Abstracts

Rationale: Epilepsy can have a profound effect on the physical and mental health and developmental outcomes of children. A diagnosis of epilepsy can also dramatically impact the health and well being of other family members and caregivers. Mental and physical health problems, as well as socio-economic issues, in caregivers may affect whether the child with epilepsy receives the proper medical care. SOS-KIDS, funded by the Centers for Disease Control and Prevention, 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. In addition, the study will examine utilization of healthcare resources and obstacles to care. Methods: SOS-KIDS is an observational cohort study of pediatric epilepsy patients and their families living in DC and evaluated at Children s National Medical Center. Children s National treats virtually all children in the city with epilepsy without regard to insurance coverage. There are approximately 880 children living in DC with active epilepsy. The target enrollment for SOS-KIDS is 500. Patients are recruited at the time of their routine clinic appointment or inpatient visit. Multiple forms completed at the time of enrollment, by or about the child, include an epilepsy survey, BASC self and parent ratings, standardized scales for depression, anxiety, anger, pain, fatigue, social relationships, and perceptions about epilepsy, medical record abstraction, including MRI and EEG reports. Caregivers also complete a survey about their well being, perceptions and impact of epilepsy, barriers to care of the child, and standardized scales for depression, anxiety, pain and social relationships and support. Saliva is collected on every child and biologic parent with consent and will be used for studies of genetic markers. Total subject burden at enrollment is about 1.5 hours. Annual follow-up will entail completion of shorter versions of enrollment forms.Results: The study was initiated in March 2013, and as of June 11, 90 children and their caregivers have been enrolled. The study has been well received and the refusal rate is low (n=6). Many eligible children scheduled for an evaluation during the recruiting period could not be enrolled because of missed appointments (n=45). A few others could not be enrolled due to language (n=2), literacy (n=1) or guardianship (n=4) issues. We are working to address these enrollment issues and follow-up with caregivers who missed appointments, as this population is the most vulnerable to poor utilization of proper care. Conclusions: Results from the study may contribute to recommendations for changes in health policy, formulation of new programs, and amendments to guidelines used by primary care providers and neurologists for treatment of children with epilepsy and their families.