The Role of Social Determinants of Health in Epilepsy-Bias in Epilepsy Surgery

Video Transcription

So the heading of my topic is Bias in Epilepsy Surgery. I do not have any disclosures to report.  And the learning objectives for this talk include recognizing bias in the patient selection for epilepsy surgery, as well as to advocate for surgical management in underrepresented  patient populations, as well as forms of epilepsy. So as we know, epilepsy can affect people of all ages, races, genders, socioeconomic classes all across the world.  And approximately one-third of people with epilepsy have intractable epilepsy, meaning they've failed at least two anti-seizure medications. Or they have failed them. I should say.  It's a good way of saying that. And among that one-third of drug-resistant patients, one-fifth of this population may be candidates for epilepsy surgery.  As we've learned earlier today, early referral for epilepsy surgery has been associated with improved seizure, as well as neurodevelopmental outcomes.  And we know those improved outcomes are related to multiple factors. Neuroplasticity, specifically in younger patients in pediatrics, suggests that if we perform  surgery at a younger age, they have a less risk of residual focal deficits after surgery. We know that they can have decreased need or duration of anti-seizure medications, which  again we learned today can have negative impacts. And of course, we can prevent kindling if epilepsy goes on longer and longer.  So all of those reasons make it vital that we are making appropriate and timely referrals for epilepsy surgery.  Unfortunately, less than 1% of all patients with drug-resistant epilepsy are referred for that purpose.  And the average time, as we heard earlier today, is about 20 years from the onset of their seizures.  And it's interesting that we've increased the number of epilepsy centers in the country and the world.  And we've actually had more indications and more types of surgery that we can offer, both from a palliative and curative standpoint.  But again, there's a huge lag between getting these patients to referral centers and actually completing the surgery. And this data was based on a 2016 study.  I just wanted to mention that it may not be the most up-to-date, but I think important to talk about.  So we're going to talk about who is underrepresented in epilepsy surgery evaluations, as well as completion. What are the barriers to receiving these referrals and surgery?  And why is there such a delay? And probably most importantly, what can we do, ultimately, to address some of these biases,  decrease these barriers, and eventually improve outcomes in potential surgical candidates?  So the U.S. Department of Health and Human Services has published these five social determinants  of health, which include access to education, access to quality health care, neighborhood environments, social and community contexts, and economic stability.  And all of these specific social determinants can be barriers to certain populations, specifically in our country, but I'm sure worldwide.  So as we know, presurgical evaluations may include multiple EEGs, overnight admissions, imaging testing, neuropsychological testing, which means multiple trips to the hospital,  multiple evaluation steps in the process. And after receiving surgery, there may be a recovery process.  So as you can imagine, patients with epilepsy and or caregivers of patients with epilepsy take time off to come to the hospital, come to clinics, which can result in either lost  wages because they're not at work, and some employers may not even understand that they have to take off for this process, and they can lose their job, which is ultimately a  huge financial strain. Again, patients themselves or caregivers of patients with epilepsy may have other dependents  that rely on them for support, whether it's financial or time-wise, and we have to keep that in mind, that when we're asking patients and families to come back for evaluations,  it's going to be hard on the rest of the family as well. Lack of transportation, the most obvious thing is if we don't have the finances to  get someone to clinic independently, then we can look at public transportation. But we all know that there are certain areas of the city, certain areas of the state or  the country where patients don't have access even to public transportation. So it's another barrier that we have to keep in mind.  And then lastly, the financial stress on families for all of the testing, for all of the transportation,  that can lead to psychological stress, which in turn can lead to a delay in their care because there's a lot of other factors going into their decisions. So it's a vicious cycle.  Specifically talking about racial and ethnic disparities, there have been studies, one of the ones that I'm quoting is from Bernio et al. in 2005.  And after correcting for education, socioeconomic status, and insurance status, they found that  African-Americans, Asian and Pacific Islanders, and people with limited English proficiency are less likely to undergo epilepsy surgery.  And this was actually specifically studied in pediatric patients with African-Americans and Hispanic children with epilepsy.  There were no studies available for Asian and Pacific Islanders and children with limited English proficiency.  But I just wanted to highlight that these are kind of the three big groups that they found there was a huge disparity.  And not only that, they were, like patients with limited English proficiency were not only getting surgery less, there was a delay in their surgical evaluation two times longer  compared to their English-speaking cohort. So looking at, this particular study was done at UCSF in their adult epilepsy monitoring unit.  They looked at over 200 adult patients, and they used Kaplan-Meier curves to discuss their survival was actually the median time to receiving a surgical intervention.  So I'm going to highlight all the lines, but the control is white. Patients with epilepsy, they received their epilepsy surgery at a median time of 270 days,  which compares to 286 days for Hispanic patients, 669 days for African-American patients, 853 days for Asian and Pacific Islander patients.  So another way of thinking about that is the median time to surgery for white adult epilepsy  patients was approximately nine months compared to two and a half years for Asian and Pacific Islander patients.  Similarly, the graph on the, your right, my right also, the median time for epilepsy surgery  in patients with, that were English proficient was 180 days compared to 431 days in patients with limited English proficiency. So why?  Why are there certain racial and ethnic groups that are underrepresented? From a patient standpoint, they did focus groups and found that there was a mistrust  of medical providers among African-American patients with epilepsy, which was similarly found in addition to healthcare-related discrimination in Hispanic patients with epilepsy.  In patients with limited English proficiency, they had perceived discrimination and poor quality of care that was thought to be related to communication barriers.  So taking all those factors into account, you can imagine that patients with that mistrust and with that perceived discrimination are less likely to take recommendations from their  healthcare providers, especially in kind of a bigger recommendation like surgery. From a healthcare provider standpoint, we've all learned about implicit biases, but just  as a reminder, there's thoughts and feelings that exist outside of our conscious awareness, so it's a lot harder for us to consciously acknowledge and therefore control.  And so they did find in some studies that there were implicit biases against African-American and Hispanic patients reported in healthcare providers, which can in turn lead to poor  communication and lower ratings of care, thereby contributing to the mistrust of providers that I mentioned in those two racial populations earlier.  Again, taking all those factors into account, patients are going to be less likely to trust what their healthcare provider is telling them to do.  And then other specific considerations is there's social stigmas in the Spanish-speaking Hispanic population regarding epilepsy as well as epilepsy treatments.  There are misperceptions about epilepsy treatment in Spanish-speaking Hispanic, Chinese, and Vietnamese patients.  There was one study that showed that Chinese and Vietnamese patients had inaccurate assumptions that only medications and drugs could treat epilepsy.  And then lastly, there's complementary and alternative therapies that are available but are also more prevalent in certain cultures, so Chinese herbs, acupuncture, they may be  more common in certain cultures despite the lack of evidence regarding their efficacy. And even if someone is ready to go forward with surgery, they may try these treatments  first, thereby delaying their intervention. So what can we do? One study that we looked at talked about an algorithm or machine learning that looked  in the medical records to identify objectively surgical candidates, which removes some of  the biases that we have as healthcare providers and maybe some of those barriers that we may have that I'll talk about in a second.  But what it doesn't do is really address the communication gaps as well as some of the cultural barriers that we discussed, and then even financial stresses, psychosocial stresses  based on the social determinants. It doesn't answer everything, but it takes, you know, it addresses some of the things that we can work on.  So switching gears a little bit more on the medical side of things, there are age disparities in epilepsy surgery.  I'm a pediatric neurologist, so I'm going to be a little bit more biased, but we do know based on a survey done of about 138 parents of children with epilepsy, and approximately  a quarter of them were actually opposed to surgical treatments for their child. But after receiving some more information about certain surgical epilepsy treatments,  that opposition decreased by half. So just highlighting the importance of education and awareness.  And then other reasons that younger age children may not undergo surgery or undergo evaluation for surgery.  There are subtle cortical malformations that may be missed or not visible on brain MRI because under the age of two or three, kids do not have complete myelination.  They also have a thinner skull and more fragile vasculature that may make certain surgical  interventions either more complicated or more risky based on complications like hemorrhage. And then lastly, we had kind of mentioned trying to assess a patient's deficits after  surgery, whether it's cognitive or motor and speech. Younger kids are not going to be able to always cooperate with some of our pre-surgical testing  like WADAs and functional MRIs, and that may make providers and families more hesitant to go forward with that.  So I talked about patient awareness, but in regards to provider awareness, I found this really fascinating that only 14% of referring neurologists knew surgery should be considered  after the failure of two anti-seizure medications, and 19% of referring neurologists thought  that drug-resistant epilepsy was defined as a patient failing all anti-seizure medications that are available on the market. So how can we do better?  I think being here is really important. Not only attending CME lectures and AES conferences, this is all great, but increasing the curriculum  and exposure that neurology and neurosurgery trainees have in their postgraduate programs is, I think, is going to be key. And then communication.  So referring providers to epilepsy centers or surgical epilepsy centers are always constantly looking for feedback.  So the more communication we can have with them face-to-face or even on the phone, email, I think that's really, really important and can make a huge difference.  And even in our medical records, having a system where notes can flow directly back to the referring provider seems really simple, but I think can lead to more referrals and  more timely referrals. Epilepsy syndromes. So patients with epileptic encephalopathy, such as Lennox-Gusteau, are often underrepresented in epilepsy surgery.  So there was a study done in Sweden that showed that 55% of Swedish neurologists did not consider patients with intellectual disability for epilepsy surgery.  There are provider misconceptions about the lack of surgical options in generalized and or multifocal epilepsy.  And then I think the colleagues prior to me did an amazing job of highlighting that we do focus on seizure outcomes, but the quality of life and psychosocial outcomes are extremely,  extremely important. And for the record, I was a B from the beginning, so I really do want to highlight that even  more so, because in pediatrics specifically, caregivers perceive that level of interaction,  independence development, as well as their own stress level as being of very high importance when they're undergoing epilepsy surgery or thinking about undergoing epilepsy surgery.  Psychiatric comorbidities are fairly common in our patients with epilepsy, and the prevalence is quoted anywhere between 25% to 50%. So it affects a lot of our patients.  But interestingly, there was a study done in 2021 with over 1,400 patients, and they identified 139 patients eligible for epilepsy surgery, but were not referred, and the majority  of them cited, quote, psychological condition as a reason for not referring. There's another study done in 2005 with fewer patients, about 360 patients, that was also,  I think, highlighted earlier today that adults who underwent epilepsy surgery showed a significant  and sustained improvement in anxiety and depression scores, and they did three to 24-month follow-ups. So I think that was pretty impressive and important to highlight.  A specific psychiatric condition that we see fairly often is psychogenic non-epileptic events. This was a smaller study, only 13 patients of adult patients with PNEE, and they found  that of the 13, 11 of those became seizure-free, and then seven of them had resolution of both their seizures and their non-epileptic events.  Something to consider, and at least should not be a contraindication. Hot topic over the last couple years is genetic epilepsy.  We've identified so many genes over the last 20 years that have been implicated in the pathogenesis of epilepsy.  We do know that some of these mutations, like channelopathies and mutations affecting synaptic transition, have had poor outcomes in terms of seizure freedom after resection,  but we know there's a lot of palliative options like corpus callosotomy that can be considered or VNS devices in patients like this.  And then a specific, I know there's a lot of great talks on mTOR pathway mutations and how they have higher association with focal cortical dysplasias, which we know have higher  rates of seizure-free outcomes after resection. So we never want to discount anyone because they have a genetic mutation.  We have learned a lot, and I think we have a lot more to learn, so we'll just keep, always keep these patients in mind.  We know that lesional epilepsy is more responsive in terms of seizure-free outcomes after we do resective surgery, but are we missing some non-lesional cases that are actually  lesional? I mentioned that incomplete myelination at younger ages can kind of obscure some of the margins and we may miss some cortical lesions earlier on in kids' lives.  But there's also technical issues. We really, most epilepsy centers have at least a 3T or in some cases 7T MRIs that can help  identify lesions a little bit with a little more sensitivity. And some centers may even have specific imaging, like how they slice things and how they're  going to process the MRI slices. So that also can further elucidate a lesion in patients with focal epilepsy.  Experience and access to both adult and pediatric neuroradiologists I think is very important,  and I will add to that the epileptologists and neurosurgeons can help aid some identification of subtle lesions.  And then lastly, being in a bigger kind of level four epilepsy center, you may have access  to other imaging studies or imaging protocols or post-processing techniques that not necessarily  make somebody lesional, but may be able to identify an epileptogenic zone that was not so obvious on first pass screening.  Okay, so let's say we do have someone with focal epilepsy, but their interictal EEG shows either generalized or bilateral discharges.  Some providers may be hesitant to move forward because they don't know if a patient is then going to become seizure-free.  So this is a pediatric study that I looked at with 50 children. Half of them had congenital malformations, and half of them had some sort of perinatal  injury, like a stroke that led to encephalomalacia. And of those, 30% to 100% had discharges that were either bilateral or generalized, but  they still underwent resective surgery, which included hemispherectomy, lobectomy, multilobular resections, lesionectomies.  And they found that over 85% were either seizure-free or had significant seizure reduction.  Similarly, patients with tuberous sclerosis, as we know, also have fairly favorable seizure-free  outcomes after tuberectomies or lobar resections, despite having multiple cortical tubers. And that's because we know that not all cortical tubers are highly epileptogenic.  And again, we don't want to discount them or not refer them for epilepsy surgery, despite having multiple lesions. So impact on clinical care.  We know there's several demographic and medical factors that contribute to disparities in epilepsy surgery evaluations, as well as intervention.  Provider awareness and education about our implicit biases is one important step towards addressing these disparities.  I know there's multiple more, but anything that we can do as health care providers I think is really important.  So we have to find systematic approaches to identifying candidates for epilepsy surgery. Some of the machine learning and algorithm-based technology I think is great.  But from a human standpoint, I think creating a multidisciplinary team that is diverse, and when I say diverse, I mean diverse in all meanings of the word, I think is going  to best serve all of our patients, both pediatric and adult, and help improve seizure outcomes as well as non-seizure-related outcomes that we want to look at.

Video Summary

The talk addresses biases in epilepsy surgery related to patient selection and outcomes, emphasizing the need to advocate for underrepresented populations. Despite epilepsy's widespread impact, only about one-third of patients have drug-resistant cases, with a fraction eligible for surgery. However, less than 1% of these patients undergo surgery due to significant delays and barriers. The discussion highlights racial and ethnic disparities, with African American, Asian, and Pacific Islander patients experiencing notably delayed surgical interventions due to implicit biases, mistrust in healthcare, communication barriers, and alternative cultural treatments. Age disparities and misconceptions about surgical eligibility for certain epilepsy types further hinder timely interventions. Proposed solutions include leveraging technology for unbiased candidate identification, improving provider and patient education, enhancing referral processes, and fostering diverse multidisciplinary teams to better address the sociocultural and medical challenges, ultimately improving surgical outcomes and overall quality of life for epilepsy patients.

Asset Subtitle

Presenter:

Shilpa Reddy, MD, MMHC, is an Assistant Professor in the Division of Pediatric Neurology, Section Head of Pediatric Epilepsy, and Director of the Pediatric Epilepsy Monitoring Unit at Monroe Carell Jr. Children’s Hospital at Vanderbilt University Medical Center in Nashville, TN. In addition, she is the Program Director of the Epilepsy fellowship and Associate Program Director of the Clinical Neurophysiology fellowship. She went to medical school at the University of Iowa Carver College of Medicine, then moved to Nashville in 2010, where she completed her Pediatrics residency, Pediatric Neurology residency, and Clinical Neurophysiology fellowship at Vanderbilt University Medical Center. She joined faculty at Vanderbilt as a board-certified pediatric epileptologist in 2016. To achieve her goal of improving health care delivery, specifically in the realm of clinical epilepsy, Dr. Reddy recently earned a Master of Management of Health Care degree through Vanderbilt University’s Owen Graduate School of Management.

Keywords

epilepsy surgery

racial disparities

implicit biases

patient advocacy

technology solutions