Development of a Pediatric Epilepsy Program: Analysis of Early Multidimensional Outcomes

Abstract

Background A Pediatric Epilepsy Program was instituted in Manitoba in 2016. This report seeks to describe changes in the management of pediatric epilepsy patients in Manitoba since the inception of this Program, to provide an early analysis of local outcomes, and to present a framework for further program development. Methods Data was collected for patients treated both before and after inception of the Program. Caregivers completed questionnaires on quality of life and program satisfaction. An online database was created to capture demographic information, seizure and quality of life outcomes, and caregiver satisfaction ratings. Descriptive statistics were used to summarize the results. Results Prior to commencement of the Program, 16 patients underwent vagal nerve stimulator (VNS) insertion. At last follow-up, 6.25% of patients achieved Engel class I outcome, 75% achieved class III outcome, and 18.75% were classified as class IV. Following inception of the Program, 11 patients underwent resective procedures and 3 underwent VNS insertions. At last follow-up, 78.6% of patients achieved Engel class I outcome, 14.3% achieved class III outcome, and 7.1% were classified as class IV. Since inception of the Program, the average Quality of Life in Childhood Epilepsy Questionnaire-55 score measuring patient quality of life was (59.7 ± 23.2)/100. The average Care-Related Quality of Life-7D score measuring caregiver quality of life was (78.3 ± 18.6)/100. Caregiver satisfaction had an average rating of (9.4 ± 0.8)/10. Conclusion Access to epilepsy surgery has significantly improved for children in Manitoba and has led to favorable, early multidimensional outcomes. Structural organization, funding, and multidisciplinary engagement are necessary for program sustainability and growth.