Evaluation of emergency department-based seizure and epilepsy education: Exploring the need for early epilepsy self-management intervention

Abstract

Many people with epilepsy (PWE) present to the emergency department setting with their first seizure and must wait weeks or months to be seen by a specialized epilepsy provider. The time period between presentation of first seizure and entry into specialized care can be extremely stressful and precarious for PWE and their families. In order to achieve optimal outcomes, epilepsy self-management should be initiated as soon as possible, including in the emergency department setting. The purpose of this study was to review and evaluate existing epilepsy/seizure-related education materials provided to patients in the emergency room setting to determine the degree to which these materials prepare patients and their families for self-management of epilepsy, or potential epilepsy, during the interim between emergency department discharge and entry into specialized care. Twenty emergency department epilepsy/seizure patient discharge education materials were collected and evaluated using a rubric based on the framework of the Epilepsy Self-Management Scale (AESMMI). Materials were rated on a 0-3 scale based on the degree to which self-management education, resources, and skill building were included. The mean score of materials reviewed was quite low at just 10.4, with a score of 33 possible. Also concerning is that the materials scored lowest in the domains of social support, stress management, and coping, all of which are extremely important areas for PWE, especially in the early phases of the disease when patients and families are adjusting. Findings highlight the need for development of robust self-management interventions tailored to PWE in the transition period from presentation of first seizure to entry to specialized care.