Project Access: Improving Care for Children with Epilepsy
Epilepsy is the fourth most common neurologic disorder in the United States, affecting more than 2 million individuals and their families (Institute of Medicine 2012). Although the condition may affect people at any age, its highest incidence is among young children and older adults, and the most catastrophic forms of epilepsy occur in young children. Project Access provided grants to states and local organizations to improve access to comprehensive, coordinated health care and related services, including early detection and treatment, to meet the needs of children and adolescents with epilepsy residing in rural and medically underserved areas. It provided technical assistance to grantees and used a learning collaborative model to implement a continuous quality improvement strategy.
Our study sought to understand the extent to which Project Access and its grantees improved access to quality epilepsy services, and provided input on future planning for learning and improvement. Key short-term outcomes included developing effective and sustainable partnerships among families, providers, and professional organizations; improving family involvement and leadership in program planning and services; and enhancing the capacity of communities, and the medical homes within them, to provide children with epilepsy with coordinated, comprehensive family-centered care. We found that grantees accomplished many goals to meet the needs of families with children and youth with epilepsy, but they encountered common challenges during implementation and had mixed experiences with the learning collaborative. Process and quality improvement measures submitted by grantees represented an important first step in assessing their efforts, but there remains a need to establish more rigorous measures of outcomes to assess program impact in a meaningful way.