The Role of Social Determinants of Health in Epilepsy-A Deeper Dive: Exploring the Factors Underlying Disparities

Video Transcription

So, now we're going to take a deeper dive, trying to understand a little bit, you know, what are the underlying factors that are driving these disparities? No disclosures.  So basically, we want to understand, you know, people don't have disparities because they have more melanocytes in their skin, right?  There are things that are—those are really just markers for other things that are causing problems. So, we need to look at those factors.  We need to collect data on those factors and analyze that data in order to be able to design interventions to try and correct these disparities.  So, I'm just briefly going to go over this study. This was an adult study from 2015 from New York that looked at—the focus was on levels  of depression and quality of life in Spanish-speaking immigrants with epilepsy as compared to English-speaking U.S.-born people with epilepsy.  And they just happened to notice incidentally that the Hispanic group was taking statistically significant fewer anti-seizure medications than the U.S.-born group.  So, this is not an AES-endorsed daily quiz, and you don't have to respond to this. I just want you to think about kind of what is your response to that study.  So, number one is, what? Where's the coffee? Number two is, meh, another disparity. Three is, jeez, that sucks.  That's not a bad response, but what I want to do is get you to the fourth response, which is why. Why does that disparity exist?  And then, the next question is, am I contributing to this? So, as I mentioned, you know, race—there's nothing intrinsic about skin color that's  causing these disparities, so if we don't look deeper, we're just stuck with the fact that the disparity exists without being able to do anything about it.  So, what are some potential drivers?  So, physician bias, and I'm starting with that because we don't talk about it as much, but this was a systematic review of implicit bias among health care professionals that  reviewed 15 different studies and found that 14 of the 15 demonstrated low to moderate levels of implicit bias against people of color among health care professionals.  So, and just to give an example of this, so this—I'm going to show you a few slides that are preliminary data from some work that I did in Austin before I transplanted to El Paso.  So these were patients that were referred to our pediatric epilepsy clinic, and I broke it down by what was the reason for referral.  And so the gray is they were referred for spells, the purple is they were referred for new-onset seizure, and red were referred for epilepsy.  So you can see among the white non-Hispanic group, it's pretty evenly spread in terms of the reason for referral.  But when we looked at the English-speaking Hispanic patients, many more of them were referred for spells as opposed to seizures.  And I thought this was very interesting, and hopefully your response to this is, why? Why would that be? So one possibility is that the referral source varied for the two groups.  And again, this is preliminary data. When you broke down who was referring the patients, it turned out that more white non-Hispanic  patients were being seen by neurologists in the hospital and then referred by these neurologists  to the epilepsy clinic versus the Hispanic English-speaking group where they were more  likely to be seen in the emergency department and then not seeing a neurologist in the hospital and then referred for spells. Now the next question is, why?  So there are so many places along each patient's timeline where physician bias can influence their outcome.  So just thinking about the disparities that we see in epilepsy surgery, like where are the points where physician bias could potentially influence and result or contribute to these  disparities in surgery? So one is just whether the pediatrician is slower or less likely to refer their patient  to see a neurologist, whether the neurologist is slower or less likely to refer this patient  to see an epileptologist, the epileptologist is less likely or slower to refer for surgical  evaluation, or once they're referred for surgical evaluation less likely to order ancillary  testing that might make them a better candidate for surgery or less likely to recommend surgery. So there's so many spots along that timeline where bias can come in.  And this study was brought up in the last SIG for those of you who are here. But this was an adult study looking at rates of outpatient neurology visits for five different  neurologic conditions including epilepsy. And they did a very nice statistical analysis of their data with multivariate logistic regression  controlling for age, sex, health insurance coverage, income, education, region of the country.  And they found that black and Hispanic participants were both less likely to have outpatient neurology visits.  And so again, this is taking out the SES, the socioeconomic status piece, and the insurance piece. And this effect persisted when they just examined the epilepsy subgroup.  So another potential driver is health literacy. So this is information from the National Bureau of Economic Research.  And in this graph, anything to the left of the line, hopefully to your left, yes, is basically below basic health literacy.  Anything to the right is basic to intermediate to proficient. And what you can see is just that among whites there's a relatively small percentage that  have below basic health literacy. And this percentage is increased among black and further increased among Hispanics.  And we found this in our research out of Austin again, and again, preliminary data. But we administered the epilepsy knowledge profile to the new patients that were showing  up at clinic. And what we found is that non-Hispanic white English-speaking patients scored the highest on this knowledge profile about epilepsy. And this was at their first visit.  So they came in knowing more about epilepsy. Hispanic English-speaking patients and families knew a little bit less.  And Hispanic families with limited English proficiency were the lowest scoring group. Now the interesting thing that we did is we compared this to our established limited English  proficiency patients. And what you can see is that between the new limited English proficiency patients, I'm just going to call it LEP.  So if I say LEP that's limited English proficiency. Between the new patients and the established patients there is an improvement in terms of their epilepsy knowledge.  But even the established LEP patients were scoring lower than the new white patients. So the question is, why do we care about health literacy?  So this is not an epilepsy-specific study, but it just looked at the impact of low health literacy on health outcomes.  And basically what you can see here, they looked at if a patient was seen in the ED, you know, what was the likelihood that they would end up bouncing back?  Or if they were admitted to the hospital, what was the likelihood that they were readmitted?  And what you can see is those with adequate health literacy were more likely not to bounce back, whereas people with inadequate health literacy were more likely to have one or more  revisit, either to the ED or the hospital. And this, just kind of getting back to epilepsy, pediatric epilepsy, this is data from the Pediatric Epilepsy Research Consortium.  They have a large epilepsy surgery database where they collect common data elements from 20, now 25, I think, U.S. pediatric epilepsy centers.  And they found that among the patients who they evaluated for surgery, so this doesn't look at, you know, who was actually referred to them, but among those they evaluated, race  and ethnicity weren't associated with the decision to offer epilepsy surgery, but non-whites were between three and four times as likely to decline epilepsy surgery.  So is that due to health literacy? Do they not understand what the risks and benefits are of surgery versus taking medications? I don't know. We got to ask that question, why?  Another possibility is that there's decreased trust in the physician or healthcare system.  So we know about historical racism, historical systemic racism in the past by the healthcare system and by the government.  Another contributor to the lower degrees of trust is the decreased likelihood of racially or culturally concordant physicians.  And also the ability of physicians to provide culturally humble education about the risks and benefits of surgery.  So this is also not an epilepsy study, but this just looked at the patient-centered communication that was perceived by people based on race.  And the blue bars are non-Hispanic white, the black bars are, excuse me, I said that when I practiced too.  The orange bars are non-Hispanic black, they're not black bars, they're black people. And then the gray bars are Hispanic and Latinos.  And what you can see is that the non-Hispanic whites were the most likely to rate their doctor as easy to understand, felt they listened to them carefully, felt they showed respect  and they spent enough time with them. And Hispanics were the least likely to feel that their doctor displayed these characteristics with blacks being intermediate.  And why, you know, what's a potential driver of this? So one is the fact that there are fewer people of color among physicians.  And one of the ways that this impacts, or just to demonstrate kind of the impact of this, is this study that looked at the likelihood of black men getting preventative screening  for things like blood pressure, diabetes, cholesterol, et cetera. And when the recommendation for screening came from a black doctor, which are the blue  bars, they were more likely to follow those recommendations than if they came from a doctor that wasn't black. So this matters to people.  And as was pointed out in the last SIG, there are lots of leaks in the pipeline getting people of color along to medical schools and to specialties.  So this shows the demographics on the left of the U.S. population in terms of race and ethnicity with whites being in the blue bar, blacks are African Americans in the orange  bar, and Hispanics in the gray bar. And what you can see is that whites are well represented across the pipeline.  But as you go to the right and move from the U.S. population to medical graduates, specialists, and neurology faculty, there are decreasing numbers of people of color.  Another one that we don't talk about all that often are immigration fears. I found this interesting study that looked at the likelihood of a patient of having a  usual source of care, and they looked state by state based on the number of criminalization policies that the state had. So these criminalization policies were like policing.  Are police allowed to verify immigrant status if they stop them for having a tail light that was out?  Or is an ID and a social security number required for getting a driver's license? And what they found was that states with a higher number of criminalization policies,  the noncitizens and the naturalized citizens had a lower likelihood of having a usual source of care. Limited English proficiency.  So 48% of U.S. immigrants have limited English proficiency, or LEP. This is 21 million, or 6.5% of the U.S. population, so a significant percentage of the population.  And since 1980, the percentage of immigrants with limited English proficiency is increasing. And for those pediatric epileptologists out there, 9 million children in the U.S. live  in immigrant families where at least one resident parent speaks English less than very well. So we see this.  These are both adult studies, but there was one that was a retrospective study of 223 adults with epilepsy and unilateral mesotemporal sclerosis, and they found that patients with  limited English proficiency experienced significantly longer wait times between pre-surgical evaluation in the EMU and surgery.  And this effect persisted even when they controlled for insurance status. And another study found that limited English proficiency but not Hispanic ethnicity was  also an independent risk factor for not undergoing resective surgery at all. And these are all patients with mesotemporal sclerosis. So there we go. Why is that?  So one of the most obvious things is that when you're using an interpreter, you basically cut in half the amount of time that you have for communication because everything needs  to be repeated. So maybe the patients had questions, reservations about the medication or the procedure, but they didn't have time to ask.  Or maybe they were prescribed medications or recommended surgery, but they didn't understand  because of the use of the interpreter what the true risks and benefits of following those recommendations were.  And the other thing is that, as we all know, using an interpreter impacts the provider-patient relationship. And I got this picture off the web from Language Line Services.  This just really demonstrates it. So in order for a patient to feel trust, like they were talking about in the last SIG, that  their provider cares about their outcome and has their best benefit in mind, you have to form that relationship, that trust.  And when you have an interpreter, it's a barrier to forming that relationship. And you can see here the doctor is doing what we're not supposed to do, which is looking  at the interpreter. And the patient is looking at the interpreter. And it looks like the interpreter and the patient have a great relationship.  But I'm not sure about the relationship with the physician there. Another one that Dr. Rao mentioned was socioeconomic status.  So you guys know this, but socioeconomic status is not comparable between different races and ethnicities. So in this graph, the darker bars are lower socioeconomic status.  And you can see that there's a much lower percentage of white people who have the lower socioeconomic kind of categories.  And that trend is the opposite in African-American and Latino people. So how does SES affect the likelihood of getting surgery or picking up medications, that sort of thing?  Well, what if they can't afford transportation? Like before I got to El Paso, there were no pediatric epileptologists there.  And so I discovered this because I was in Austin, and we were seeing patients from El Paso. And I was like, you know, my Texas geography isn't great, but El Paso is like way over  there. Right? It's an eight-and-a-half-hour drive. I was like, what are you guys doing in Austin? And they were like, well, there's no pediatric epilepsy in El Paso.  And I was like, you must be mistaken. El Paso is a big city, 850,000 people. How can there be no pediatric epileptologist? So I got on Google.  There's a single pediatric neurologist in this entire city and no pediatric epileptologist. And there's nothing for 250 square miles.  So the closest person was three-and-a-half hours away in Albuquerque. So not everybody can afford the gas money or has reliable transportation to be able  to travel for their specialty care. And also when you have your closest care being three-and-a-half hours away, not everybody can take off work.  I mean, that's a lost day's work, right? So not all jobs would permit people to just not show up.  And some families just aren't capable of missing a day's work because it means less money for things like food and rent.  And then we all know that the surgical evaluation process takes time and it takes money. It takes a commitment on the part of the family. They may need a hotel room.  They may need help with food. They may have other children that need childcare. And so having low socioeconomic resources can impact all of those things.  And finally, insurance status. So the likelihood of being covered by public insurance or being uninsured is much higher among blacks and Hispanics.  This was from the Pistana-Knight study. They showed that the rates of epilepsy surgery per 1,000 patients was significantly lower  in people with public insurance across all time points that were looked at. And so the question is, did this contribute to the racial disparity that they also found?  And unfortunately, they didn't consider it in the multivariate analysis. So we don't know the answer to that.  So in conclusion, if we don't ask why, then we're not going to have the data to answer these questions.  And if we don't analyze that data, a lot of times, so we're doing this big scoping review of disparities in pediatric epilepsy.  I can't tell you the high percentage of studies that collect some of these demographic variables, race, insurance, socioeconomic status, but they don't actually analyze it.  They just put it in a chart to show that their experimental group is comparable to their control group. And then when they look at outcomes, they don't factor these things in.  So if we don't analyze the data, we're still not going to understand what's driving the disparity.  And then finally, if we don't know what's driving the disparity, we can't design effective interventions. And I think that's why all of us are here.

Video Summary

The discussion centers on understanding the underlying factors contributing to healthcare disparities, particularly in epilepsy treatment among Hispanic Spanish-speaking immigrants compared to U.S.-born English speakers. It explores how implicit biases in healthcare professionals, socioeconomic status, language barriers, and health literacy impact patient outcomes. The transcript highlights various studies that demonstrate a lack of consistent access to neurology care for minority groups, noting systemic obstacles like language proficiency, trust issues between patients and doctors, and socioeconomic barriers such as transportation and insurance. There is an emphasis on the importance of addressing these factors through informed data analysis and developing interventions to correct disparities. The discussion concludes that without asking "why" disparities exist and properly analyzing the collected data, creating effective interventions becomes impossible, ultimately advocating for a more equitable healthcare system.

Asset Subtitle

Presenter:

Karen Skjei, MD, is the founder of the El Paso Center for Seizures and Epilepsy, where she serves as the only pediatric epileptologist within a 250 mile radius. She was inspired to pursue a career in medicine after witnessing the impact of a lack of access to medical care during her 2 years in the U.S. Peace Corps in the Dominican Republic. She attended medical school at UCSF, pediatric neurology residency at Mayo Clinic, Minnesota, and completed a 2-year fellowship in Clinical Neurophysiology/Epilepsy at CHOP. She is active in health disparities research and founded the Health Equity Committee of the Pediatric Epilepsy Research Consortium (PERC). Internationally she has given lectures in English and Spanish on pediatric epilepsy topics at regional education conferences organized by AES, AAN and the International Child Neurology Association in Ecuador, Paraguay, India and the Sudan. She has inspired many trainees to enter pediatric neurology and pediatric epilepsy and continues to mentor trainees from the undergraduate level through fellowship.

Keywords

healthcare disparities

epilepsy treatment

Hispanic immigrants

implicit biases

language barriers

socioeconomic status