Funding to Improve Diagnosis, Treatment and Services for Children and Youths with Epilepsy

The U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA) has awarded the Epilepsy Foundation of NJ (EFNJ) a three year, $1.14 M million dollar grant to improve the diagnosis, treatment and access to services and information for children and youths with epilepsy along with their families and pediatricians.

There is currently a lack of services for children and youths with epilepsy, a need for additional communication between primary care physicians and specialists, and a lack of current information for pediatricians about diagnosis and treatment of epilepsy as well as a lack of information about available resources for families of children and youth with epilepsy. EFNJ will partner with the Epilepsy Foundation of Connecticut (EFCT) and the Epilepsy Foundation of Northeastern New York (EFNENY) to provide broader reach in data collection, and allow geographic, socioeconomic and demographic impact comparison.

Epilepsy is more common than cerebral palsy, multiple sclerosis and Parkinson’s combined. It affects an estimated 3 million people in the United States. Thirty percent of those people are children under the age of 18 with 125,000 new cases reported each year. The Institute of Medicine’s (IOM) 2012 report entitled “Epilepsy Across the Spectrum” states that 1 in 26 people will develop epilepsy in the course of their lifetime.

EFNJ’s goal is to increase awareness of epilepsy and improve access to coordinated and comprehensive care for children and youths with epilepsy that promote early recognition, timely diagnosis, and access to appropriate care, particularly to underserved geographical areas and groups.

The primary component for improving access to appropriate care and timely diagnosis for children and youths with epilepsy is the forthcoming pediatric practice training Improving Accurate Diagnosis & Treatment of Epilepsy: A Training for Pediatric Practice Teams. The training will allow for pediatric practice teams to learn more about seizure recognition, diagnosis, treatment, and improved coordination of care and communication among providers. EFNJ, along with its Connecticut and Northeastern New York partners, will conduct 21 trainings at large pediatric practices and Federally Qualified Health Centers (FQHCs) in Connecticut, New Jersey, and New York.

The second component aimed at improving access to coordinated and comprehensive care for children and youths with epilepsy will be initiated by organizing parent focus groups which will allow parents to give valuable feedback about what services they are receiving and what services are needed.

The 2012 IOM report also found that despite recommendations to the contrary, less than one-quarter of patients with uncontrolled seizures see an epilepsy specialist and an even smaller number are admitted to an epilepsy monitoring unit for a comprehensive evaluation.

Low socio-economic status is also associated with increased prevalence of epilepsy. There are cultural and language disparities in the incidence of epilepsy. These disparities speak to additional barriers in getting proper medical attention for a large percentage of people with epilepsy. Therefore, much of the effort, focus and resources in each affiliate territory will be concentrated in medically underserved communities to reach the populations with greater need.

EFNJ will use multiple methods of evaluation including hiring an independent evaluation firm as well as utilizing internal resources for data collection, needs assessment, and learning collaborative to monitor the project’s progress in achieving goals and objectives.

The Epilepsy Foundation of New Jersey (EFNJ), an affiliate of the National Epilepsy Foundation and The Family Resource Network, provides services for families living with epilepsy, such as a residential summer camp, support groups, scholarships, referral programs and respite care. EFNJ also institutes free educational presentations about seizure first aid and police training. To learn more, please visit www.efnj.com.

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