Abstracts

Rationale: Youth with epilepsy are a vulnerable population, overall this patients have higher medical and mental health unmet needs. the objective of this study was to understand the needs of youth with epilepsy in Ohio. We hypothesized that youth with epilepsy and their families will have barriers to access medical, mental health care and increased educational services.Methods: Families of 359 youth with epilepsy (ages 0-18)answered a survey as well as providers (pediatricians, pediatric epileptologist,pediatric neurologist and psychiatrists). A select group of key informants were interviewed. Also two focus groups were conducted with minority families.Results: Families strongly reported that access to educational services was a major barrier for youth with epilepsy. Difficulties navigating the school system and being a good advocate for their youth with epilepsy was also a concerned in the parents. Epilepsy services were easily accessible specially in the major cities in Ohio, because of the proximity of academic institutions,families 76% reported it was easy to access epilepsy services. Ninety eigth percent of families felt empowered and involved in the decision-making for epilepsy and mental health services.Conclusions: There are important and under-recognized unmet needs in youth with epilepsy. Psychoeducation is a key piece to help families and youth with epilepsy to cope with some of the comorbities these patients face. Educating pediatricians, and primary care providers as well as other first responders (school nurses, other school personal) is very important to decrease the stigma and will improve access to mental health services for youth with epilepsy. Although many services are provided, parents and children don't know about them. Stigma continues to be an important barrier for families and youth with epilepsy.