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Newswise — Continuing education of non-specialists is crucial for improving and enhancing epilepsy diagnosis and treatment. Many countries lack enough specialists to care for people with epilepsy. Even in high-income countries, a significant percentage of people with epilepsy receive care from a non-specialist. And people with epilepsy seen by neurologists also visit their primary-care or family physician regularly; while the family physician may not manage these people’s epilepsy, they are an important part of the care network and may need to address epilepsy-related issues.

Most non-specialists receive little to no information about epilepsy during their initial training. In 2015, the World Health Organization's (WHO's) Resolution WHA 66.8 advocated the integration of epilepsy management into primary health care by training non-specialists in basic aspects of diagnosis and treatment of epilepsy.

 found that only 10% of primary-care physicians and 19% of family medicine specialists had any training in epilepsy management. Of the 228 non-specialists surveyed for the study, 83% wanted training in epilepsy care. Most respondents said they did not feel confident providing guidance on driving, employment, or sports to people with epilepsy, and most did not know how to manage epilepsy over time or during pregnancy. Although most were aware that people with epilepsy may also have anxiety or depression, only 25% said they could make psychosocial assessments of people with epilepsy.

There are no comprehensive data on how many countries have epilepsy-specific curricula for non-specialists, but an ILAE survey found that 60% of respondents were not aware of such curricula in their countries. However, 95% of respondents would support such curricula.

Courses and programs aimed at non-specialists, as well as community-based interventions, have been introduced around the world, including  in Asia,  in Africa and Asia,  in India, and  and  in Latin America.

Educating non-specialists in Latin America

Most Latin American countries do not have national policies or programs for epilepsy care. Primary health care is the predominant form of care, particularly in rural areas. There are significant differences in neurology training among countries as well. The area also is affected by multiple social determinants of health, including violence, forced or intentional migration, unsafe housing, cultural beliefs, political instability and inadequate food supplies, all of which can reduce access to health services.

In 2015, the Academia Latinoamerica de Epilepsia (ALADE) created a low-cost, regional, virtual course aimed at primary health care professionals. The eight-week course is offered in Spanish and Portuguese, with topics including epidemiology, diagnosis, classification, treatment, prognosis, social issues, and epilepsy policies. The course offers a final exam and certification.

The course continues to be offered each year, attracting nearly 500 people from more than 17 countries. A 2018 publication detailing the course noted its low drop-out rate (10%) and high satisfaction rate (98%). A post-course survey found that confidence in managing patients with epilepsy increased from 21% at baseline to 73% after the course

While non-specialists were prioritized at enrollment, at least during the first few years nearly half of attendees were specialists, seeking updated training. The 2018 publication emphasized the importance of collaborating with medical associations, ministries of health, and other organizations to better reach primary care physicians who would benefit from such training.

ALADE has since added courses for non-specialists in febrile seizures and first seizure. The Latin American region also offers an in-person course and, as of 2023,  through the University of Guadalajara.

Individual chapters also offer courses; for example, the El Salvador chapter developed a virtual course, “Epilepsy in the first level of health care,” which has been delivered to hundreds of primary care physicians. After establishing a relationship with the Ministry of Health, the chapter has been offering the course to 5 cohorts of 50 clinicians in different areas of the country. Differences in pre-test and post-test scores indicate that the course is very effective, said Ovidio Solano Cabrera, a vice president of the chapter.

“[Training] a few hundred physicians doesn’t sound like a lot, but for us, it is a lot,” he said. 

And because there are only three epileptologists in El Salvador, they have limited time to commit to outside projects. “It’s a lot of work,” said Solano Cabrera.

Pediatric Epilepsy Training

A 2024 study evaluated improvements in knowledge and clinical behavior among more than 7,500 health care professionals attending the British Paediatric Neurology Association’s (BPNA) one-day Paediatric Epilepsy Training (PET1) course between 2005 and 2020. This is the largest published evaluation of a pediatric epilepsy training course to date.

PET1 courses were initiated in the early 2000s, after several reports in the United Kingdom showed that most children with epilepsy were treated by non-specialists. Around the same time, a pediatrician was under investigation in England for misdiagnosing and overtreating children with epilepsy. The physician had no malicious intent, and his rate of misdiagnosis was the norm among non-specialists. Guidelines on diagnosing and managing epilepsy in children existed at that time, but the gap between policy and practice was wide.

More than 19,000 people have attended PET courses since they launched in 2005; the courses are now offered in more than 20 countries on five continents. Four course types are offered, with PET1 being the most widespread. The PET1 course curriculum is mapped to the  and the .

The study gathered data from participants immediately after they completed a PET1 course and then again 6 months later. Nearly all survey participants — 98% — rated the course as excellent or good. Knowledge scores increased from 75% before the course to 88% afterward.

A subset of participants was sent a survey on changes in clinical behavior 6 months after attending the course. Nearly all respondents — 98% — said the course had improved their clinical practice.

PET1 is now running in seven African countries. With support from ILAE and the Tropical Health and Education Trust (UK), the BPNA is working with faculty in Ghana and Kenya to take PET1 courses to more rural areas.

“It’s easier to start out in comparatively well-resourced places like capital cities, but some of the people we want to reach are in the more rural regions,” said Kirkpatrick. “We are trying to reach some of those healthcare workers who probably haven’t had any formal training in epilepsy care. And the idea is that we then train faculty members from those regions so that they can start running courses there, on a more sustainable basis.”

An outcome that exists, but is difficult to measure, is the extent to which the courses help build a sense of community or networks among professionals who care for children with epilepsy. Kirkpatrick said study results are encouraging.

“Our experience, both in the UK and internationally, is that people have formed informal networks,” he said. “We now have a series of regional networks across the whole of the UK that capture all of the healthcare professionals involved in the care of children with epilepsy.”

National impact

The impact of non-specialist courses can reverberate to the national level. Thirty-three BPNA survey respondents said they had developed dedicated epilepsy clinics after taking a PET1 course. Forty people developed new local guidelines for children with epilepsy, and nearly 300 people introduced or improved epilepsy training in their local hospitals.

A group of course alumni from Myanmar collaborated on standardized national guidelines for treating status epilepticus. In Brazil, course faculty lobbied the government to allow the import of buccal midazolam as a rescue medication for pediatric status epilepticus. And in Sudan, where PET1 courses were initiated in 2015 (but later suspended due to political upheaval), pediatric neurologists began to report significant changes in referral patterns.

“Rather than [neurologists] getting anyone who’s had a seizure, they were now just getting the complex cases,” said Kirkpatrick. “The pediatricians were much more comfortable looking after children with less complex cases. And that allowed pediatric neurologists to start focusing on other neurological conditions, where perhaps there had not been so much attention or teaching.”

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Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 125 national chapters.

Through promoting research, education and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.

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