People with epilepsy have increased mortality rates compared to the age-matched population. Epilepsy is one of the most common neurological conditions, affecting at least 3.4 million people in the United States. Among children with epilepsy, an estimated 20 percent have DRE.
“We provide critical evidence for healthcare decision making for pediatric patients with drug-resistant epilepsy,” said senior author Sandi Lam, MD, Division Head of Neurosurgery at Ann & Robert H. Lurie Children’s Hospital of Chicago and Professor of Neurological Surgery at Northwestern University Feinberg School of Medicine. “Our findings also highlight the importance of the multidisciplinary team approach to the treatment of epilepsy, such as that offered at a comprehensive epilepsy center, which includes tailored evaluation and deployment of medical and surgical treatment options for patients with this challenging disease.”
However, fewer than 1 percent of patients of all ages with DRE are referred to comprehensive epilepsy centers. An estimated 100,000-200,000 people for whom epilepsy surgery is indicated do not receive it, according to the Center for Disease Control and Prevention (CDC) and Institute of Medicine.
“In light of our study’s findings, the catastrophic underutilization of epilepsy surgery may directly lead to avoidable premature deaths in pediatric epilepsy patients each year,” said Dr. Lam. “Epilepsy surgery is established as a safe and effective treatment, even in infants younger than 3 months of age. We need to improve early referral for comprehensive epilepsy evaluation to limit the harmful effects of ongoing seizures in the developing brain and to decrease the time to surgery. We show that children’s lives may depend on it.”
Dr. Lam and colleagues also found disparities in access to epilepsy surgery. White, privately insured children were more likely to receive surgical treatment.
“Our finding of disparities in access to epilepsy surgery needs to be explored further to identify multifactorial reasons and aim to improve healthcare delivery and health equity in the treatment of pediatric epilepsy,” said Dr. Lam.
The study included a total of 18,292 pediatric patients (0-17 years of age) with DRE. Data were obtained from the Children’s Hospital Association’s Pediatric Health Information System (PHIS), an administrative database that contains inpatient, emergency department, ambulatory, and observation encounter level data from 44 children’s hospitals in the United States.
“Children with drug-resistant epilepsy should undergo evaluation for all treatment options, with increased consideration of candidacy for cranial epilepsy surgery or neurostimulation such as vagus nerve stimulation,” stressed Dr. Lam, who also holds the Yeager Professorship in Pediatric Neurosurgery.
Research at Ann & Robert H. Lurie Children’s Hospital of Chicago is conducted through Stanley Manne Children’s Research Institute. The Manne Research Institute is focused on improving child health, transforming pediatric medicine and ensuring healthier futures through the relentless pursuit of knowledge. Lurie Children’s is ranked as one of the nation’s top children’s hospitals by U.S. News & World Report. It is the pediatric training ground for Northwestern University Feinberg School of Medicine.