Melanie Cole (Host): . Welcome to UAB Med Cast. I'm Melanie Cole, and I invite you to listen as we examine inequalities and disparities in pediatric epilepsy. Joining me is Dr. Kathryn Lalor. She's an Assistant Professor and a Pediatric Epileptologist at UAB Medicine. Dr. Lalor, it's a pleasure to have you with us.

And data has shown that people from racial or ethnic minority groups are less likely to receive preventative health care and across the board, various ethnic groups have faced a disproportionate health burden. Can you tell us a little bit about some of the factors contributing to the health care disparities in children with epilepsy? Are there studies that show whether race and ethnicity were associated with seizure remission in this population?

Kathryn Lalor, M.D. (Guest): Of course. And thank you for having me and having me to talk about this important topic. Yes, we know that, there are about 54,000 people living with epilepsy in our state in Alabama and children and the elderly are most affected and the most vulnerable populations. Much of the data we have about health disparities in epilepsy is focused on adults, the adult population.

We know that adults with epilepsy have decreased levels of education. They have decreased incomes, they have decreased health status. And I think that our role as pediatric neurologists and epileptologists is to really take this data and see how we can set these children up for success as best that we can. We know that the morbidity of disease and the effects of discrimination across socioeconomic and racial and ethnic outlines can accumulate a real lifetime and lead to some of these worse outcomes.

Host: That certainly is true. And this is such a good topic we're discussing here today, Dr. Lalor. Are there any factors unique to your region and are there any factors which could improve the care of say students with epilepsy and seizure disorders in the schools? As a pediatric epileptologist what do you see in your general region about factors that could contribute or could help the situation?

Dr. Lalor: The south itself, is becoming known as the epilepsy belt. And some of this is due to sort of adult factors that can lead to epilepsy later on in life. However, I think some of the disparities in care for people with epilepsy are present across the age range. And we don't understand all of the factors for this. And it's very important that we keep doing research and looking for these factors, but we know that people in the south are less likely to see a neurologist if they have epilepsy, much less an epileptologist or epilepsy specialist.

And specifically, we know that African Americans are less likely to receive advanced treatments for epilepsy, such as epilepsy surgery. We also know that they face more stigma from their epilepsy, which is still a very big problem, across the epilepsy population. And we don't understand all of the factors for this yet. So, more research is definitely needed. Another factor in Alabama is that we have a large rural population and the neurologists and epileptologists are really sort of located in very focal areas. So, access to care can be a big issue. And then in schools, a lot of our schools don't have the funding for full time nurses to be present in each and every school in the district. And this can lead to safety issues for students with epilepsy and also can limit what they have access to within the school. And because many students for their safety, are prevented from being able to attend sports practices, field trips, or even sometimes attend school itself if a nurse is not able to be present.

Host: This is really such a complex topic Dr. Lalor. So, what are some things that you feel, in your opinion, that can be done on a system level to try to rectify some of these disparities? You can speak about maybe Telehealth, as you were talking about reaching out to the rural areas. Please share for us your experiences of prioritizing diversity, equity and inclusion. And express why it's important for an academic medical center, such as UAB and neuro department to do this for the community.

Dr. Lalor: So, speaking of Telehealth and Telemedicine, the pandemic has been such a hard time for so many people across the board, but when, the silver lining that has come from it is that Telemedicine has ramped up a lot. And the access to Telehealth visits, has really increased for a lot of our patients. And, I think the difficulties with living in a rural area and having low socioeconomic status, can limit families from being able to get to appointments. And so Telemedicine has really improved care for these families. And I think that on a systems level, we really, as physicians need to be advocating for these patients.

And then as you know, policy makers, insurance providers need to understand that in order to provide care for many of these patients, we need to continue to have access to Telemedicine and this needs to really be incorporated into the standard of care even moving forward after pandemic concerns are no longer present.

Some other things I think, research focused on factors of disparities, especially in children, but also looking at caregivers of children with epilepsy, especially those that have a lot of co-morbidities such as intellectual disability and require really a lot of individual care and one-on-one care. We know that in those families of children with epilepsy like that, there is decreased quality of life of the whole family. And so looking at factors that contribute to that and how we can improve them, I think that's very important. And then, increasing education about epilepsy, across the community to try to decrease stigma and improve awareness and safety for these patients, both in schools and also just in public. We are very fortunate in Alabama to have a strong chapter of the Epilepsy Foundation. And they do a lot of work in this area, but we, as physicians can do more.

And then I think for ourselves, one thing that individual providers can do is really do a lot of self-reflection on our own implicit biases and assumptions that we may make without even realizing it. Because these may end up being factors in access that certain patient populations have to certain treatments like the advanced care, like epilepsy surgery as I was discussing earlier. And I think we really need to educate ourselves on how to be culturally competent and also be aware of our own biases which, which everyone has just based on their background. And then really listen to our patients and understand that many of them may be uncomfortable with the healthcare industry, and not really understand how to navigate it. So, we need to be the ones asking the questions and ensuring that families have the support they need to care for their children with epilepsy.

Host: Very well said. I agree with you completely. And I was going to ask you about in your personal experience, how you've seen this materialize at UAB and that working with people from different backgrounds or cultures can present a unique opportunity and unique challenges for collaboration and creativity. As we wrap up, Dr. Lalor, please tell other providers what you would like them to know about epilepsy at UAB Medicine, when you feel it's important that they refer and where you think the best opportunities to examine inequalities and disparities in pediatric epilepsy lie for the future.

Dr. Lalor: I have seen, on a patient specific level, sort of some of these implicit biases play out in discomfort with the hospital and sort of low health literacy, really lead to communication issues between providers and parents. And I think there's the potential there for us to sort of not rectify those and give poor care for our patients. So, I think that's really on us to meet patients and parents where they are. And really try to understand their background and where they're coming from, so that we can help them make the best decision for their children. As far as, our Epilepsy Center here, it's recommended that any patient with epilepsy who is still having seizures after trying anti-seizure medications be referred to an Epilepsy Center for evaluation of other non-medication treatments that they may qualify for. We also have, many general neurology providers who are very experienced at treating epilepsy and we're of course always happy to see anyone who either has seizures or there is just concern that they may have seizures.

And then I think, areas of focus for us, in addition to educating ourselves, sort of the low hanging fruit is really advocacy, advocating for our patients and also in the community and at a state level, pushing for more policies and legislation that help our patients, for things like improve safety in schools, improves nursing here in schools, access to Telemedicine even after pandemic alterations are removed from healthcare. And then I think that research really needs to focus on factors that lead to both disparities in healthcare for adults and children, but also how your experience with the health care industry as a child then leads to some of these disparities we see in adults with epilepsy. And so that we can really take the best care of these patients that we can, and also set them up for success in their adult lives.

I will add that we now have an Epilepsy Transition Clinic to try to help these families and patients move from pediatric to adult neurology care. And then there's also the Step Clinic here for patients with complex medical needs and help them move from the pediatric primary care, but also specialty care world to the adult healthcare system.

Host: That transition to adult medical care for patients like this is challenging, but that was really great information. And I thank you so much, Doctor for joining us today.

And a physician can refer a patient to UAB medicine by calling the mist line at 1-800-UAB-MIST, or you can always visit our website at UAmedicine.org/physician. That concludes this episode of UAB Med Cast. Please remember to subscribe, rate and review this podcast and all the other UAB Medicine podcasts. I'm Melanie Cole.