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UrduMost research on status epilepticus has been conducted in high-resource countries. Lower-resource countries likely already bear a disproportionate burden of status epilepticus, due to larger epilepsy treatment gaps. Status epilepticus also is one of the main causes of death among people with epilepsy in low- and middle-income countries.
Though studies are sparse, some research indicates that delays to first-line treatment are longer in lower-resource countries. For example, a survey of health care providers in sub-Saharan Africa found that a 3+-hour delay until hospital arrival was common, and studies have found delays in hospital presentation between 16.6 hours (Senegal, 2000) and 44.7 hours (Ethiopia 2008).
Challenges in lower-resource areas – regardless of nation – include:
Emergency services – Such services may not exist or may be unpredictably available. Some first responders may provide only basic life support, and not have the knowledge, authority or resources to initiate empiric treatment.
Awareness and knowledge of status epilepticus — Emergency department personnel and primary-care personnel may know very little about how to diagnose or rule out status epilepticus, or how to begin or continue treatment.
Geography – A long distance between a person in status and a capable care facility delays diagnosis and management.
Medication availability – Medications to manage status may be severely limited or unpredictably available due to funding, distribution issues, or lack of perceived need by government. Medication options may be limited to older anti-seizure medications, and to only certain formulations.
Technology limitations – Most resource-limited areas do not have continuous EEG monitoring or other technology and personnel necessary to manage status epilepticus, particularly refractory or super-refractory status, as well as non-convulsive status epilepticus.
Lack of guidelines – Existing guidelines for status epilepticus are generally created through a high-resource lens. There is a lack of standard yet flexible protocols that consider the needs and realities of low-resource regions.
Lack of research – Research on status epilepticus, particularly clinical trials, is largely based on data from high-resource regions.
We talked with neurologists in four countries about how status epilepticus is managed where they are, and what improvements they believe would improve management in lower-resource areas.
Sri Lanka: Jithangi Wanigasinghe, University of Colombo
We have a national ambulance service, but its availability can vary. Still, that has improved over the past few years. But paramedics do not administer medication. They do retrieval, oxygen, and basic life support.
We have a national health care system and Sri Lanka is a small island, so getting to a tertiary care hospital is possible. From the primary care center, people go to second-level care and then if the need arises, they can reach a tertiary care setting. But access to service is in stages.
When it comes to optimizing care for status, we need to decide where medications should be available. I feel that in every setting where a patient might present with status epilepticus, we should have at least first- and second-line medications.
Once someone reaches a hospital, the non-availability of medication is an issue. All hospitals have diazepam for first-line treatment, but midazolam is not always available. If it is available, it is IV only. We have a problem with maintenance of drug supplies – there are constant issues.
For second-line medications, there is phenobarbital and phenytoin. Phenobarbital is not always available.
We don’t have any of the newer medications.
We find that timely administration of medication and moving to second-line treatment is a problem. And going from second-line treatment to refractory status epilepticus (RSE) is very difficult, because ICU access is almost impossible. So the use of IV midazolam often takes place in the non-ICU setting.
We do not have continuous EEG or other monitoring technology or technical support. Many resource-limited settings lack these. If the patient can go to an ICU for RSE, there are anesthetic agents available. But for RSE, most of the time there is a high rate of mortality.
I think there is a disparity between priorities in high-resource versus low-resource countries for managing status epilepticus. In our case, the first priorities are to save lives and give basic health care. The adverse event profile of a medication and its ease of delivery would definitely come second.
Research from high-income countries addresses their priorities, which is understandable. For example, in high-income countries, phenytoin has been replaced with fosphenytoin. And the priorities are among IV preparations that low-income countries don’t have: The ESETT trial compared fosphenytoin, valproate, and levetiracetam. They didn’t look at phenobarbital because, in high-income countries, the adverse event profile of phenobarbital does not warrant its use. But it is our primary second-line medication.
I fear that because of differences in the priorities, investigations in high-income countries compromise care in low-income countries. I don’t think it’s intentional, but guidelines no longer mention phenobarbital. So where do we fit in?
We need one voice to say “This is how you should manage status epilepticus” – and that voice should recognize differences in need and differences in availability of services. We need to recognize differences in approach and using what you have in the setting – that’s what is important, rather than a blanket recommendation.
If we can standardize the way the patient is managed, that gives permission for people to push for excellence in management.
El Salvador: Ovidio Solano Cabrera, Social Security Institute
There are ambulances and an emergency call system, but the [first responders] don’t really know what to do – they take the person to the first place they can find, and we have to hope that place has the resources and knowledge to treat them. We don’t have a formal emergency system, or well-prepared paramedics.
If there’s no ambulance available, the police will come. The police will take someone to the closest health care option, but they cannot provide any care. And some ambulances refuse to go to high-risk places. There is a lot of violence. They will say “We’re sorry – we can’t go there.”
People who go to an emergency department with a seizure often get an infusion of phenytoin. Every year, several times a year, I give a lecture on status epilepticus to emergency department personnel, but they keep doing the same things.
Physicians don’t recognize some cases and when they do, they don’t treat it well. There are many cases treated as status epilepticus that are not – people with functional seizures and other non-epileptic seizures. People in non-convulsive status are not treated, because there is no knowledge of what that is. It’s very common that we are asked about a patient on a ventilator who is in status epilepticus, but the referring physician doesn’t know it.
In the capital there are a few places that can treat people in status epilepticus. But in the rest of the country, that’s not the case.
Tunisia: Chahnez Charfi Triki, Hédi Chaker Hospital, Sfax University
We have some ambulances, at least in the suburban areas. If someone is in status, they are taken to the closest emergency room for initial treatment, and if they do not respond, they are moved to a tertiary hospital.
Sfax is the second largest city. We have IV diazepam, clonazepam, and phenobarbital . We have IV midazolam in the ICU, but no other formulations. Our hospital does not have valproate, IV levetiracetam, or lacosamide. There is another hospital here with an emergency department, and it has valproate.
We have the same treatments for status epilepticus now as when I was a resident, 30 years ago. The lack of local guidelines makes it difficult to convince the health authorities of what we need.
Three years ago, we had a meeting about how we manage status epilepticus in children, and there were pediatricians, pediatric neurologists, and intensive care specialists. We tried to establish a process for creating a guideline, but we were not successful.
We have difficulties with the other guidelines available, like the American Epilepsy Society guideline and the Saudi Arabian guideline. They mention treatments we do not have.
It would help if there were a general guideline, as well as two or three adaptations, to help regions like ours. If we could establish guidelines for Tunisia or at least for North Africa, we could then have discussions with the authorities. Without a guideline, it’s difficult to convince people; it’s more like a personal initiative and not a national initiative.
I think if we establish local guidelines, we can then ask for more treatments. We need a local guideline and at least one new anti-seizure medication, and then to establish a study to demonstrate its efficacy. Then we can ask for more.
Canadian Arctic (Nunavut): Marcus Ng, University of Manitoba
Geographically, Nunavut has three regions, and the region that’s serviced by the health care center where I am, the Kivalliq region, has about 10,000 people. The rate of status epilepticus there is in line with low- to middle-income countries, and it’s one of the highest published rates of status epilepticus, if not the highest.
There are lots of challenges to getting care for status epilepticus and they are quite systematic. If someone has a seizure in one of the communities in the Kivalliq region and they choose to seek care or someone brings them to care, there usually is a nursing station in each community. I’m not aware of a formal hospital facility. The nursing station might act as a clinic, and it would be staffed by a locum tenens (traveling physician). A primary care provider is largely absent, unless the traveling physician comes to the same community quite a bit and develops a rapport.
The locum tenens would have to seek additional medical advice or support to fly out the patient [via helicopter], and that’s when the interaction with non-Nunavut systems occurs. Health care is a provincial jurisdiction, so here in Manitoba things are run in a completely different way than in Ontario or Quebec. But the territories (Nunavut, Northwest Territories, Yukon) are not provinces, so in some way which I’m not an expert on, their health care is delivered through a federal mechanism, and there could be additional Indigenous mechanisms on top of or in parallel to the federal mechanism.
People [from Kivalliq] are flown to Winnipeg if there’s a medical need. They have limited facilities in Kivalliq to start status epilepticus treatment and make sure it’s effective. By the time they come here, they’re in RSE or super-refractory status epilepticus and they’re in the ICU. So we’re dealing with a last-minute intervention to avoid injury or death.
There’s definitely a time delay – there’s no way to beat a 1,000-kilometer distance. I think most people are treated in the nursing station or the Medevac or both, but it’s empiric treatment.
(According to a recent study, the average time from seizure onset to empiric treatment for people with status epilepticus in Kivalliq was 24 hours; the average time from seizure onset to EEG recording was 3.2 days.)
We have an ICU and we have EEG in Winnipeg. But the medical center in Winnipeg doesn’t have a geographic dedicated specialty neurology ward, and there is no epilepsy monitoring unit in Manitoba for adults. If you need any sort of long-term continuous monitoring or video EEG, you need to be flown out of the province.
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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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