Abstracts

Rationale: Epilepsy self-management is the sum total of steps taken and processes used by a person to control seizures and manage the effects of a seizure disorder (1). However, current measures have been limited by a lack of standardization and coverage of relevant self-care domains (2-4). The mission of the CDC Managing Epilepsy Well (MEW) Network is to advance the science related to epilepsy self-management by facilitating and implementing research in collaboration with network and community stakeholders, and to broadly disseminate findings (5). Researchers in the MEW Network have been working since 2009 to develop a self-management scale with intended use in research and clinical settings. The Epilepsy Self-Management Instrument is comprised of items that cover ten domains for epilepsy self-management for adults. The purpose of this study is to describe the development and initial testing of the instrument in a large, geographically diverse sample of adults with epilepsy. Methods: Instrument development followed 4 phases: 1) formative research of relevant self-management literature, 2) item selection/generation and review, 3) content validity testing with an expert panel, and 4) reliability and validity testing. The final draft of the instrument includes 113 items that represent 10 exploratory domains for epilepsy self-management: treatment, symptom, seizure, lifestyle, wellness, safety, information, communication, social support and stigma management. From October 2013 to February 2014, data were collected from U.S. adults with epilepsy. Participants were included in the study who: 1) had at least three months post diagnosis of epilepsy; 2) were 18 years of age or older; 3) resided in the United Sates; and 4) were able to read and write in English. Results: The overall sample (n = 422) was 73% female, with a mean age of 42 years. By race, 85% were white, 8% black, 1% Asian/Pacific Islander and 5% other. Most (55%) lived in suburban areas, and more than one-third had some college (38%) or higher education (43%). About 50% were employed, and only 8% were uninsured. Mean years with epilepsy was 21 years and 78% had had a seizure in the past month. Most common seizure types were tonic-clonic (51%), complex partial (45%), simple partial (34%) and absence (33%). Most were on seizure medication (96%) and were seen by a general neurologist (59%) or an epileptologist (46%). Seizures, memory difficulties and work limitations were the epilepsy effects reported as most bothersome. Medication, symptom, and seizure management behaviors were most frequently reported. Communications, social support, wellness and safety behaviors were least frequently reported. Conclusions: The Epilepsy Self-Management Instrument assesses a broad range of self-care behaviors. Further testing will continue to validate and test the items in diverse clinical populations. When the instrument is available publicly, clinicians and researchers will have a comprehensive measure with which to assess patient-reported self-management behaviors that could inform treatment and patient education.