Priorities in Pediatric Epilepsy Research: Improving Children’s Futures Today

In the August 23, 2013, published ahead of print in the journal Neurology, Doctors Berg and colleagues present a policy paper outlining priorities in pediatric epilepsy research and for improving children’s futures today. Although epilepsy affects one of 26 people in the United States, up to one-tenth of the lifetime risk of epilepsy is realized in the first three years of life. Results of a “Priorities in Pediatric Epilepsy Research” workshop were put forth and four priorities as well as a care model were proposed. The four priorities for pediatric epilepsy research include:

1. Patient outcomes, especially seizure control that includes behavioral, academic, and social functioning

2. Early and accurate diagnosis and optimal treatment

3. The role of involvement of parents, communication, and shared decision making

4. Integration of school and community organizations with epilepsy care delivery

Key factors influencing pediatric epilepsy include childhood impairments and seizure presentation, parents, providers, healthcare system and community systems. A proposed model of care was put forth – a sequential process from initial onset of seizures to referral for comprehensive evaluation when it is appropriate and needed. Barriers to care were also highlighted, which includes access to care and appropriate diagnosis.