International Disparities in Epilepsy Care: Social & Economic Effects of Epilepsy in Sub-Saharan Africa

More than 65 million people around the world are affected by epilepsy and its effects can be much more profound in underserved populations worldwide. For example, epilepsy in sub-Saharan Africa is more common than in the US and seizure disorders in Africa are associated with a high risk of early death from seizure-related injuries and status epilepticus. In addition, the epilepsy treatment gap, meaning the number of people with a chronic, active seizure disorder who are not on treatment, is 50-90+% in most African communities.

This webinar details the complex challenges to epilepsy care in sub-Saharan Africa at the community, clinician, and health facility levels. It also discusses potential interventions aimed at prevention of some common causes of epilepsy in Africa, including prenatal brain injuries, high automobile-related injuries due to poor transportation infrastructure, and cerebral malaria.

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Plus, learn more about the global impact of epilepsy and how advocates combat the epilepsy health crisis in the developing world in this episode of the Seizing Life podcast.

About the Speaker
Gretchen L. Birbeck, MD is the Edward A. and Alma Vollersten Professor in Neurology, Research Director, Epilepsy Division at the University of Rochester. Dr. Birbeck has served as a physician, medical educator, and researcher in sub-Saharan Africa since 1994. Her overarching professional goal is to understand common neurological disorders in the region. She also seeks to identify modifiable risk factors for these conditions and their secondary comorbidities so that feasible, affordable, evidence-based interventions aimed at preventing or reducing neurologic injury can be evaluated and broadly implemented.

The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

Q&A with Dr. Gretchen Birbeck

This question is about cerebral malaria. Is it more likely to cause seizures than neurocysticercosis?

Dr. Gretchen Birbeck: I don’t know that there’s been a head-to-head study. Neurocysticercosis in many ways is more heterogeneous, so people can have lesions in different places and the risk of subsequent epilepsy is probably based upon the location of the parasitic lesion. So I think it would be hard to do a head-to-head study. I think the location may matter as well, so obviously there’s limited cerebral malaria in, say, some areas of Latin America that have quite a lot of cysticercosis. We actually do have plenty of cysticercosis in Africa as well, so I think it’s probably just safe to say both are really contributing to the burden any time you get into low resource settings.

Why do you believe that stigma reduction interventions cannot be streamlined? Can you give examples of what hasn’t worked in the past?

Dr. Birbeck: So, if you examine the outcomes of the mass social marketing campaigns–not what they did but rigorous assessments evaluating whether they actually impacted stigmatizing attitudes. First of all, they weren’t terribly well studied, and when they were looked at usually the benefits were very short-lived. Those are very expensive things to do, and so they’re not really very sustainable.

My own group had looked at focused interventions in terms of epilepsy focused, epilepsy stigma reduction, but we identified power groups. So we worked very closely with people with epilepsy and came to recognize that rather than trying to decrease stigmatizing attitudes in the general population we might benefit the lives of people with epilepsy more if we targeted individual groups of people who have a big impact on the lives of people with epilepsy. We decided or determined that that would include people like teachers, clerics, healthcare workers, police officers because in areas where there’s no 911 if someone has a public seizure the police officer may be the person coming to the scene, and employers.

We did interventions with those groups and some interventions were successful, some were not. Some were even being scaled up, but again, the cost of these interventions and the cost of sustaining them really, really quite high. We’re trying to think about what could be sustainable if we could partner with other common stigmatizing conditions, the models of the stigma, the driving forces of the stigma being shared, and work with those conditions to do sort of broad interventions, I think the sustainability would be more likely. So yes, you can do focused interventions that are effective, but the question is sustainability and scalability. So to do them in one country really isn’t enough, we want to do them everywhere.

I can provide this after the talk, but we did an article, there was a whole series from the Fogarty International Center on stigma and this was published in Nature, and we really tried to make the argument about what these would look like, these sort of broader stigma reduction interventions that epilepsy could be one of the conditions that’s looked at. I do think if such interventions were sort of developed say by the World Health Organization or the World Bank and scaled up, those interventions would almost always include epilepsy amongst the conditions of interest because it is very well recognized I think even outside of the epilepsy world, that when you think about health related stigmatizing conditions, epilepsy is unfortunately the top of the pile.

On a related note, one of our audience members noted that there’s an advocate’s toolkit for making epilepsy a priority in Africa, and that can be found at That’s a great resource, and it sounds like we’ve got other resources that we can gather and share with this audience.

So another question. Can you tell us a bit more about the traditional healing methods that are used and if any of these have been researched?

Dr. Birbeck: I have to say we have been very fortunate where I work in that we have developed I think a very effective partnership with our healers in the rural areas. One of the things we discovered, it was actually in the setting of the ChEAFS study, that was the febrile seizure study which was requiring a cohort, a group of children that we would follow through home visits over several months was actually three years follow up, and in trying to determine what would perhaps undermine those follow ups, it was pointed out to us that if the traditional healers in the village didn’t want children to continue to be in our study they simply would pull out or be unavailable.

That was our original motivating factor to bring in the traditional healers and speak to them about what we wanted to do and take advantage of that situation to talk to them about how they conceptualize seizure disorders and epilepsy, et cetera, and it ended up being a very positive foundational way to work with this group.

The way they described their understanding, and again, this is one region of Africa, so I cannot claim that this is generalized, most of these rural traditional healers were from the communities, they had had some life event that had led them to be chosen to be a healer or believed to be a healer, and they have a very strong bond to their community, and I would say that they have a very strong therapeutic relationship with their population. That may be very different than some of the real scoundrels that kind of come through to make a bunch of money and leave.

With that group of individuals they really viewed a seizure as a problem. They would intervene and the seizure would stop, as seizures usually do, and then some people would go on to have more seizures, so we would call those persons who now have epilepsy, and those patients they really didn’t want to take care of because they didn’t think they could help them. So what they viewed their role as was to take care of acute symptomatic seizures, which are usually brief and usually go away, so they were usually successful. Then when people developed chronic seizure disorders they really didn’t think that they could help them, and they in fact once the therapeutic door was open they became very happy to refer those patients to us.

For the group that I’ve worked with, they actually don’t believe that they’re particularly effective at taking care of epilepsy. We do see them try and many of them will tell you that trying to refer patients to help centers and hospitals are difficult because of the cost to the patients and because often they will get to a health center and find there are no drugs anyway, so they traveled all that way.

The healers take excellent case history, so I’ll often see a patient come who has localization related epilepsy with sort of focal onset in one limb. That limb will already have tattooing or scarification. The healer who has actually obtained the history, they give sometimes rather magical explanations that make sense to patients. So if a patient has sort of an aura that is a rotten egg smell they will decide that the cause of the seizures was witchcraft and that eggs were used in the magic. So there’s a lot of reasons why their explanations and their management are sort of contextually very valid to patients.

What I find most reassuring is that when I work with healers closely, most of them are very happy to refer chronic seizure disorders to us because they feel like their intervention is with the acute symptomatic seizure, which again, is usually brief, is usually going to resolve, and many of those people won’t go on to have a second seizure or at least won’t have one for some time.

There are some healers that have particular herbs that they use and we have seen situations, usually in families that already have a family member with epilepsy and they have some traditional herbal teas is the household that are being given to that individual, where somebody with an acute symptomatic seizure will receive those. That can be problematic if sort of a hot tea is orally administered to some child in the midst of a febrile seizure because then you have oral burns, aspiration pneumonia, et cetera.

So, for those sort of mismanagement, which I might say is actually the family taking a therapy for somebody else and administering it to the child without the healer’s input, we have tried to do some public education about that to decrease the oral injuries and the aspirations that we’ve occasionally seen. But in general in the rural healers in Zambia what I found is once the therapeutic door is open they will continue in the community to manage acute symptomatic seizures that aren’t epilepsy, but refer epilepsy quite happily for care to the hospital.

Along the same lines, do religious leaders can they decrease stigma and reduce that evil spirit ideology?

Dr. Birbeck: It’s interesting. We did some early work trying to look at what the drivers of stigmatizing attitudes were in different important groups of people, power entities, and you heard me say that clerics are power entities, teachers are power entities. Each of the power entities we looked at–and we looked at teachers, police officers, clerics and healthcare workers–each of those groups had different factors driving stigmatizing attitudes.

You’ve asked about clerics. The clerics’ driver was whether or not they recognized epilepsy to be a stigmatizing condition–I’m sorry, to be a biomedical condition. So for healers who recognized that epilepsy was a brain disorder, it’s like having TB or a broken leg, you need to take this to the hospital. For healers who recognize epilepsy as a brain disorder and not being bewitched and not being possessed, those healers actually had pretty good attitudes. They were not stigmatizers. It was the clerics who were unaware of the biomedical basis of epilepsy who were stigmatizing.

It would seem that the ideal intervention would be to improve their knowledge. Now, that is one of the lines of investigation and intervention we did, so we did a series of intervention programs with clerics in a large swath of Zambia, and we were able to improve knowledge. Yet we didn’t improve attitudes and we didn’t change how they were handling people with seizure disorders in their congregations.

We went back to the drawing board and spoke to them in structured interviews and in-depth interviews to understand this better, and we’d fail most because they felt like they had to respond to seizure disorders in the way that their congregation expected and not necessarily congruent with their new knowledge. So, that is a group we actually failed miserably with.

Let me give you the success stories, since we’ve been talking about stigma reduction. So we were able to improve clerics’ knowledge but we could not change their behavior. They felt compelled to behave in a certain way based on congregational expectations.

On the other hand, for teachers we found that one of the primary, actually the primary driver was teachers are educated, they knew that seizures were a biomedical disorder. Whether or not they stigmatized, and I should state they stigmatize much less than the clerics, but their stigmatizing attitudes in terms of throwing kids out of the classroom, not wanting them in the classroom, thinking that they were not capable of some of the work was really driven by whether they had any personal proximity to somebody with epilepsy. So did they have a friend or a neighbor with epilepsy? And if they did, then they were much more accepting of the condition.

So our intervention with teachers was an educational program that took place over some days in a seminar center where people were attending the seminars full time and eating communally, pre-COVID, eating communally and staying in accommodations next to each other and coming to know each other, and the instructors were people with epilepsy, the teachers found this out at the end of the intervention. So much as the intervention looked like an educational intervention, it was actually a personal proximity intervention, and that was worryingly successful in terms of not only changing teachers’ attitudes and changing what they were doing, but actually also there was a knockoff effect with other teachers in their school sort of changing attitudes over time as well based upon interactions and education from that other teacher.

So we failed miserably with clerics, I’m afraid, but we did have more luck with some groups such as teachers, healthcare workers and police officers.

There’s a couple questions along this line: What are the best ways for nonprofit organizations outside of Africa to support African organizations to narrow treatment gaps and what areas are most helpful to approach first, is it diagnostics, medication, advocacy?

Dr. Birbeck: I think here your local partners have to really inform you because it’s really the situation on the ground, and it can be very different from country to country, it can even be very different from regions within the same country. Coming in from the outside I don’t think that we can really hope to understand what that is. I think that sometimes we come in with a list of what we think people could need, and the more open we can be to really allowing the true needs to come forward from the community that’s advocating on the ground the better. Sometimes the asks, the things they may need, might seem very unusual, but if you get the full details of what they’re dealing with it’ll be clearer. So I really think in these situations local partners have to guide us because you just can’t know from the outside.

Is there a line in Western medicine that people need to be aware of? Do we need to be more accepting and understanding of the traditional healing? Can we be wrong in our Western approaches or our Big Brother mindset?

Dr. Birbeck: I think we have to at least be open to what the healers bring in. I think I’ve had a different experience than many people because of my sort of home base and work really originating in rural areas. So, I really believe in the rural areas the vast majority of healers who come they are from the community, they originate there, they live there, and they really very much view themselves as being responsible for trying to improve the health of their community. They often get very little in terms of personal income or gain, but they get a lot of status in their community. I’ve learned over time most of those people have all the best intentions, and I don’t think I’m incorrect in that.

On the other side, in the urban settings, I’ve seen plenty of charlatans coming through and they’ll whip into a city and they’ll set up a clinic, and they’ll appear from nowhere, they’ll make outlandish promises, they’ll charge huge amounts of money, and as soon as they make enough trouble for themselves they sort of disappear quietly overnight with everything that they’ve made.

I think we have to just be open-minded about who we’re dealing with. I’d be very careful about sort of painting any group of people that are claiming at least to be trying to help individuals with seizure disorders as being bad just because of sort of a label they have. I think it’s healthy to have some skepticism and to learn more. I wouldn’t recommend sort of suddenly trying to support unknown groups that are providing traditional medicines, but there’s a lot to be said for the therapeutic benefit to the family.

Let’s say somebody has their first seizure. It’s a brief, unprovoked seizure, they may well go on to develop epilepsy. This is an intensely traumatic event for anybody anywhere, first seizure, right? It means a lot to that patient that their family seeks care for them, and it doesn’t matter that that care may be garnered from the traditional healer in the community as opposed to a primary care clinic 12 miles away, that they may not even know the nurse or clinical officer there.

There’s a lot of importance in the family unit and just people’s responses to such an acute traumatic event, of just the simple care seeking process and having healers in the community makes that possible. So I think we have to be open-minded and sort of willing to learn a bit more about what an individual is actually doing, what are their motivations for being in that community before we sort of decide that they’re either all good or all bad.

Is there a difference for children or adults with the first onset seizure? Is one or the other more likely to be referred for care?

Dr. Birbeck: It depends. So we have some data sadly to suggest that females in general are less likely to be sent for care in the African setting, and I think actually sadly they’re seeing this in the Nigerian study that I cited as well. So that sort of your value in the community, your value within your family probably determines how hard or how many resources are going to be expended to get care for you. So if you are a prime age adult male you’re going to do a lot better in terms of resource seeking and the family investing in that than sort of say a young female. So yeah, it goes along power differentials. The family wealth itself obviously makes a difference, but if you control for that, less valued individuals.

This becomes problematic if you think about let’s say somebody with comorbid cerebral palsy or some comorbid condition that may be playing a role in their seizure disorder. Somebody who is disabled may be very much devalued by their community. So maybe very unlikely to have care sought for them because that requires resources that even within the family nobody wants to invest. So yeah, unfortunately there’s differential care access, even at the family level.

What can people watching this webinar do? How can they support the cause? In fact, one person was interested in learning more about how to join research efforts and even your group.

Dr. Birbeck: There are groups like CURE Epilepsy, right? I mean, there you go. There are organizations that are already partnering with local organizations in communities doing important work. I think your best bet is to identify groups whose values and approach kind of resonate with yourself, because the more what they’re doing sort of seems in line with how you feel about the condition and what the priorities should be, I think the more positive feedback that you’re going to feel in your engagement.

Then think about what you do. I mean, I see some people on the line here, and there are EEG technicians, and people with those skills who sort of volunteer. There are people who give money there, people who give support to educational activities that are ongoing to try to build local expertise. I think there’s a lot of opportunities out there if you tap into everything that groups like CURE Epilepsy and ILAE and World Federation. If you have a particular location in the world that you have some connection to you might make some inquiries and say, “What’s going on in your community for epilepsy care?” And you may be astonished to find there’s a small group there, some grassroots group trying to advocate for or do something, and then you can do something more personal.

We’ve done things for Christmas gifts just within my university, where people can gift a goat. I know that’s a thing that some of the bigger organizations do, but we’ve been able to do it on a small basis, and yet it has a big impact locally because of the revenues that then support some of our patients who are really on the most dire end of poverty and really can’t afford medicine. So I think you have to kind of look for what works for you, but I think even a brief internet search and you will find lots of opportunities to get involved. Then I would just look hard for the ones that resonate most with you so that you can have maximal enthusiasm for following through and engaging.

Learn More

Seizing Life® Episode #34 – Acting Globally to Fight Epilepsy featuring Gardiner Lapham

On this episode, former CURE Board Chair and BAND Foundation trustee Gardiner Lapham speaks with current Board Chair Stacey Pigott about the the global impact and complex challenges of epilepsy and tells us how the foundation is helping combat the epilepsy health crisis in the developing world.

Disparities in Epilepsy: Overcoming Barriers to Improve Care and Treatment Outcomes

Our health is shaped by a combination of many factors such as the conditions in which we are born, work, and live, as well as broader forces and systems influencing the conditions of daily life. The differences in these social determinants across societies result in inequalities (disparities) in both health status and access to health resources, such as health care. Disparities in epilepsy have been identified based on factors such as socioeconomics, race and ethnicity, and address. Increasing awareness and knowledge of social factors in epilepsy is the first step to eliminating disparities and improving care and outcomes for all people living with epilepsy.

This webinar helps viewers define the social determinants of health and health disparities, how these translate to the epilepsy community, and how to identify strategies that can address disparities in epilepsy care.

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Hear from a mother about how her personal experience with healthcare disparities has impacted her daughter with special needs, and their experience with health care, in this episode of Seizing Life: Seeing the Whole Person: Disability, Race, and Healthcare featuring Sherri Brady.

About the Speaker
This webinar is presented by Dr. Magdalena Szaflarski, a medical sociologist and health disparities researcher. Her research focuses on barriers to optimal health for vulnerable populations including racial and ethnic minorities, low-income groups, and people living with chronic conditions. Dr. Szaflarski is joined by her research collaborator and spouse, Dr. Jerzy Szaflarski, an adult epileptologist and Director of the University of Alabama at Birmingham Epilepsy Center, for the Q&A portion of the webinar in an effort to address questions related to clinical treatment and care.

The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

Q&A with Drs. Szaflarski

Has there been research that shows evidence on the most effective types of awareness campaigns? I think we all know that we need to increase awareness of epilepsy, but one of the best strategies for doing that?

Dr. Magdalena Szaflarski: So first of all, I believe, based on my experience, that to develop any campaigns or any educational programs, it is necessary to have different groups represented. These types of interventions programs are most effective if they’re put together by different stakeholders working together, right? Because we researchers have our own perspective about how to do this, but we need to listen to the patients and families, what they respond to, and what is important to them. The same thing include healthcare providers and just lay people without epilepsy as well and see where the gaps in knowledge are and awareness and develop programs that work best. For example, in this day and age, in this year in particular, maybe webinars are way to go for some groups and some communities.

And we have health departments across the country doing different webinars for groups of stakeholders but also expanding some of these town hall meetings to whole communities and then people can communicate in that. But I think the essential part is to not only pull together evidence that would be presented to a community, but also have the stakeholders to weigh in on what is the most important information and how it is the best to present this information to others.

Dr. Jerzy Szaflarski: I wanted to add one thing from the clinical perspective, is important to recognize that most of the centers around the country, epilepsy centers, have patients symposia and patients are invited to come, clinicians meet with patients, present the most recent epilepsy data, but these symposia are also designed to listen to patients, to hear their concerns, hear what they need to learn from us so we can in many ways provide better education to our patients.

Can you help us better understand the reasons for regional differences in care and outcomes, for example, in the northeast versus the south?

Dr. Magdalena Szaflarski: So from the research perspective, we know there’s evidence that there is a growing number of cases of epilepsy, and specifically uncontrolled epilepsy in the south. So the term the epilepsy belt has been borrowed from the term the stroke belt in the south. So looking at the regions where there is a high prevalence of neurological disorders and looking at the reasons for it, and in the south, it is the whole area has been plagued by very high rates of health problems, including neurological disorders, but also we have higher rates of poverty and we have high numbers of minorities living in this area. This, and also access issues, can be compiled to contribute to both, I think, the occurrence of epilepsy, but also the trajectory for people with epilepsy to get into care and treatment. I’ll let Jerzy elaborate a little bit farther because he, with his colleagues, also did different additional research on this so-called epilepsy belt.

Dr. Jerzy Szaflarski: So I think the most important factor is that the risk factors for developing epilepsy are very similar to risk factors for developing stroke. So there will be overlap, but we are recognizing now… And I think first time I saw the term stroke belt… I’m sorry, epilepsy belt, was about seven or eight years ago in one of the papers from my colleagues. The risk factors are in many ways similar and access to care is limited, hence what we see is that the conditions in some ways get… maybe not the best word is neglected, but certainly don’t receive as much attention as other conditions, like for example cancer. And access to care is another reason why there is increasing disparity in the care that patients with epilepsy receive.

I actually made that comment a few days ago that the change to telehealth and telemedicine that I’ve been promoting in Birmingham for the last five or six years has actually made access to care better and we see that the participation of patients in their care is much, much better from what we saw about 30% of no-show rates to now about maybe 5% no-show rates. So we are actually providing more care now than we were providing before, which is one of the very few positive things of this pandemic. So that’s certainly is something that we see. However, what we also looked at was the disparities in the care the elderly receive, so Medicare beneficiaries. The interesting part was that although the care that the Medicare beneficiaries receive is very similar across all racial groups, actually the existence of comorbidities drives that the cost of care, especially in patients of African-American descent. So that creates another disparity that we have observed here in Alabama at least.

What should be the role of government, health providers, and pharma industry in trying to equip liberate equal or similar access to health? What about providing health education? Which one do you believe is more important or more probable to reach the target population and have positive impacts to ameliorate these disparities?

Dr. Magdalena Szaflarski: Let me start with maybe the partnership between government, health agencies, federal agencies, and pharmaceutical industry. This relationship is very important. So Jerzy and I come from Europe where there is much higher occurrence of negotiation between the government and pharmaceutical industries and basically the prices of drugs are lower than in the United States where the pharmaceuticals are more independent, I think, and they can dictate the prices of drugs. So somehow you look at the models around the world, it would be important at implementing developing models for the United States, where there’s a closer relationship, where there is more regulation basically on pricing of drugs and I think that really helps. The United States has a long way to go, but we have seen these efforts, I think, at the federal level, the government trying to negotiate the prices of drugs in the United States.

And it’s possible, other countries have done it, so we just have to learn about those models and try to implement some here. But for that, we need public advocacy, right? We need to encourage our government to do this kind of activity and work on our behalf to reduce the prices of drugs. So that’s one way to address this question.

There are two, I think, ways of looking at [improving health education]. One is education of patients and families and then the second is educating the wider public about epilepsy. So on the first front, I think healthcare providers as well as advocacy groups, organizations, provide a great platform for educating patients about new treatments and having this relationship between providers and researchers, epilepsy centers, and organizations like CURE and others, epilepsy foundation, and so on, to create the platform for dissemination of information. While the information for patients and families could be more specific in terms of treatments and also any axillary maybe services available to patients and families within a healthcare setting is important, then on the public level, we’ve seen educational campaigns through the media educating about what epilepsy is and maybe what to do in case somebody sees a person seizing with epilepsy and so on, right?

Knowing more about epilepsy and its source, that it is… in some cultures, it’s still considered… the source of epilepsy is not well known and so there are maybe these spiritual beliefs about epilepsy that exists in certain communities and there is a taboo in terms of talking about epilepsy and also isolating individuals with epilepsy from the larger community. So the more the public knows about what epilepsy is and how to respond and how to improve the treatment of people… treatment, I’m talking about the social relations with patients affected by it and families. So that kind of education is also very important and can be done both by the health agencies, public health agencies, but also private foundations and advocacy groups.

Who is an international organization? Is there a US agency or office that oversees and/or coordinates initiatives to address epilepsy healthcare disparities?

Dr. Jerzy Szaflarski: I think that the most international organization that addresses these issues is International League Against Epilepsy and the American Epilepsy Society is part of the International League Against Epilepsy. International League Against Epilepsy provides not on the education at the provider level but also at the patient level. So it can be accessed through multiple resources, either through webinars or through lectures or through other resources that are available on the International League Against Epilepsy webpage.

But within the US government, there really isn’t an agency that oversees this?

Dr. Jerzy Szaflarski: Not that I’m aware of.

Dr. Magdalena Szaflarski: The Centers for Disease Control and Prevention, the CDC, has a small division of mostly researchers but also public health workers that focus on epilepsy, and there are some research funding opportunities and intervention development opportunities through the CDC. They’ve done a nice job trying to garner some funding and also they are a source of very great data in epilepsy. We can find it on the web, at the and look for epilepsy information and their statistical information. There’s basic information about epilepsy, what it is as a disease, but then also statistical information about how many people are affected and some additional things about healthcare and treatment. So the CDC is a good source. Then at the local public health departments level, in some areas geographically, there is some focus on epilepsy as well, and there could be a small sources of local epilepsy data through health departments around the country.

Okay. Terrific. I know the CDC group is very interested in raising awareness and ensuring that it continues to be funded to do this important work.

Dr. Magdalena Szaflarski: Right. I see a comment there from Sarah Franklin here at the Epilepsy Foundation, Alabama, that obviously the Epilepsy Foundation has done tremendous work as well to educate and to disseminate information.

Right. Absolutely right. Yes, the advocacy groups play important roles. So a question; in terms of disparities, many people with epilepsy also have intellectual and cognitive challenges, are there studies that have looked at the particular challenges and opportunities for this population?

Dr. Jerzy Szaflarski: There are number of studies that look at the challenges, especially controlling the seizures but also creating a safe environment for patients with epilepsy who have intellectual disabilities, whether this is home environment, whether this is a group home environment, whether this is institutional environment. I’m not aware of any studies that look specifically for other opportunities outside of providing better care and better seizure control for these patients that I may be able to say more about that.

Dr. Magdalena Szaflarski: I would say that evidence is limited, they’re small studies, and it’s sometimes hard to extrapolate to larger populations. However, I think where we need to pay most attention is we have this large population of patients with uncontrolled seizures and there are many cases among those where there could be improvement if only the right treatment was applied. So one of the issues is that people don’t always have the access to the best maybe advanced epilepsy care. If we can improve the care and improve the outcomes in terms of seizure control especially, then I think the people who have additional comorbidities or intellectual disabilities, mental health issues and so on, their additional problems could be better addressed as well.

It’s been suggested in the literature, but again, the studies are limited on multi-disciplinary groups, teams, at medical centers and healthcare settings working together, so that you can have epileptologists working together with a mental health specialist, with a psychologist, with a social worker, and that their referral system is easy through the healthcare setting to help these patients and families. I think there’s much more work to be done to understand how these systems of multidisciplinary teams is working and where the gaps are and how to maybe expand that area to provide better overall holistic care to these patients.

Dr. Jerzy Szaflarski: One important aspect that I wanted to add is the transition of care, so something that we see more and more emphasis on when pediatric patients are transitioned to adult epilepsy care. And that is really in every aspect of medicine, we see expansion of the transition of care programs because there are very unique needs that the pediatric patients have, and when they are transitioning to adult care, their needs may not necessarily be changing if they have multiple handicaps. And that is very important. It’s very strongly supported in epilepsy care by the American Academy of Pediatrics in collaboration with the American Academy of Neurology and there are multiple centers around the country that are investigating the most adequate or the best pathways for transition of care. I think that’s an important aspect of that discussion.

Dr. Magdalena Szaflarski: I would like to add one more thing. Sometimes we usually think about the patients, persons affected by a disease such as epilepsy, but I think more work need to be done to understand the situation and experiences of the family, especially the caregivers. We have recently done a nice study of caregivers of people with treatment resistant epilepsy and to understand how they are fairing, and they do not fare so well. Some things that they indicated they would like to see is more support for the caregivers to have places where maybe you can provide care even for an hour or two for a patient so that the caregiver can have an hour or two for themselves to basically recoup and try to relax and so on. So giving more attention to the caregivers as well, especially in those severe cases of epilepsy is important and improve their quality of life as well.

How is patient satisfaction or rating of neurologists factored into the research? Patients without neurologists may have negative experiences with providers and some people give up. So how is that factored in as a social determinant?

Dr. Magdalena Szaflarski: Again, there’s very little systematic research on this, but I think what’s important is to think how much we have to go in terms of changing the culture among healthcare providers somewhat to address specifically social determinants of health, such as different social statuses that their patients may have to be more aware of their socioeconomic status and race and gender playing a role. And I think that education of medical trainees in this area is very important and I think medical schools are actually doing it more and more these days to produce neurologists and other medical doctors who are more compassionate and who understand the barriers that patients may have, also to understand their own biases they bring to the profession and to the care being from different social backgrounds.

And the self-reflection is very important because that is something that could influence the relationship between the provider and the patient and the family and strengthen both not only each other’s understanding, but then having better communication about treatments and also empowering the patients on this treatment journey. So there are some factors there to consider for sure. In terms of just neurologists, I’m not sure in terms of rating neurologists and how people feel about it. But what we know, for example in terms of race, generally in medicine, that patients prefer to have a provider that is from the same racial and ethnic background, right? They have a better understanding if the provider is similar to who they are. I mean, we are lacking a minority neurologists in this country.

There are very few racial ethnic minorities that go into this specialty and so we need to focus on how to attract people from different racial ethnic groups into the profession because then we can serve the patients better through this.

Is there information about disparities in participation in epilepsy support groups across the country? Is there some strengthening that can be done there?

Dr. Magdalena Szaflarski: I have seen many studies on social support groups, and in specific programs in specific healthcare settings, they seem to be working well. What I have not seen is research across different healthcare settings and how social support groups across different healthcare settings work. Also, you have social support groups outside of the healthcare system, right? So you may have them through advocacy groups and more and more so through social media and networking. You have social media outlets where groups of people with different types of health problems can get to get together and help each other. Right? So there are support groups forming online these days as well. But there is no systematic research, there are small studies here and there, so there’s a lot to be done in terms of gathering evidence and to see where maybe improvements can be made and how. And we can have different groups, we can have families with patients, we can have those patients who can communicate well with others, could participate separately, and then you can have caregiver groups as well or maybe providers and patients together. So there are different types of models, I think. It could be thought through and some of them I’m sure are already implemented and used in different settings. But there’s a little systematic evidence about that except to say that they are working well in specific settings.

Dr. Jerzy Szaflarski: I think it’s a very important comment about patients working with patients. I used to practice in Cincinnati now I practice in Birmingham, but I see… and patients ask the question many times, “Doctor, you are advocating for me to have epilepsy surgery. That’s great, is there a patient I could talk to?” And in both centers, we had groups of patients we could refer to patients to. They wanted to be informed, they wanted to hear from other patients who had questions and explain their experiences with epilepsy surgery. And that’s actually very successful. Many patients who are very hesitant, after they talk to others and have better understanding from the patient’s side, they are much more willing to undergo the evaluation and then eventually epilepsy surgery, there are candidates.

So patient-to-patient discussions are very important. 20 years ago, there was no Facebook, so this was okay. “Here is the phone number of so-and-so, please call them if you’re interested.” Today, there are Facebook groups, there are multiple other venues where patients meet and discuss these things. We know about it because we hear from the patients or we hear from people who run these groups, whether this is Epilepsy Foundation, whether this is other group of people taking cannabis for the treatment of seizures who want to learn more. There are multiple groups like that where patients get information and they come to us then to verify it or say, “Well, you said this, but they said this. What are we supposed to do?” Then of course we are in the middle answering questions, but that’s great because that also forces us to address the patient needs and their questions in more detail.

In your opinion, why do African Americans have less advanced treatments?

Dr. Magdalena Szaflarski: Multiple factors are at play. One is that trust between the provider and the patient seems to be an issue for racial and ethnic minorities. One explanation is, of the past treatment of minorities in medical research, we know that there have been abuses of patients in clinical trials, the syphilis Study, for example, the Tuskegee Experiment. So within African American community specifically, there is still some mistrust after all these years of the medical profession, of medical treatments and so on. So medical centers specifically have been doing a lot and building trust in the community, especially in large urban centers where there are large populations from racial ethnic minorities. Outreach efforts are underway in those big cities trying to educate minorities and give them opportunities to be more active in seeking healthcare and to even collaborate and partner with medical centers and community health interventions.

So mistrust is a problem. The other thing is that some research shows that African Americans have lower levels of knowledge about medical treatments. And we don’t know exactly why that is. It could be that they have less contact overall maybe in terms of the temporal dimension, not spending enough time with your physician to actually learn, to increase their health literacy through interactions with providers, and maybe it’s the provider that are at fault a little bit not being forthcoming with information about advanced treatments thinking maybe that they’re not maybe appropriate for these specific groups or something else. So there are definitely patient level and provider level factors that have been identified from mistrust to lack of information and other things that we need to work on from different angles within the healthcare setting on the provider side, but also engaging communities in their health more as well to increase trust.

Epilepsy can be viewed as a spectrum disorder with a broad range of impact on patients depending on severity, ability to gain seizure control for example. How did the studies and figures on quality of life elucidate how disease severity impacts quality of life?

Dr. Magdalena Szaflarski: I’ll let Jerzy answer it. He spent most of his life studying quality of life in epilepsy.

Dr. Jerzy Szaflarski: Thank you for putting me on the spot. Yeah. So, this is actually a very important question. However, we know that there are multiple aspects of epilepsy care that affect quality of life, whether this is seizure control or lack of control, whether this is medication side effects or not having side effects, whether this is some other factors like mood, for example, that definitely affects quality of life as well. There’s a lot of interplay between them. We know from epilepsy surgery studies that quality of life of patients who achieve seizure freedom after epilepsy surgery improves. No question about it. We also know that with improved seizure frequency, there is improvement in quality of life, and when patients go back to driving and when patients go back to full employment their quality of life improves.

So as we are treating our patients, we’re focusing not only on, “Here’s the pill,” or, “Here is the treatment that you should have,” but how we affect their quality of life, their mood, their ability to live independently, their ability to go back to a full employment or to be employed. Those are very important aspects of epilepsy care and questions that we are asked and answer every day.

Dr. Magdalena Szaflarski: Sometimes this balance has to be achieved between what kind of quality of life I can provide with this treatment or another treatment. So if there are severe side effects in the case of one treatment, then what do we recommend and also what patient prefers, right? So patient preferences are very important to consider in the treatment decisions about what they’re willing to maybe give up or accept in order to improve their quality of life. And just to keep in mind, we always just say quality of life in general, health-related quality of life, but it is a complex construct, right? We are looking at different dimensions of life, of functioning, of mental health, social health, and so on, and when we’re starting quality of life, we’re actually looking at these different dimensions and how treatment effects the different dimensions of quality of life.