Abstracts

Rationale: Seizure diaries used in clinical care are not standardized, lack integration with electronic medical records (EMR) and generally do not collect quality of life data. We evaluated the use of an online, caregiver-reported outcome monitoring tool to provide critical data between clinic visits for pediatric epilepsy clinical care management. Methods: We implemented an EMR-integrated, outpatient-based, caregiver-reported outcome monitoring tool that administers regularly-scheduled online caregiver questionnaires assessing seizure type and frequency, adverse events, and caregiver tool usage and experience (score range: 0-5). We evaluated quality of life and antiepileptic drug (AED) adherence using the Pediatric Epilepsy Medication Self-Management Questionnaire (PEMSQ, score range: 27-135; domains include epilepsy treatment and knowledge, AED adherence and barriers, and beliefs about medication efficacy) and the Pediatric Quality of Life Family Impact Module (PedsQL FIM, score range: 0-100). Between May 2015 and September 2016, we enrolled patients under 18 years of age with an epilepsy diagnosis who received care in an outpatient clinic at a pediatric tertiary care hospital. Results: Of 225 patients enrolled, 114 (51%) were male with a mean age of 10 (SD: 4.2) years. The monitoring system determined that median seizure frequency was zero seizures in 30 days, (n=188 patients with reported seizure data, IQR: 0-4) with absence seizures being the most common in 59 (31%) patients (Table 1). Of 193 patients on AED therapy, 110 (57%) were on monotherapy and levetiracetam was the most common (36%). Patient monitoring revealed that home rescue medications were not prescribed or unavailable at home in 46% (88/191) of patients; diazepam accounted for 48% of rescue medications, and that seizures required one or more rescue medications for 7% (13/180) of patients; diazepam administered in 5% (9/180). Side effects were reported in 71% (157/220) of patients (mean: 4 [range: 0-21] with fatigue being the most frequent in 35%. As a consequence of seizures, 17% (31/179) of patients experienced an inability to attend school. The PEMSQ median score was 125 (n=179, IQR: 118-130). PedsQL FIM median scores (n=174) for overall impact, caregiver health-related quality of life, and family functioning were 71.5 (IQR: 56.9-86.8), 74.4 (IQR: 60-92.5) and 78.1 (IQR: 62.5-100). Tool utility identified that caregiver worry had the greatest impact on caregiver functioning (median score: 50 [IQR: 35-70]). Caregivers (n=37) rated their experience of usage highly on clarity (mean: 4.8, SD: 0.5), ability to answer the questions (mean: 4.7, SD: 0.6), relevance of module content (mean: 4.2, SD: 1.3), associated time commitment (mean: 4.6, SD: 0.5) and willingness to complete periodic questionnaires (mean: 4.8, SD: 0.6). Conclusions: Standardized electronic collection of caregiver-reported information provides essential patient data on treatment response, AED adherence, quality of life and caregiver functioning that can guide individualized patient management as well established benchmarks and inform comparative effectiveness treatment. ERF Funded. Funding: Epilepsy Research Fund, INC.