Abstracts

Rationale: Seizure frequency is often the most prominent outcome measure used in epilepsy patients to provide feedback on treatment plans. We implemented an online, electronic medical record (EMR)-integrated, patient and caregiver-reported seizure diary to obtain seizure and medication monitoring data in pediatric epilepsy patients between outpatient visits. We assessed seizure diary usage, user satisfaction, and seizure diary-collected clinical data. Methods: Patients who received outpatient epilepsy care at a tertiary pediatric hospital and their caregivers were registered for an online seizure diary. The seizure diary allowed users to log seizure date, time, duration, type, and rescue medication administration as needed. We surveyed caregivers via telephone two weeks after registration to gather user experience feedback. The survey included questions regarding seizure diary content, challenges using the seizure diary, and preferences for tracking of seizure clusters as defined by caregivers.  Results: Of 78 patients registered with a median age of 11.5 years (IQR: 8-15, range: 0-26), 44 (56%) were female. Caregivers reported a total of 483 seizures with 29 (37%, 28 caregivers, one patient) users completing at least one seizure diary entry (Table 1). Median number of entries per user was three entries (IQR: 1-7, range: 1-190). These users reported a median of two (IQR: 1-7, range: 0.5-37.5) seizures per 30 days. Sixteen (21%) users logged multiple seizures with a median of 50 (IQR: 4.5-127.5, range: 0-190) days between first and last entry. The most common seizure type was “Whole body convulsive seizure (Generalized Tonic-Clonic)” reported in 232 entries (Table 1). Median seizure duration was 20 seconds (IQR: 12-57.5, range: 2-10800). Five diary entries indicated the administration of diazepam and two indicated that the caregiver did not have access to the necessary rescue medications (Table 1). The 13 entries that had a duration of five minutes or longer indicated that rescue medication was not necessary. We surveyed 58% (45/78) of caregivers registered for the seizure diary about their user experience. Fifteen of the 45 surveyed caregivers completed at least one entry and reported a favorable response to the seizure diary (Table 2). Reasons for not completing a seizure diary entry in the remaining 30 surveyed caregivers included: too busy to set up an account or use the diary 57% (17/30), no seizure events since registration 27% (8/30), caregivers prefer their current tracking method 7% (2/30), and other reasons 10% (3/30). Of the 45 caregivers surveyed, 29% (13/45) stated that their children have seizure clusters. Six caregivers preferred to log single clusters, six preferred to log separate seizures, and one caregiver did specify a preference.  Conclusions: An online, patient and caregiver-reported seizure diary can provide seizure type, duration, and rescue medication administration information between outpatient visits. Account registration and lack of caregiver time may be barriers to seizure diary use (Funded by the Epilepsy Research Fund). Funding: Epilepsy Research Fund