Abstracts

Rationale: Optimizing direct care for current and future children with new onset seizures (NOS) or epilepsy requires a clinical “laboratory” where integration of clinical care, extensive education and clinical research can be tested and refined. The purpose of this effort was to develop and refine a clinic model for children with NOS or epilepsy to provide rapid multidisciplinary care and extensive education (to improve current outcomes) while conducting clinical research (to improve future outcomes).Methods: Various workflows were constructed and assessed with the goal of minimizing wait times for both initial/follow-up visits and in-clinic wait times, while maximizing opportunities for patient education and enrollment in research studies. Children (2 to 18 years) with suspected NOS or suspected new onset epilepsy and no serious chronic medical issues are eligible for the clinic. All patients have EEGs prior to the initial clinic visit. An epileptologist performs the initial assessment using standardized data collection while an experienced pediatric epilepsy nurse practitioner conducts follow-up visits. An epileptologist follows-up each patient at least on a yearly basis. Epilepsy nurses use both verbal and written methods to provide specialized education within the clinic setting with frequent follow-up telephone contact. Social workers are rapidly available to address needs as they arise. Research protocols were specifically built upon routine clinical practice. Research assistants attend clinic to enroll and conduct research protocols in the context of clinic flow. Results: During the past 4 years of active assessment and refinement, multiple changes to clinic structure and flow have been tried and revised. The clinic averages approximately 247 NOS first visits per year with 1425 follow-up visits. Currently, new patient evaluations are conducted within 7-10 days of referral. The overall long term seizure-free rate in this patient population for children with partial onset seizure is approximately 65% (Neurology, in press). The average time from arrival in clinic to leaving (for the last 55 follow-up patients) was 83 ± 26 minutes, with the average patient time with the nurse practitioner (for the last 59 follow-up patient visits) being 22 ± 18 minutes. Studies integrated into the clinic include recruitment for the Childhood Absence Epilepsy project (NIH NS045911, n=43), Blood Genomics of Antiepileptic Drug Efficacy in Children (NIH NS044956, n=300), Pharmacogenetics of Antiepileptic Drug Metabolism and Neurotoxicity in Children with Epilepsy (Epilepsy Foundation, n=501), as well as both longitudinal and cross sectional studies examining adherence to antiepileptic drug (AED) therapy, and psychosocial outcomes of both children with epilepsy and their parents, side effects of AED therapy, and overall health outcomes (e.g., seizures, quality of life). Conclusions: It is possible to design and refine an epilepsy clinic model that optimizes clinical care, patient education and clinical research. This design may be generalizable to other medical centers.