Strategies to Improve Health Care Outcomes for Children and Youth with Epilepsy in Medically Underserved and Multicultural Communities

Epilepsy is a seizure disorder that is estimated to affect more than 300,000 children under the age of 14. However, there is a greater prevalence of epilepsy among children in minority populations living in poverty than in the general population. Children living in underserved communities encounter far greater barriers including travel costs and time, lack of pediatric specialists, long appointment wait times, cultural differences and language barriers. To overcome these impediments, Project Access was designed to improve access to comprehensive, coordinated health care and related services for children and youth with epilepsy residing in medically underserved and rural areas.

The Health Resources and Services Administration funded state demonstration projects in seven states and the District of Columbia during Phase I (2004-2007), and Phase II (2007-2010) currently involves nine states. All states utilize the three-pronged approach (learning collaborative teams, continuous quality improvement strategies, and public education and awareness campaigns) incorporating HRSA's six core outcomes of a community based service system to improve the health outcomes of children and youth with epilepsy.

The states, each with different challenges and target populations, developed and implemented strategies to increase the effectiveness, quality of care and support for families. These ongoing efforts include using telemedicine, creating a seizure control network, developing a youth-to-adult health care transition plan, and piloting wrist band flash drives with medical record information. This project demonstrates the need for continued efforts to improve access to health care using innovative techniques and collaborating with state and local agencies, providers and caregivers.