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Objective: Epilepsy is a chronic condition that can affect patients of all ages. Women with epilepsy (WWE) require access to specific counseling and information regarding issues related to contraception, pregnancy, and hormonal effects on seizure control and bone mineral density. This study investigated the knowledge among WWE regarding their condition, and whether epilepsy-specific knowledge has improved over the last 15 years.Methods: A total of 280 WWE aged 18 to 82 years participated in this multicenter, questionnaire-based study. The study was conducted at four epilepsy centers in Germany, between October 2020 and December 2020. Sociodemographic and epilepsy-specific data for participating women were analyzed and compared with the results of a similar survey performed in 2003-2005 among 365 WWE in Germany.Results: The questionnaire-based survey revealed considerable knowledge deficits without significant improvements over the last 15 years, particularly among those with less education and with regards to information on the more pronounced effects of epilepsy in older WWE (>50 years), including interactions with menopause and osteoporosis. In WWE ≤29 years, a significant increase in the knowledge score was observed in 2020 compared with this age group in 2005 (mean 7.42 vs. 6.5, p = .036). Mothers frequently reported epilepsy-related concerns regarding childrearing, particularly of seizures scaring their child and the need to rely on other people.Conclusion: WWE continue to demonstrate inadequate epilepsy-related knowledge. Despite increasing information availability and the aspiration toward better awareness among medical professionals, overall knowledge has not increased sufficiently compared with the levels observed in recent studies. [ABSTRACT FROM AUTHOR]

Epilepsy is a common neurological disease, which affects people of all ages. Patients often have deficits regarding their knowledge of epilepsy. Many of them have recurrent seizures, psychosocial, and emotional problems and report restrictions in daily living as a result of their epilepsy. Meanwhile, a variety of psychoeducational programs have been developed with the intention to improve knowledge, coping with epilepsy, quality of life, compliance, and health status. This review article discusses the content and designs of formal patient educational programs for persons with epilepsy and reviews their role in improving patient outcomes. A systematic research of medical and psychological literature reveals that a sizeable amount of literature has been produced within the last decade that focuses on (psycho-) educational programs for adults, adolescents, and children with epilepsy as well as their families. These educational programs vary considerably in regard to content, didactic approach, and objectives. It is sometimes difficult to differentiate educational programs from psychological treatments or other interventions (e.g. by specialist epilepsy nurses). Information given about the theoretical frameworks guiding interventions, teaching strategies, and methodological approach of the programs is often sparse or lacking. The crucial point is that only very few educational programs have been evaluated in a randomized controlled trial. Furthermore, the methods of evaluation (e.g. questionnaires, inclusion and exclusion criteria, randomization, follow-up period) vary substantially and sometimes the number of subjects included in the study is too small for sufficient statistical evaluation. Overall, from the small number of evaluated programs it is evident that educational programs can improve epilepsy-related knowledge, improve the management of seizures, and reduce misinformation and misconceptions about epilepsy. They can support adults, adolescents, and children with epilepsy and their families and enable them to cope with the disease; they can sometimes also reduce seizure frequency and improve compliance with antiepileptic drugs. The effects on emotional disorders (e.g. depression) and quality of life are less obvious. Evaluated or standardized psychoeducational programs are available for specific target groups of patients with epilepsy. The review indicates that it is reasonable to perform or to adapt these educational programs for the benefit of the patients. Future research should focus on controlled evaluation studies of educational programs. [ABSTRACT FROM AUTHOR]

Education for patients, for families, for professionals, and for officials is one of the most important tools for improving knowledge about epilepsy and fighting discrimination. There are many educational initiatives worldwide, but they are often known only at a local level. Studies on epilepsy educational programs are rare and therefore published to a limited extent. The newly established International Bureau for Epilepsy (IBE) Education Commission enforces the exchange of educational activities and best practices, discussing education content and topics, target groups, and their educational needs, timing, tutors, and funding. A brief review of examples of all continents will be given. The needs for studies and for more exchange and closer cooperation will be addressed with proposals for further actions. • The newly established Education Commission of IBE presents examples of good educational practice. • Education on epilepsy focus not only to patients and relatives but also to the public and officials. • Target groups with educational needs are listed. [ABSTRACT FROM AUTHOR]