The long-term objectives of the proposed research are to deepen our understanding of the epidemiology of pediatric epilepsy in a geographic area with a racially and economically diverse population. Children in DC are among the most racially and socioeconomically diverse populations in the country, with approximately 66% Black, 18% white, 11% Hispanic and 5% some other race. A total of 29% of all DC children live below the poverty level, and almost 50% of families are run by a single head of household. DC presents a rich population for study to formulate policies and programs to address the needs of a vulnerable and potentially underserved population. To meet our objectives, the following specific aims will be addressed: (1) determine utilization of healthcare resources, responsiveness of health systems and obstacles to care experienced by children with epilepsy and their families, (2) characterize risk factors, outcomes and comorbidities related to prevalent and new onset pediatric epilepsy, and (3) reassess population-based estimates of epilepsy incidence and prevalence over a 2-year period among children living in DC. In support of Aims 1 and 2, we propose creating a cohort of at least 500 DC children with epilepsy. We will use a self-administered questionnaire to obtain data from the parents of the pediatric cases. This questionnaire will ask questions about personal history of epilepsy, types of care sought and received, comorbidities such as cardiac disease and sleep disorders, family history of epilepsy, and the family and social environment. To supplement these data, medical records will be abstracted for treatment schedules, medication use, epilepsy phenotype, and other health measures. Follow- up data collection is expected to occur every 6 months. In support of Aim 3, we will determine whether previously obtained prevalence and incidence estimates for pediatric epilepsy are accurate and stable over time. This will be performed by using an existing health screening tool, the Behavioral Risk Factor Surveillance Survey, used to obtain data on public health in DC and across the country. We will also examine DC-mandated public school immunization records, maintained by CNMC, that also include an indicator for epilepsy, to compare estimates of epilepsy in school-age children with that found in the telephone survey. Children with epilepsy are a socially and educationally vulnerable group. Characterizing epilepsy in the DC school age population will play a role in better defining the resources needed to provide essential health and educational services to an underserved population. As a community with such rich diversity, DC is an ideal geographical area to implement population-based studies of epilepsy. Results from our study may contribute to recommendations for changes in health policy and guidelines used by primary care providers and neurologists for treatment of children with epilepsy.
SOS-DC KIDS will deepen our understanding of the epidemiology of pediatric epilepsy and barriers to utilization of care, in a geographic area with a racially and economically diverse population. By defining obstacles to care and identifying needs of the family across a diverse metropolitan population, our study will provide a basis on which to build a more effective approach to pediatric epilepsy treatment in economically disadvantaged groups. Our research may lead to targeted initiatives that will address the deficiencies of care on multiple levels, such as in conjunction with primary care, early intervention, and education which will lead to better outcomes associated with seizure control, socialization, and comorbidities.
|Hesdorffer, Dale C; Beck, Vicki; Begley, Charles E et al. (2013) Research implications of the Institute of Medicine Report, Epilepsy Across the Spectrum: Promoting Health and Understanding. Epilepsia 54:207-16|