Abstracts

Rationale: We implemented a web-based, patient-reported data collection system designed to fill a gap in the electronic health record (EHR) through remote monitoring of pediatric epilepsy patients over time. The primary aim of this pilot study was to describe the utility of an electronic outpatient-based epilepsy patient monitoring tool. Methods: We included patients under 18 years of age with a diagnosis of epilepsy who received care in an outpatient epilepsy clinic at a pediatric tertiary care hospital between May 2015 and March 2016. Caregivers completed a baseline questionnaire about lifetime seizure history as well as seizure frequency and seizure-related adverse events within the past 30 days. We collected information about quality of life and barriers to medication adherence using two standardized electronic scales, the Pediatric Quality of Life Family Impact Module (PedsQL FIM) and the Pediatric Epilepsy Medication Self-Management Questionnaire (PEMSQ). Caregiver responses were submitted to providers electronically with interactive visualization of seizure frequency for review and documentation in clinical notes. A sub-sample of caregivers also rated their experience with the epilepsy questionnaire in five domains using a five-point Likert scale. Results: Of 127 patients included, 64 (50%) were female (median age 11 years; interquartile range (IQR) 7.5-14 years). Caregivers described 14 different seizure types (Table 1). Median seizure frequency for all seizure types was once in the past 30 days (IQR 0-3). 99 caregivers provided information about adverse events related to seizures: 6% of these patients visited the Emergency Department, 5% had a hospital admission, 1% were admitted to the intensive care unit and intubated, and 15% had a fall or injury. Rescue medications were required to stop seizures in 8% of patients. The median overall scores for the 135-point PEMSQ and the 100-point PedsQL FIM were 123 (91%) and 69 (69%), respectively (Table 2). Caregivers rated their experience favorably, with a median rating of 5 out of 5 in all domains (n=37). The median caregiver-estimated time required to complete the baseline epilepsy questionnaire was 15 minutes (IQR 10-20 minutes). Conclusions: A web-based pediatric epilepsy monitoring tool offers detailed clinical patient assessment and is highly rated by caregivers. This clinical tool shows promise in enhancing the EHR by providing comprehensive caregiver-reported seizure frequency, severity, and quality of life data to providers between outpatient clinic visits. Funding: Boston Children's Hospital President's Innovation Fund Award, Provider-Payer Quality Initiative, Epilepsy Research Fund.