Brief video enhances teacher trainees' knowledge of epilepsy.

OBJECTIVE: Relative to the general population, children with epilepsy (CWE) demonstrate difficulties in aspects of cognition and mental health. Previous studies have found that teachers have poor knowledge about epilepsy, which may lead to inadequate management of CWE's comorbidities and seizures, potentially impacting CWE's school performance, social development, and safety. The current study aimed to evaluate whether a brief training program improves teachers' epilepsy knowledge. METHOD: Participants included pre-service teachers enrolled in the Faculty of Education at Western University (London, Ontario, Canada). There were no exclusion criteria. Pre-service teachers completed a questionnaire evaluating their experiences and knowledge of epilepsy prior to, and two weeks following, the training program. The training program consisted of a 10.5-min video and booklet that described the characteristics of seizures, seizure first aid, and the cognitive, psychological, and social consequences of epilepsy. RESULTS: Pre-service teachers' knowledge about epilepsy, seizure safety, and common comorbidities associated with epilepsy significantly improved after participating in the training program. Furthermore, pre-service teachers indicated greater self-reported knowledge about epilepsy and greater preparedness to handle a seizure in the classroom. CONCLUSION: The results of the current study demonstrated that a brief, cost-effective training program significantly enhances teachers' knowledge about epilepsy, seizure safety, and the comorbidities associated with epilepsy. Enhancing teachers' knowledge about epilepsy has the potential to improve children's academic and social success in school.

The road to a World Health Organization global action plan on epilepsy and other neurological disorders.

The World Health Organization (WHO) has recognized epilepsy as a public health imperative due to its occurrence at all ages in all regions of the world, its high impact on disability-adjusted life years and psychosocial aspects, and the accompanying stigma. The International League Against Epilepsy and the International Bureau for Epilepsy have established crucial collaborations with regional and global organizations to promote epilepsy as a treatable disease, close the treatment gap in care, education, and research, and eradicate stigma. In November 2020, the efforts of these three organizations-with support from WHO member states, the World Federation of Neurology, and the European Federation of Neurological Associations-culminated in the unanimous approval of a WHO resolution to create and implement an Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders. This unique achievement is built on more than 2 decades of collaboration and effort, and heralds extraordinary opportunities to work toward a world where no person's life is limited by epilepsy.

A live-online mindfulness-based intervention for children living with epilepsy and their families: protocol for a randomized controlled trial of Making Mindfulness Matter©.

BACKGROUND: Epilepsy extends far beyond seizures; up to 80% of children with epilepsy (CWE) may have comorbid cognitive or mental health problems, and up to 50% of parents of CWE are at risk for major depression. Past research has also shown that family environment has a greater influence on children's and parents' health-related quality of life (HRQOL) and mental health than epilepsy-related factors. There is a pressing need for low-cost, innovative interventions to improve HRQOL and mental health for CWE and their parents. The aim of this randomized controlled trial (RCT) is to evaluate whether an interactive online mindfulness-based intervention program, Making Mindfulness Matter (M3), can be feasibly implemented and whether it positively affects CWE's and parents' HRQOL and mental health (specifically, stress, behavioral, depressive, and anxiety symptoms). METHODS: This parallel RCT was planned to recruit 100 child-parent dyads to be randomized 1:1 to the 8-week intervention or waitlist control and followed over 20 weeks. The intervention, M3, will be delivered online and separately to parents and children (ages 4-10 years) in groups of 4-8 by non-clinician staff of a local community epilepsy agency. The intervention incorporates mindful awareness, social-emotional learning skills, and positive psychology. It is modeled after the validated school-based MindUP program and adapted for provision online and to include a parent component. DISCUSSION: This RCT will determine whether this online mindfulness-based intervention is feasible and effective for CWE and their parents. The proposed intervention may be an ideal vector to significantly improve HRQOL and mental health for CWE and their parents given its low cost and implementation by community epilepsy agencies. TRIAL REGISTRATION: ClinicalTrials.gov NCT04020484 . Registered on July 16, 2019.

Advocacy for children with epilepsy: Leveraging the WHA resolution. Advocacy Task Force, Commission of Pediatrics, International League Against Epilepsy.

In May 2015 the World Health Assembly (WHA) approved the Resolution on the Global Burden of Epilepsy. This report addresses how the Resolution can be leveraged to improve the care of children with epilepsy worldwide. Children with epilepsy have unique needs and face unique challenges from stigma at all levels of society. Children lack a voice to lobby for their own needs, including their right to have access to education. Effective leadership and governance should be enhanced through the support of stakeholders empowered to counsel, advise, and lobby for appropriate care. National health care plans should integrate primary and specialist care, and they need to be adapted to local specificities. Antiepileptic medicines should be widely accessible in appropriate, sustained, and affordable ways. Public awareness initiatives are needed to improve the inclusion of affected children in society and to reduce stigma. Cost-effective interventions are also needed to address preventable causes of epilepsy. Without greater investment in research, evidence-based interventions cannot be implemented. Through all of this, civil society must be engaged to ensure that the multivariate dimensions from the clinic to the community are addressed to fulfil the needs of children with epilepsy.

Epilepsy: Transition from pediatric to adult care. Recommendations of the Ontario epilepsy implementation task force.

The transition from a pediatric to adult health care system is challenging for many youths with epilepsy and their families. Recently, the Ministry of Health and Long-Term Care of the Province of Ontario, Canada, created a transition working group (TWG) to develop recommendations for the transition process for patients with epilepsy in the Province of Ontario. Herein we present an executive summary of this work. The TWG was composed of a multidisciplinary group of pediatric and adult epileptologists, psychiatrists, and family doctors from academia and from the community; neurologists from the community; nurses and social workers from pediatric and adult epilepsy programs; adolescent medicine physician specialists; a team of physicians, nurses, and social workers dedicated to patients with complex care needs; a lawyer; an occupational therapist; representatives from community epilepsy agencies; patients with epilepsy; parents of patients with epilepsy and severe intellectual disability; and project managers. Three main areas were addressed: (1) Diagnosis and Management of Seizures; 2) Mental Health and Psychosocial Needs; and 3) Financial, Community, and Legal Supports. Although there are no systematic studies on the outcomes of transition programs, the impressions of the TWG are as follows. Teenagers at risk of poor transition should be identified early. The care coordination between pediatric and adult neurologists and other specialists should begin before the actual transfer. The transition period is the ideal time to rethink the diagnosis and repeat diagnostic testing where indicated (particularly genetic testing, which now can uncover more etiologies than when patients were initially evaluated many years ago). Some screening tests should be repeated after the move to the adult system. The seven steps proposed herein may facilitate transition, thereby promoting uninterrupted and adequate care for youth with epilepsy leaving the pediatric system.

The impact of seizures on epilepsy outcomes: A national, community-based survey.

OBJECTIVE: The aim of this study was to examine the impact of seizures on persons living with epilepsy in a national, community-based setting. METHODS: The data source was the Survey of Living with Neurological Conditions in Canada (SLNCC), a cohort derived from a national population-based survey of noninstitutionalized persons aged 15 or more years. Participants had to be on a seizure drug or to have had a seizure in the past 5 years to meet the definition of active epilepsy. The respondents were further stratified by seizure status: the seizure group experienced ≥1 seizure in the past 5 years versus the no seizure group who were seizure-free in the past ≥5 years regardless of medication status. Weighted overall and stratified prevalence estimates and odds ratios were used to estimate associations. RESULTS: The SLNCC included 713 persons with epilepsy with a mean age of 45.4 (standard deviation 18.0) years. Fewer people in the seizure group (42.7%) reported being much better than a year ago versus those in the no seizure group (70.1%). Of those with seizures, 32.1% (95% confidence interval [95% CI] 18.8-45.3) had symptoms suggestive of major depression (as per the Patient Health Questionnaire-9) compared to 7.7% (95% CI 3.4-11.9) of those without seizures. Driving, educational, and work opportunities were also significantly limited, whereas stigma was significantly greater in those with seizures. SIGNIFICANCE: This community-based study emphasizes the need for seizure freedom to improve clinical and psychosocial outcomes in persons with epilepsy. Seizure freedom has an important influence on overall health, as those with at least one seizure over the prior 5 years had an increased risk of mood disorders, worse quality of life, and faced significantly more stigma.

From global campaign to global commitment: The World Health Assembly's Resolution on epilepsy.

Tuesday May 26, 2015, will be remembered as an historic day in the fight against epilepsy. On that date, the World Health Assembly approved unanimously the Resolution on the "Global Burden of Epilepsy and the Need for Coordinated Action at the Country Level to Address its Health, Social and Public Knowledge Implications," which urges Member States to implement a coordinated action against epilepsy and its consequences. This event, which comes almost 20 years after the establishment of the Global Campaign against Epilepsy, is another landmark in the longstanding collaboration among the World Health Organization (WHO), the International League Against Epilepsy (ILAE), and the International Bureau for Epilepsy (IBE) in addressing the needs of people with epilepsy. It also acted as a catalyst for other professional societies, including the World Federation of Neurology (WFN), to join forces in promoting a common action against epilepsy. The Resolution did not happen by chance, but came at the end of a long journey that involved the hard and tireless work of many dedicated individuals around the globe.

Knowledge translation strategies using the thinking about epilepsy program as a case study.

In many areas of health promotion and health care there is a need to bring new knowledge from research into practice (knowledge translation). Relevant research alone is not usually sufficient to achieve the ultimate outcome(s) of interest. This study aims to address this gap by outlining practices and outcomes involved in moving research findings into action using the example of the Thinking About Epilepsy program. A case study approach is used to discuss evidence-based principles and steps taken to translate evidence about the Thinking About Epilepsy program into action. Data used to inform this process include organizational documents, observations, and stakeholder interviews. Partnerships and techniques used for knowledge translation are discussed. The process of moving research knowledge into action is discussed explicitly in terms of who the policy makers are, what action is desired, the role of partners, and funding. Using a case study approach the authors have illustrated the importance of starting knowledge translation at the beginning, not at the end, of the research project. The principles discussed in this article can be extended past epilepsy and applied to move research findings relevant to other health conditions, health promotion activities, products, and technologies into action.

Evaluating the effect of a television public service announcement about epilepsy.

Public service announcements (PSAs) are non-commercial advertisements aiming to improve knowledge, attitudes and/or behavior. No evaluations of epilepsy PSAs exist. This study sought to evaluate a televised PSA showing first aid for a seizure. A multilevel regression analysis was used to determine the effect of the PSA on epilepsy knowledge and attitudes taking into account school-level clustering as well as individual-level variables, including socioeconomic status, gender, language and familiarity with epilepsy. Of the 803 randomly selected Grade 5 (9-11 years) students, 406 (51%) had seen the epilepsy PSA. Those who saw the PSA scored significantly higher on knowledge (P < 0.001) and had more positive attitudes (P < 0.001) about epilepsy. Those who saw the PSA had even greater knowledge about epilepsy 1 month later, even though the PSA was no longer being televised. Having viewed, the PSA continued to be associated with higher knowledge and more positive attitudes independent of the effects of a school-based epilepsy education program.

Development and psychometric properties of the Thinking about Epilepsy questionnaire assessing children's knowledge and attitudes about epilepsy.

OBJECTIVE: Epilepsy is the most common neurological disorder in the world, yet it is still widely misunderstood. A lack of knowledge and negative attitudes about epilepsy are largely blamed for the stigma felt by people with epilepsy and their families. Recent calls for research into stigma have been made by the World Health Organization and international epilepsy organizations. Our objective is to describe the development, structure, and psychometric properties of the Thinking about Epilepsy questionnaire. METHODS: A 36-item questionnaire was designed to assess Grade 5 (ages 9-11) students' knowledge of and attitudes about epilepsy and to evaluate changes in knowledge and attitudes following an epilepsy education program. The questionnaire contains 18 knowledge, 10 attitude, and 8 demographic questions. RESULTS: Psychometric properties of the Thinking about Epilepsy questionnaire were ascertained using data from 783 Grade 5 students. Three items (one knowledge item and two attitude items) were removed prior to the factor analysis due to their low extraction communalities. Factor analysis revealed a bidimensional structure (knowledge and attitudes) with five knowledge factors and two attitude factors. The questionnaire was found to have good internal consistency reliability (Cronbach's alpha=0.74 for knowledge and 0.82 for attitudes). Both the knowledge and attitude measures were deemed to have acceptable face, content, and construct validity. CONCLUSION: The final 33-item Thinking about Epilepsy questionnaire demonstrates adequate reliability for the knowledge measure, good reliability for the attitude measure, and excellent validity for both measures. The Thinking about Epilepsy questionnaire offers a viable option for assessing elementary school students' knowledge and attitudes regarding epilepsy in general or in conjunction with its affiliated Thinking about Epilepsy education program.