Abstracts

Rationale: : Epilepsy affects an estimated 2.5 to 3 million people in the United States, and approximately a third of people with epilepsy (PWE) have uncontrolled seizures. Being able to obtain appropriate health care is of the utmost importance in how well people with epilepsy can participate in regular daily activities. Seizure freedom, better control of seizures, good quality of life are all possible if provided with adequate care. This may ultimately result in lower costs not only to PWE but caregivers and the larger public. A review of the recent literature on access to care issues in epilepsy was undertaken to understand current reported issues in access to care. An informal survey was created to address each of these issues. Understanding what issues are at play in access to appropriate care for PWE will inform health systems, physicians, PWE, and policy makers on what needs to be changed and ultimately how to change things. Unfortunately, in epilepsy there has been little research in health services delivery. This led to a survey recently sent through the Epilepsy Foundation and the American Epilepsy Society.Methods: The survey was designed to determine barriers to access and treatment from the perspective of PWE, caregivers, advocates, and providers of epilepsy health care. There were two sets of similar questions created: 1 for physicians/providers, and 1 for PWE/care givers/advocates. Questions were reviewed for appropriate reading level and understandability for each group. The questions addressed the major themes of access and adherence to care, based upon the literature. Once the questions were finalized, the surveys were posted on the websites of Epilepsy Foundation (for patients) and American Epilepsy Society (for physicians).Results: As identified by PWE and their caregivers, the 3 most common challenges for PWE in getting to their epilepsy appointments are transportation, cost of doctor visit, and getting a referral from their primary care or neurology provider. Once at the epilepsy appointment, the top 3 difficulties to compliance with treatment plan include medication side effects, lack of health insurance, or insufficient health insurance to cover needed treatment. Physicians perceptions about PWE identified several similar challenges in PWE accessing the needed care, including transportation and health insurance coverage. Physicians also identified understanding of disease and attitudes and beliefs towards epilepsy and its treatments as barriers to accessing care and following care plans. Conclusions: Taken together, results from these surveys indicate several potential avenues for improving care with attention to principles of health literacy and education of PWE about their epilepsy and treatment options in a culturally sensitive and meaningful way by health care providers.