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.
Hear from a mother about how her personal experience with healthcare disparities has impacted her daughter with special needs, and their experience with healthcare, in this episode of Seizing Life: Seeing the Whole Person: Disability, Race, and Healthcare featuring Sherri Brady.
Q&A Transcript
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 cdc.org 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.
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 healthcare professionals who are familiar with individual medical conditions and needs. CURE Epilepsy 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 healthcare professionals who are familiar with the individual’s specific health situation.