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Objective: Epilepsy is a common neurological condition that is often associated with stigmatizing attitudes and negative stereotypes among the general public. This randomized controlled trial (RCT) tested two new communication approaches targeting epilepsy stigma versus an education-alone approach., Methods: Two brief stigma-reduction videos were developed, informed by community stakeholder input; one highlighted role competency in people with epilepsy; the other highlighted social inclusion of people with epilepsy. A control video was also developed. A Web-based survey using a prospective RCT design compared effects of experimental videos and control on acceptability, perceived impact, epilepsy knowledge, and epilepsy stigma. Epilepsy knowledge and stigma were measured with the Epilepsy Knowledge Questionnaire (EKQ) and Attitudes and Beliefs about Living with Epilepsy (ABLE), respectively., Results: A total of 295 participants completed the study. Mean age was 23.1 (standard deviation = 3.27) years; 59.0% were male, and 71.4% were white. Overall, respondents felt videos impacted their epilepsy attitudes. EKQ scores were similar across videos, with a trend for higher knowledge in experimental videos versus control (p = 0.06). The role competency and control videos were associated with slightly better perceived impact on attitudes. There were no differences between videos on ABLE scores (p = 0.568). There were subgroup differences suggesting that men, younger individuals, whites, and those with personal epilepsy experience had more stigmatizing attitudes., Significance: This RCT tested communication strategies to improve knowledge and attitudes about epilepsy. Although this initial effort will require follow-up, we have demonstrated the acceptability, feasibility, and potential of novel communication strategies to target epilepsy stigma, and a Web-based approach for assessing them., (Wiley Periodicals, Inc. © 2017 International League Against Epilepsy.)

Objectives This exploratory study identifies barriers and facilitators to self-management to inform future epilepsy self-management interventions for persons who have epilepsy complicated by co-morbid mental health conditions and serious medical events. Methods Focus group methods were used in a series of community advisory board meetings. Analysis was conducted using a thematic, constant comparative approach aiming to describe the range of barriers and facilitators salient to participants. There were a total of 22 participants, including 8 health professionals, 9 patients with epilepsy, and 5 care partners. Mean age was 49.1 (SD = 11.0, range 32-69), 11 (50%) were female, and 11 (50%) were male. For those with epilepsy, mean years having epilepsy was 24.7 (SD = 19.9, range 1-58 years). Results Individual psychological barriers (mental illness, fatigue, and psychological distress) prominently interfered with health behaviors. Community and family barriers included stigma, lack of epilepsy knowledge, and poor social support. Facilitators included planning for seizures, learning about medications, stress management, socializing with others, and talking with other epilepsy patients. Discussion Qualitative evidence in this study suggests a linkage between social integration and positive health behaviors. Future efforts to embed patients with epilepsy and their caregivers into clinical care processes could offset barriers and enhance facilitators.

Objectives: Serious mental illness is disproportionately common in people with epilepsy and contributes to complications and mortality. Few care approaches specifically target individuals who have epilepsy and severe mental illness. We used an iterative process to refine an existing intervention and tested the novel intervention, Targeted Self-Management for Epilepsy and Mental Illness (TIME) in individuals with epilepsy and comorbid mental illness (E-MI)., Methods: The TIME intervention was developed with input from a community advisory board and then tested for feasibility, acceptability, and preliminary efficacy in people with E-MI, using a 16-week prospective, randomized controlled design comparing TIME (N=22) vs. treatment as usual (TAU, N=22). Primary outcome was change in depressive symptoms, assessed by the Montgomery Asberg Depression Rating Scale (MADRS). Secondary assessments included global psychiatric symptom severity, seizure frequency, sleep patterns, quality of life, stigma, social support, and self-efficacy., Results: There were 44 individuals enrolled, mean age 48.25 (SD=11.82) with 25 (56.8%) African-Americans. The majority (N=31, 70.5%) were unemployed, and most (N=41, 95.5%) had annual income

Objective: This systematized literature review identified reports describing epilepsy misconceptions in the developed Western countries and research interventions focused on reducing these misconceptions., Materials and Methods: English language publications from January 2004 to January 2015 that described original research conducted in Europe, North/Central/South America, or Australia on misconceptions about epilepsy among the general public were used for this review., Results: Eighty-one publications were selected. Most studies were conducted in the Americas (N=30) and Europe (N=31). Misconceptions and attitudes about epilepsy were assessed among clinical providers (N=9), family members of people with epilepsy (PWE) (N=5), teachers (N=11), students (N=22), and the general public (N=25). Most studies used structured questionnaires, sometimes adding open-ended questions. Misconceptions reflected socially exclusionary attitudes directed at PWE, ignorance about treatment, and overgeneralizations that are stigmatizing when applied to all PWE. Misconceptions were more prevalent in those with less education, lower socioeconomic status, and no exposure to PWE. There were only 12 intervention studies. While intervention studies were generally effective in improving attitudes, many were targeted to healthcare and education settings, were time-intensive, and impractical for broad general population implementation. None incorporated newer technology-based strategies regarding effective health communication approaches., Conclusions: Types of epilepsy misconceptions were similar in reports published over the last decade, although most referred to misconceptions that have already been previously described. Existing questionnaires may fail to identify more subtle forms of current misconceptions and negative attitudes. Few interventional studies specifically target epilepsy stigma. Practical and broad scalable approaches to destigmatize epilepsy may help reduce misconceptions., (Copyright © 2016 Elsevier Inc. All rights reserved.)

Objective: Epilepsy is a chronic neurological condition that significantly increases risk of injury and premature death. Rates of mental illness are also disproportionately high in those with epilepsy, which can be attributed in part to the stress and stigma associated with epilepsy. Psychiatric conditions generally complicate the management of epilepsy, and understanding how psychiatric comorbidity affects use of crisis-based health resources could inform care approaches that help improve epilepsy care. To better understand effects of psychiatric comorbidity on epilepsy burden, we conducted a 5-year retrospective analysis of data from a large safety-net healthcare network and compared the occurrence of negative health events (NHEs), defined as emergency department (ED) visits and hospitalizations, among individuals with epilepsy and mental illness (E-MI) vs. those with epilepsy alone (E)., Methods: Electronic health record (EHR) data from a large Midwestern U.S. safety-net healthcare system were queried to identify a study population of adults ≥18years with a diagnosis of epilepsy, with or without mental illness. We assessed demographic and clinical characteristics for each of the 5years and compared NHEs between subgroups with E-MI vs. E. An additional analysis focused on those individuals who remained in the healthcare system over the entire 5-year study time frame (January, 2010 to December, 2014). Annual and cumulative NHE counts and hospital length of stay for individuals with E-MI and E were assessed, as were hospital discharge diagnoses., Results: The number (approximately 2000) and demographic characteristics of individuals with epilepsy who received care each year of the study period was relatively consistent. In 2014, mean age of individuals with epilepsy was 48 (range: 18-95), 48.2% were women, 51.5% were White, 37.9% were African-American, and 8.6% were Hispanic. In 2014, there were 1616 (78.6%) individuals in the subgroup with E and 439 (21.4%) in the subgroup with E-MI. Most clinical and demographic variables between the subgroups with E-MI and E were similar, except that individuals with E-MI were less likely to be employed or commercially insured. Overall, NHEs were common, with over 1/4 (27.5%) of all individuals with epilepsy having an ED visit during the year, 13.7% having hospitalization, and 34.2% having either an ED visit or hospitalization. Individuals with E-MI had significantly more NHEs compared to individuals with epilepsy only, as evidenced by higher rates of any NHE (p<.001), ED visits (p<.001), and hospitalizations (p<.001). The cumulative differential in ED and hospital use between subgroups with E-MI and E was substantial over a 5-year time period. While most NHEs were directly related to seizures for the overall group, substance-use complications appeared as a top reason for hospitalization only in the group with E-MI., Conclusions: Individuals with E-MI made up just over 20% of all people with epilepsy in a safety-net system and had higher rates of NHEs than those without mental illness. Better and earlier identification of individuals with E-MI, assistance with self-management including helping individuals to optimize ambulatory care settings as opposed to the ED, and treatment for substance use disorders could eventually reduce NHEs in this vulnerable subgroup of individuals with epilepsy., (Copyright © 2015 Elsevier Inc. All rights reserved.)