Newswise — Imagine if most children with cancer were treated by a doctor with no training or experience in cancer. It doesn’t seem possible. In epilepsy, however, it’s more common than not. That’s because pediatric neurologists are few and far between in almost every country; in some countries there are no specialists at all, or only a handful to serve millions of children. In addition, local medical personnel— pediatricians, family doctors, physician assistants and nurses—often have little training in, knowledge of or experience with epilepsy.
This phenomenon was known, and accepted, for many decades. Until a perfect storm of events in the United Kingdom began to change everything.
A turning point for epilepsy care
At the turn of this century, a report quietly released in London made clear that in the UK, most children with epilepsy were treated by pediatricians with no specialized training in epilepsy. This report followed on the heels of at least five similar reports.
At about the same time, a pediatrician in England came under investigation for misdiagnosing and overtreating children with epilepsy. Amid lawsuits and headlines, it was clear that this doctor had no malicious intent—and that his high rate of misdiagnosis was far from unusual among general physicians. At the time, only 62 pediatric neurologists served the entire United Kingdom, so most children with epilepsy would never see one.
Then a UK survey — The National Sentinel Clinical Audit of Epilepsy-Related Death — found that 77% of children who died with epilepsy had deficiencies in their care, and 59% of the deaths were avoidable. The numbers of children studied were small, but the conclusions were powerful.
Both the National Institute for Health and Care Excellence (NICE) and the Scottish Intercollegiate Guidelines Network had published guidelines on the diagnosis and management of epilepsy in children. Yet the reports, surveys and investigations highlighted a tremendous gap between those guidelines and everyday practice.
Pediatric neurologists and the British Paediatric Neurology Association (BPNA) realized that something had to be done to raise the standard of care, said Philippa Rodie, BPNA executive director. “The BPNA decided to train pediatricians to better diagnose epilepsy and treat it, and how to recognize when to refer children to specialists," she said.
The result was Pediatric Epilepsy Training (PET).
Providing training, reducing stigma
The BPNA established three courses: PET1, and PET2 & 3. The higher-level courses are specialized and are intended for pediatricians, nurses and trainees who wish to develop a specialty in epilepsy.
The association’s PET1 course casts the widest net. It’s aimed at all health professionals — anyone who may see or treat a child who could have epilepsy, said Rodie. “I’ve stopped talking about people’s job titles [as a requirement] for this course,” she said. “It’s not about the job title; it’s about people who see children.”
PET1 teaches how to differentiate between what is epilepsy and what isn’t, as well as how to distinguish among the different types of epilepsy. It covers treatment, referral skills, comprehensive care planning and a focus on the holistic care of the child—and the family.
“There’s a huge amount of stigma attached to epilepsy around the world,” said Rodie. “Kids end up being excluded from activities, and in some parts of the world they’re excluded from school altogether. The course encourages offering the family information to give to the teacher about what to do if the child has a seizure, or to the football coach or ballet instructor—so the child can lead a normal life.”
Courses are run by trained, volunteer faculty members — usually pediatric neurologists, pediatricians and epilepsy nurses — and are limited to 48 attendees. Each day-long course consists of lectures and smaller workshops that allow for interaction and multiple forms of learning.
In 2005, the BPNA ran the first PET1 course in the UK. By 2014, more than 4,500 people had attended.
Making a difference
Also between 2005 and 2014, the UK experienced dramatic improvements in pediatric epilepsy care, including annual decreases in incidence (presumably reflecting fewer misdiagnoses), improved adherence to nationally published clinical guidelines, and the establishment and expansion of epilepsy care teams, clinics and networks. PET1 courses have been cited as one of several pivotal factors underlying this sea change, and the Joint Epilepsy Council bestowed an award on BPNA for its efforts. The Royal College of Pediatrics and Child Health now requires PET attendance for any pediatrician who wishes to register with the National Health Service as having a special interest in epilepsy.
Besides their official endorsement, PET1 courses have real-world clout among health care providers. Though the courses are not mandatory, PET1 attendance is often a requirement on job descriptions for pediatricians who will be seeing children with epilepsy. And pediatricians themselves expect that colleagues who see children with seizures will have attended the course.
After a few years of running courses, it was clear that pediatricians in the UK were spreading the word to their colleagues around the world. The BPNA began receiving inquiries from other countries grappling with the same issues. In 2012, the BPNA began offering PET1 in Qatar. In 2013, it started courses in United Arab Emirates. In 2014, courses were established in India.
By the end of this year, 13 countries across 5 continents will be offering PET1: Brazil, India, Ireland, Ghana, Kenya, Myanmar, New Zealand, South Africa, Sudan, Tanzania, Uganda, United Arab Emirates and the UK. More countries are in the works, Rodie said, though “We have a longer list of countries that want these courses than we have resources."
How it works: Delivering PET around the world
How do countries begin delivering PET courses? It begins with an inquiry to the BPNA from a local pediatric association or ILAE chapter. That’s followed by discussion, a proposal and a signed agreement about running the courses (“memorandum of understanding”).
“The memorandum spells out what BPNA will do and what the association or chapter will do, so everyone’s clear about expectations,” Rodie said. “We have clear aims in line with local and national targets around the management of epilepsy.” The local contact recruits faculty, who must be affiliated with a local pediatric neurology association or ILAE chapter. “We look for people who are part of epilepsy networks, who are well trained, and who have credibility in the community,” Rodie said.
BPNA then travels to the country, trains the faculty and launches the first PET1 course, all in one go. On the first day, BPNA trainers deliver the course to the new faculty members. The second day is training day, on which new faculty learn how to teach the course. On the third day, with the BPNA trainers as mentors, the newly trained faculty deliver their first PET1 course to paying attendees.
To bring dozens of busy pediatricians together in one place for multiple days isn’t easy or inexpensive, so efficiency is key. “In India we had faculty leads in four cities, and they each recruited six to eight faculty members and brought them all to one site,” Rodie said. “We trained them all, so by the end of the three days, we had groups that could run courses in those four cities.”
Earlier this year, BPNA followed the same model in Kenya. “We had leads from Kenya, Ghana, Uganda and Tanzania — they’d each recruited faculty,” she said. “They all came to Kenya, we delivered the training there and they went back to their countries.” Ghana and Uganda have delivered two courses each to local attendees. Tanzania and Kenya have courses scheduled later in 2018.
Each group must offer a minimum of one course a year for five years. “Sudan, Ghana and Tanzania are running two courses, two days in a row,” Rodie noted. “That’s a very efficient way of running it financially, because the faculty have to travel only once, but they can deliver the course to 96 people.”
International cooperation
Shortly after its development, PET1 was updated every other year; now, it’s updated every three years. At the most recent review meeting, BPNA welcomed 21 reviewers from 12 countries.
“What we thought would happen [at the review] was that we’d get people from all these countries and they’d say, ‘We need to develop the course for my country like this’, but they found consensus – anything they needed to alter for their country, they discovered that other people had the same issue,” said Rodie. “We ended up with a generic course, with just a few specific changes for for certain countries.”
The ILAE formally endorsed PET in December 2017 and will be working with the BPNA to ensure its global research increases. The collaboration allows the ILAE and its national chapters to encourage and support basic epilepsy education to front-line health care providers through the expertise of the BPNA in areas of the world where there is a great need.
PET1 has been translated into Portuguese and Spanish for use in Central and South America. Brazil is the first country to use the translated course; it will launch its first PET1 course in September 2018.
Changing practice — for the better
The course is well-received by attendees. In post-course surveys, 99% rate the course as excellent or very good, and 95% said they would definitely recommend the course to colleagues.
Each attendee takes a quiz before and after the course, so BPNA can assess baseline knowledge and the course’s effect. Six months after each course, BPNA emails a survey to the attendees to measure their changes in attitudes and practice. “We want to see if what they’ve learned has made a difference on the ground,” said Rodie.
Here’s a sampling of results from 2017 surveys:
- 85% report improved diagnosis skills
- 82% report improved history taking
- 80% are trying to improve the way that clinical services are set up to support children with epilepsy
- 63% say they more quickly recognise when a patient needs to be referred to an expert
- 58% report they always provide first aid advice to parents and caregivers
- 57% have introduced changes that have improved information sharing in their unit
- 54% have introduced changes that have improved the management of prolonged seizures
PET in Africa
The need for pediatric epilepsy knowledge in Africa is acute; most countries have no pediatric neurologists, and the rest have only a few. For example, Ghana, with a population of 28 million people, has two accredited pediatric neurologists. At the same time, epilepsy is one of the major disease burdens across the continent.
In February 2016, 35 doctors from 10 African countries met in Cape Town for PET1 training. Jo Wilmshurst, head of pediatric neurology at Red Cross War Memorial Children’s Hospital, University of Cape Town, coordinated the training after seeing Sudan establish PET1. The idea was to rotate PET1 courses across key regions in South Africa.
Two years later, demand for PET1 in Africa had skyrocketed. A second training course took place in April 2018 in Kenya, resulting in enough trained faculty members to offer courses in Ghana, Uganda, Tanzania and Kenya. In 2019, they hope to offer courses in Ethiopia. By the end of 2018, Wilmshurst says, more than 400 attendees will have taken PET1 in Africa.
“The practical and concise nature of the course has a huge impact on providing pathways to empower health care practitioners to deliver better care,” Wilmshurst said. “Following the recommendations in the PET course enables standardization of the approach to many common situations in the care of children with seizures. This training has been lacking in Africa, and the enthusiasm of the clinicians illustrates the need for this intervention.”
Ghana
PET’s impact is powerful, agreed Charles Hammond, a PET faculty member and pediatric neurologist at Komfo Anokye Teaching Hospital in Kumasi, Ghana. As with most other countries, Ghana’s specialists practice in the major cities. Most children with epilepsy live hundreds of miles away, so they get care from pediatricians, general physicians and physician assistants.
Hammond viewed becoming a PET1 faculty member as an “excellent opportunity to improve my knowledge and skill in managing epilepsy in children . . . and bring knowledge to pediatricians and other doctors in Ghana who manage children with epilepsy.”
Kenya
In Kenya, the courses have already begun to change the way that pediatricians manage epilepsy care, said Pauline Samia, PET faculty member and interim chair of the Department of Pediatrics at Aga Khan University Hospital, Nairobi. “We hope to be able to impact medical officers in this region as well, given that only a small proportion of children have access to a pediatrician for their care,” she said. One clear impact of PET1 is that Kenyan physicians are now petitioning county governments and hospitals to provide a consistent supply of anti-epilepsy drugs.
Sudan
Ahlam Hamed attended PET1 training in India and has helped to oversee four courses in Sudan, where she is a pediatric neurologist at Soba University Hospital and associate professor at the University of Khartoum. “These courses enable us to distribute basic pediatric epilepsy knowledge—mainly, the wide range of non-epilepsy diagnosis possibilities and the limited diagnostic value of EEG,” she said. Hamed hopes that the increased knowledge of how to manage status epilepticus will engender support to bring buccal midazolam to Sudan (it is currently not available), as well as to reductions in morbidity and mortality.
Uganda
Angelina Kakooza-Mwesige has been involved with PET1 since 2016. Kakooza is a pediatric neurologist and lecturer at the School of Medicine, Makerere University College of Health Sciences, Kampala. She envisions a future in which the course has helped epilepsy knowledge increase in Uganda to a tipping point, after which “it will greatly improve the practice and standard of care for children with epilepsy in the region,” she said. “Children will obtain standard diagnoses and proper treatment, a full work-up of each child will be done and there will be cross-country consultations on difficult cases.”
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Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 100 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.
To learn more, visit our website, or find us on Facebook or Twitter.
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