Abstracts

Rationale: A diagnosis of epilepsy in a child can dramatically impact the health and well-being of parents. The Seizures and Outcomes Study in Children (SOS-KIDS), was conceived to characterize the social and clinical outcomes, co-morbidities, risk factors, and family impact related to prevalent and new onset pediatric epilepsy in Washington, DC, a racially and economically diverse geographic area. We investigated the factors related to worrying about nocturnal seizures and the methods parents utilize to monitor for them. Methods: SOS-KIDS is an observational cohort study of pediatric epilepsy patients and their parents living in DC and evaluated at Children's National Medical Center. Patients are recruited at the time of their routine clinic appointment or inpatient visit. As part of the data collection, parents are asked to complete two surveys about the child's epilepsy and about the impact the diagnosis has had on their life. Results: 103 complete patient/parent pairs have been enrolled to date. Mean parent age is 36 years; 91% are mothers; 42% have not more than a high school education; 74% are Black; 19% are White; and 7% are Hispanic. There is significant concern about the possibility of nocturnal seizures (41% always worry [AW], 39% sometimes worry [SW], 22% don't worry [DW]). Worry affects sleep in 77% of SW and 92% of AW. Average hours of sleep per night were 6.7 (DW), 6.3 (SW) and 5.8 (AW). Severe fatigue was reported in 17.5% of AW, 7.7% of SW and 8.7% of DW. Parent quality of life was reported as fair to poor in 8.7% (DW), 30.8% (SW) and 29.3% (AW). Parent assessment of seizure severity was related to whether they worried about nocturnal seizures with severe reported in 4.5% of DW, 26.3% of SW and 48.8% of AW. Parents that do not worry about nocturnal seizures were more likely to do nothing to monitor for them (40%) although 45% said their child shares a room or a bed with someone. In the SW group, 7.9% did nothing to monitor at night and 58.1% of the kids shared a room or a bed. In the AW group, these results were 5.1% and 64.1%, respectively. None of the 103 parents reported using any device specifically designed to alert for seizures or movement. Conclusions: Worrying about nocturnal seizures has a significant impact on the parent's sleep, fatigue level and quality of life. In addition, over half of all children in the study shared a room or a bed with someone in order to be monitored for nocturnal seizures. Despite a handful of commercially available devices to alert parents to seizure-related movements, none were utilized in this cohort. Accurate and sensitive devices for alerting parents to seizures may help alleviate some of the worry parents experience about nocturnal seizures and their impact.