Priorities in pediatric epilepsy research: improving children's futures today

Abstract

The Priorities in Pediatric Epilepsy Research workshop was held in the spirit of patient-centered and patient-driven mandates for developing best practices in care, particularly for epilepsy beginning under age 3 years. The workshop brought together parents, representatives of voluntary advocacy organizations, physicians, allied health professionals, researchers, and administrators to identify priority areas for pediatric epilepsy care and research including implementation and testing of interventions designed to improve care processes and outcomes. Priorities highlighted were 1) patient outcomes, especially seizure control but also behavioral, academic, and social functioning; 2) early and accurate diagnosis and optimal treatment; 3) role and involvement of parents (communication and shared decision-making); and 4) integration of school and community organizations with epilepsy care delivery. Key factors influencing pediatric epilepsy care included the child's impairments and seizure presentation, parents, providers, the health care system, and community systems. Care was represented as a sequential process from initial onset of seizures to referral for comprehensive evaluation when needed. We considered an alternative model in which comprehensive care would be utilized from onset, proactively, rather than reactively after pharmacoresistance became obvious. Barriers, including limited levels of evidence about many aspects of diagnosis and management, access to care--particularly epilepsy specialty and behavioral health care--and implementation, were identified. Progress hinges on coordinated research efforts that systematically address gaps in knowledge and overcoming barriers to access and implementation. The stakes are considerable, and the potential benefits for reduced burden of refractory epilepsy and lifelong disabilities may be enormous.

Figure 1. Current disease/care continuum of pediatric epilepsy

The typical sequence of steps taken from onset of seizures (step 1) to achieving optimal care of epilepsy (step 6A) in which specialty-comprehensive care is not sought until and unless difficulties occur (step 6B). Even when difficulties occur (failure to control seizures or developmental declines), referral to comprehensive care may not be sought immediately as physicians attempt to find a better treatment. The distinction between standard neurologic care and specialty care is also not clearly defined; there may be overlap and interactions between the two.

Figure 2. Comprehensive epilepsy specialty care first

An alternative model to pediatric epilepsy care in which specialty-comprehensive care is sought right from the outset to optimize patient care and outcomes. Children, particularly the very young, receive a full diagnostic evaluation. Disorders that can be identified and that have specific treatment implications are diagnosed and appropriately treated. More intensive treatments (surgery and diet) are considered early in the course of the epilepsy. AEDs = antiepileptic drugs.