsy face substantial risks to health, development, and long-term survival. When seizures persist despite appropriate antiseizure medications, timely evaluation at a comprehensive epilepsy center is critical. Decisions about treatment—including continued medical therapy, neuromodulation, or epilepsy surgery—should be guided by high-quality evidence, individualized clinical assessment, and shared decision-making between families and multidisciplinary care teams.

This page summarizes population-level evidence on long-term survival outcomes associated with different treatment approaches for pediatric drug-resistant epilepsy, with links to peer-reviewed publications for clinicians, families, and researchers seeking primary sources.

What Is Drug-Resistant Epilepsy?
Drug-resistant epilepsy is defined as the failure of two appropriately chosen and adequately used antiseizure medications to achieve sustained seizure freedom. Approximately 20% of children with epilepsy meet criteria for drug resistance. Ongoing seizures are associated with increased risks of injury, developmental impairment, sudden unexpected death in epilepsy (SUDEP), and premature mortality.

Evidence on Survival and Treatment Options

My research team published a large observational cohort study using data from more than 18,000 children treated at pediatric hospitals across the United States examined long-term survival associated with three treatment strategies:
  • Antiseizure medications alone
  • Antiseizure medications plus vagus nerve stimulation (VNS)
  • Antiseizure medications plus cranial epilepsy surgery
After adjustment for demographic and clinical differences, long-term survival was highest among children who underwent cranial epilepsy surgery, followed by those treated with VNS, and lowest among those treated with medication alone. These findings underscore the importance of comprehensive evaluation and timely consideration of all appropriate treatment options at specialized epilepsy centers.

Peer-reviewed source:
Zhang L, Hall M, Lam SK. Comparison of long-term survival with continued medical therapy, vagus nerve stimulation, and cranial epilepsy surgery in paediatric patients with drug-resistant epilepsy in the USA. The Lancet Child & Adolescent Health, 2023.

Plain-Language Summary for Families and Caregivers
To support patient-centered decision-making, the findings from this study were also translated into a peer-reviewed plain-language summary, co-authored with patient advocates. This summary explains the results using non-technical language, highlights study limitations, and emphasizes that treatment decisions should be individualized and based on the totality of available evidence that makes the most sense for the patient. See the plain language summary available for pdf download here. 



Peer-reviewed plain-language summary:
Zhang L, Hall M, Jones M, Stanton T, Lam SK. Long-term survival in children with drug-resistant epilepsy: plain language summary of a comparison between medicine, vagus nerve stimulation, and cranial epilepsy surgery in the USA. Future Neurology, 2025.

Why Timing and Access to Care Matter:
Delays in referral for comprehensive epilepsy evaluation are common, even after epilepsy becomes drug resistant. Evidence indicates that prolonged exposure to uncontrolled seizures in childhood may adversely affect survival and neurodevelopment. National data also demonstrate disparities in access to advanced epilepsy treatments based on race, ethnicity, and insurance status, highlighting the need for equitable referral pathways and multidisciplinary care.

How This Evidence Should Be UsedThis research does not suggest that any single treatment is appropriate for all children. Instead, it supports:
  • Early referral for comprehensive epilepsy evaluation
  • Multidisciplinary assessment of surgical and non-surgical options
  • Shared decision-making between families and experienced care teams
  • Transparent discussion of benefits, risks, and uncertainties
High-quality evidence is most valuable when applied thoughtfully to individual patients. 
For families: Stop searching. Start learning. Ask questions to your healthcare team so you understand your options. 


About the Research ProgramThis work is part of an ongoing program of comparative effectiveness and outcomes research in pediatric epilepsy surgery, focused on survival, access to care, and evidence-based decision-making for children with complex epilepsy. The research emphasizes ethical dissemination, collaboration with patient advocates, and translation of population-level data into clinically meaningful guidance.

Additional Resources