The Role of Social Determinants of Health in Epilepsy-Health Disparities in Epilepsy: A Brief Overview

Video Transcription

My name is Dr. Kavya Rao, and I've always wanted to start a talk this way, but I'm queer, brown, female,  and if anyone needs to have this said, that, you know, you have someone that looks like you up here, awesome. If any of you want any mentorship or an ear, come find me after.  So my section of the talk is going to be health disparities and epilepsy. I say it's a brief overview. It's 50 slides, basically, forgive me.  But, and we actually had to do a lot of condensing last night, so this is the best we've got.  I have no disclosures.  So the learning objectives define the term social determinants of health,  identify the social determinants of health that are associated with worse outcomes, specifically in pediatric epilepsy in the U.S., and  know which outcome measures in PEDS epilepsy are affected by social determinants of health.  So what are they? So this is a big, busy slide, but focus your attention on the right, where it says impact on health, equity, and well-being.  Basically, there are a lot of different things that can impact whether someone gets what we consider good care.  There's, are the roads they live on paved? Do they live near grocery stores?  Are they having to choose between food and zanisamide, like one patient that lives in the back of my heart?  And all of those can impact whether they get the kind of epilepsy care we think that we're giving. And so, simplified,  health outcomes are in the middle, and systemic factors, the community you live in,  culture, I think it should be required reading by now, but when the spirit catches you and you fall down, where the Hmong Vietnamese community thought that someone with epilepsy was  having visions and that sort of thing, and socioeconomic status, insurance status, money, they all impact outcomes. So let's go ahead and make you guys mad one step at a time.  We're gonna do race and ethnicity, gender and gender identity, and socioeconomic status, understanding that there are a lot more,  you know, ways that we have data and can parse out data, and I'll summarize those other ways at the end.  So, race and ethnicity,  basically, these are the things we know. So, non-Hispanic black children have an increased prevalence of epilepsy.  Black persons and Hispanic persons have a decreased access to video EEG monitoring than white persons.  There is a statistically significant increase in hospital admissions for medically intractable epilepsy in black and Hispanic children over the last 15 years.  Black and Hispanic children are less likely to receive intracranial monitoring than white children, so that's a disparity in management.  Rates of epilepsy surgery for black children is consistently half that of white children over the last almost 15 years, which is again a disparity in management.  Rates of 30-day epilepsy surgery complications are higher in black children and Hispanic children than white children, which is a disparity in outcome.  And then the rates of hospital admission for epilepsy are higher in black children than white children, and this is also a disparity in outcome.  And all of this is PEDS, specific to PEDS epilepsy within the U.S.  So, the first study that I'd like to highlight is out of Medical University of South Carolina. It's by Lacobo, and it's in 2018.  This is actually the only pediatric study we found in our entire meta-analysis describing increased prevalence of epilepsy among  non-Hispanic black children. And just a quick word about language. So, if a study is published, you might see terms on the slides like Caucasian, where I would say white.  You might see African-American, where I would see black, just because certain terms are more correct.  But I'm leaving the graphics unedited because there are studies that are published.  So, in this table, this study basically extracted data on kids less than or equal to 17 years old from the Medical Expenditure Panel Survey from 2003 to 2014 out of the CDC.  It compared pediatric inpatient admission, outpatient visits, prescription medicine use, ER visits associated with the  ICD Code 83, which is for epilepsy, and found that non-Hispanic black patients had a statistically significant increased risk of epilepsy, and the P values are highlighted.  The Schilt Study from 2013. This one is a large retrospective study from California State Inpatient Sample and the Emergency Department Database.  This one looked at kids and adults with frequent seizure-related hospital admissions or ER visits between 2005 and 2009,  and the outcome they tracked was receipt of video EEG monitoring, and this was their proxy for access to epilepsy specialty care,  just because we tend to be the ones ordering the EEGs.  The patients were, again, identified by ICD-9 Code 89.19, and video EEG monitoring was least common among black people,  males, and those with multiple comorbid conditions.  The reason that I add that last bit is that one of these things is not like the others.  It makes a lot of sense that people with multiple comorbidities may require more monitoring,  but it doesn't make sense that there would be a disparity with race and gender with that, and I'll continue to do that throughout the talk.  So this study is awesome. This study is my hero study.  But Wong et al. in 2018 used the Healthcare Cost and Utilization Project Kids Inpatient Database, or KIDS,  and it's the largest publicly available all-payer pediatric inpatient database in the U.S.  So they used ICD-9 codes corresponding to medically intractable epilepsy and intracranial monitoring from 2000 to 2012,  in kids less than and equal to 18 years old.  So univariate analysis showed that Hispanic and black patients were less likely than white patients to undergo intracranial monitoring.  This was found to be statistically significant.  The disparity for black patients actually persisted in the multivariate analysis,  and this finding was actually recently confirmed also in a retrospective study that investigated trends from 2010 to 2015 using the National Inpatient Sampling Database.  This is my other hero study. They're all my heroes.  So this is from Pistana Knight in 2015.  This is a serial cross-sectional study of pediatric epilepsy surgery using, again,  the Kids Inpatient Database from 1997 to 2009.  So the rates of epilepsy surgeries in this time period for black children is persistently half that of white children,  which is highlighted in the red box.  Sanchez-Fernandez study.  This also used the Kids Inpatient Database from 2010 to 2012,  and this one found that black and Hispanic children were less likely to receive epilepsy surgery than white children.  So in this chart, that's a little small, but all the way on the left is white,  and then next is black, next is Hispanic, next is other.  The blue is the total population. The red is focal refractory epilepsy, and the green is resective surgery.  So in case you're wondering why the green bar in white is higher than the red,  there are some people getting resections who don't have epilepsy, so brain tumor patients, which makes logical sense.  But what I would draw your attention to is the black and Hispanic groups,  where the green bar is lower than the red bar.  And the other thing I wanted to say here was that black children were 16% of the sample, but only 7% of the surgeries.  And those differences persisted after adjustment for sociodemographic factors.  Vedantham study showed 30-day outcomes in pediatric epilepsy surgery.  This one assessed adverse events in kids less than or equal to 18 years old,  280 kids who underwent epilepsy surgery in 2015.  It analyzed surgical complications, so unplanned reoperations and readmissions,  within 30 days of the index procedure. Then they used multivariate logistic regression to identify risk factors for adverse events.  In terms of the U.S. census data as a basis for comparison,  non-Hispanic black people make up almost 14% of the population under 18 years old in 2014,  but they only comprised 10% of the total surgery population in the study.  Similarly, Hispanic patients were almost 25% of the under-18 population in 2014,  but they comprised only 7.5% of the total surgery population in the study. Univariate analysis, significant associations with 30-day complications  were found in things that don't make sense, like black and Hispanic,  and things that could make sense, like hemispherectomy, longer OR time, and comorbidities.  So I wanted to highlight that difference once more.  Here are the p-values.  And these differences for black people persisted in the multivariate analysis.  Okubo's study, retrospective study looking at discharge rates for black people, and the retrospective study looking at discharges from non-federal U.S. hospitals from 2010 to 2015,  there were almost 700,000 hospitalizations 18 years old and under for epilepsy or epilepsy surgery.  And this is, again, from the National Inpatient Sampling Database.  This one demonstrates that Hispanic and black patients  show consistently higher hospital admission rates for epilepsy  as compared to white people over all the time periods shown.  So let's talk about gender.  So large demographic studies have shown similar overall prevalence rates  for pediatric epilepsy among males and females.  In hemispherectomy patients, the study I want to highlight  shows that females have lower health-related quality of life than males.  And from 2000 to 2012, males were overrepresented in pediatric epilepsy surgery.  Unfortunately, right now, there are no current studies examining prevalence of epilepsy based on gender identity.  And as an aside, I don't think this is for lack of data. There is a PRIDE study, and people can self-enroll  so that their data is kept in the same location without outing anybody  and without causing any patient's danger.  So that is a huge database that has not yet been tapped for this particular question.  Transgender individuals, in particular, self-report barriers to care,  including financial barriers and lack of healthcare-provided cultural humility.  So the Griffith study from 2007 out of epilepsy, this is the hemispherectomy study. Evaluated health-related quality of life in a sample of ped's hemispherectomy cases  using validated questionnaires for quality of life.  Again, female gender, why?  But higher AED load and lower functional independence,  it makes sense that you might have worse health-related quality of life,  but certainly not for female gender.  Again, to the Sanchez-Fernandez study.  Again, using the Kids in Patient database,  showed that males were overrepresented in epilepsy surgery. And again, the male and female categories are now there,  and the bars' colors are the same as before.  And the SAFER study is in here to demonstrate  that barriers self-reported by transgender individuals  include financial barriers, discrimination, health systems barriers,  transportation, housing, mental health.  I really like the last sentence they put.  While some of these healthcare barriers are faced by other minority groups,  many are unique and many are significantly magnified for transgender persons.  So the final category we'll talk about today,  although there are more categories, as we all know,  is socioeconomic status.  So here's what we know.  Pediatric patients in poor and publicly insured categories  have an increased prevalence of epilepsy.  Pediatric patients who are publicly insured  have less chance of having an intranasal midazolam prescription  when compared to their privately insured counterparts,  which is a disparity in management.  Publicly insured pediatric patients have lower rates of intracranial monitoring and epilepsy surgery,  and they also have longer wait times to invasive monitoring  and longer wait times to surgery than their counterparts,  which is a disparity in outcome.  Back to the LoCobo study.  This one found basically pediatric patients in poor income,  which is the top box,  and publicly insured categories  had statistically significant increased risk of epilepsy.  The Nunley study is the one looking at intranasal midazolam  versus rectal diazepam and healthcare utilization  between the two methods.  Looked at almost 5,500 pediatric epilepsy patients,  and in intranasal midazolam users,  when compared to rectal diazepam users,  had 1.5 fewer ER visits, fewer ambulance visits,  fewer urgent care visits.  So better drug by those metrics,  but patients with commercial insurance  were more likely than their counterparts  to have such a prescription,  and the rest had nothing or rectal diazepam. So these results justify the cost-effective benefits  of prescribing intranasal midazolam  compared to rectal diazepam  because healthcare utilization decreased.  So why aren't we doing it?  Back to the Wong study.  So in the right-hand side on the red box,  patients on Medicaid underwent intracranial monitoring  at lower rates than private insurance holders,  so the blue bars are private insurance  and the orange bars are Medicaid, Medicare,  and this was statistically significant.  And then back to the Pistano study.  So children with Medicaid had much lower rates of surgery  compared to those with private insurance,  and those with private insurance  received epilepsy surgery consistently  almost three times as often.  And then the Baca study is the one that looks at time.  So this one is a single-center retrospective study  out of UCLA,  and the records of 430 children  less than and equal to 18 years old who underwent surgery for epilepsy  from 1986 to 2010,  which is a huge time range,  and showed that private insurance  as compared to Medicaid,  there was a shorter time to referral  and a shorter time to surgery.  So I wanted to summarize what we know  in terms of all the research that I couldn't talk about.  And so all of the Xs in this table  are all of the things that we know,  and clearly there's a lot of blank spots,  but in terms of race and ethnicity,  we know that it affects almost every category here  and probably the cultural humility category  if there was a study on it.  Gender and gender identity,  I put an asterisk on the X  in the cultural humility box  because there are no studies yet on gender identity,  and so that indicates that we don't know  what we don't know, and this is a problem.  And then in terms of English proficiency  and nativity, those are blank  just because the studies that we encountered  don't do a stellar job  of comparing apples to apples  in terms of they'll sometimes compare  someone who has limited English proficiency  and low socioeconomic status  and citizenship differences  to someone who doesn't have any of those things.  I know those qualities,  you cannot always separate them  from people in real life,  but we haven't yet seen studies  that pits them head-to-head  in the ways that I described.  And then education and geography are shown here.  These are our references.

Video Summary

Dr. Kavya Rao's talk explores health disparities in pediatric epilepsy, emphasizing that social determinants like race, ethnicity, gender, and socioeconomic status significantly impact the quality of care and outcomes. Dr. Rao highlights that non-Hispanic black and Hispanic children face barriers in accessing specialized epilepsy treatments and surgeries, leading to poorer outcomes. Gender disparities also exist, with males being overrepresented in surgery cases. Those insured publicly have extended wait times and less access to effective medications. The presentation underscores the need for improved access and equity in epilepsy care across different communities.

Asset Subtitle

Presenter:

Kavya Rao, MD, (she/her), earned both her Bachelor of Science degree in general biology and her Doctor of Medicine degree at the University of California, San Diego. She completed a child neurology residency at the University of Texas Health Science Center in Houston and a pediatric epilepsy fellowship at Stanford University. Dr. Rao is fluent in English and Spanish. Dr. Rao chose to become a pediatrician to be a listener and role model to young people. Her goal is that her patients feel accepted and celebrated as they are, and she strongly believes that young people can and should play a developmentally appropriate role in their care plans. She also enjoys mentorship of students and residents in the LGBTQ community.

Keywords

pediatric epilepsy

health disparities

social determinants

access to care

equity in healthcare