The Role of Social Determinants of Health in Epilepsy-Defining Social Determinants of Care in Vulnerable Individuals with Epilepsy

Video Transcription

So I'm Dr. Lisa Clifford, I'm a Pediatric Psychologist at Cincinnati Children's Hospital. And today I'm going to be talking on social determinants of health and epilepsy population.  I don't have any disclosures. So overall kind of learning objectives for today are identifying, defining social determinants  of care in epilepsy population and then also applying that insight into how do we improve care among our epilepsy population.  So I'll start off with reviewing social determinants of health conceptual framework, looking at  health inequities in epilepsy, looking at social determinants that drive those inequities in epilepsy, and then considerations of how do we close that treatment gap.  So historically, individuals from disadvantaged backgrounds have experienced higher rates of mortality and morbidity. And social determinants of health  are the social, economic, political, and environmental factors that drive the disparities in health through the inequitable distribution  of materials and resources that limit the opportunities for and the access to health-promoting resources. So therefore, the choices that people make  are constrained by the choices that they have.  The World Health Organization's Commission on Social Determinants of Health developed a conceptual framework to show how social, economic, and political mechanisms  create and maintain stratification of populations into socioeconomic positions based on social and demographic factors. And the model provides a framework  for understanding how structural determinants, that is, the social, political context and the socioeconomic positioning, are linked to specific outcomes.  The model highlights how the inequities, the inequitable distribution of resources, shape the conditions in which people live, so their environments.  The quality of their neighborhoods, employment, academic opportunities, access to, and the means for acquiring health-promoting resources. Exposures and opportunities to deal  with psychosocial stressors, as well as the availability of social supports. It also has an influence on health behaviors due to access and also as a means of coping with stress.  And it also looks at the differential vulnerabilities to risk factors based on biological factors, such as genetics, age, and sex.  As part of the model, we also look at the health system and how it has an impact on access to care, as well as difference in exposures to  and vulnerabilities to health-compromising conditions.  So, we'll start off with looking at socioeconomic position and some of the health disparities  specific to each one of those different areas, and then look at the intermediary determinants  of health, so the material conditions, behavioral, biological factors, and so on, and then circle  back around to looking at the structural and social determinants of health inequities.  So, over the past several years, there has been a significant increase in epilepsy prevalence and mortality rates.  Recent estimates indicate that a 98 percent increase in mortality over the past two decades with the greatest increase observed between 2010 and 2017.  This is also a time period that coincides with a 30 percent increase in epilepsy prevalence rates.  While the increase in rates coincides with overall growth in population, research indicates that the risk for epilepsy and epilepsy mortality are greater in particular populations.  So, people with epilepsy are three times higher risk for premature death compared to the general population. So, overall, they're already an at-risk population.  Risk for epilepsy is higher among individuals from economically disadvantaged backgrounds, so those with lower household incomes, lower education, and unemployed individuals.  Then we also see disparities with respect to race and ethnicity, so African American, Hispanic immigrants also have higher rates of epilepsy.  And then there's, with respect to age, the greatest prevalence in our youngest and our oldest populations.  Risk for epilepsy-related mortality is also greater for non-Hispanic black people with  epilepsy compared to non-Hispanic white people with epilepsy and Hispanic people with epilepsy. Men are at higher risk for mortality versus women.  And then, again, with respect to age, we have higher risk of mortality among our aging population.  Comorbidities contribute to disease burden, healthcare needs, treatment response, and lower quality of life among people with epilepsy.  Among 50% of adults with epilepsy and up to 70% of youth with epilepsy have one or more comorbid conditions.  Among adults with epilepsy, comorbid conditions such as cancer, some vascular diseases, other neurological and neurocognitive disorders are outpacing disease-specific factors as  a leading cause of premature death. And across both children and adults with epilepsy, anxiety and depression are among the most  common comorbidities affecting about one-third of people with epilepsy. Compared to healthy controls, the risk for suicidality is four times higher in people  with epilepsy and even higher when there is a psychiatric comorbidity present. And while that's the overall, what it looks like among people with epilepsy, we also see  the disparities based on race, ethnicity, age, and sex and gender. So with respect to race and ethnicity, American Indian and Alaskan Natives are significantly  higher risk for anxiety and depression compared to all other ethnic groups. Immigrants are higher rates of depression compared to individuals with epilepsy born in the U.S.  And then black people have higher rates of hypertension, which is a leading cause of death among people with epilepsy compared to all of their race, ethnic groups.  With respect to age, higher rates of suicidality and repeated suicide attempts among our younger populations.  And then with respect to sex and gender, women have higher rates of suicidality, higher rates of epilepsy-related problems, such as seizure reoccurrence, childbearing issues.  And men have higher suicide attempts. And overall, one of the populations that there aren't, there isn't enough research  on, there's definitely an area of opportunity, is among our LGBTQIA plus population. And they represent a particularly vulnerable population just in general.  So for instance, within the general population, this group, healthcare discrimination is associated with higher rates of suicide ideation and suicide attempts.  They also experience, they also may experience interactions between epilepsy medications and hormones that are used for gender affirming care.  So this is definitely a population that might be particularly vulnerable that we just don't know enough about.  So next I'll move on to the, considering the intermediary determinants of healthcare material conditions specifically.  These are considered, when you're thinking about it from the model perspective, are kind of mediators and those causal mechanisms that link the socioeconomic positioning to the  specific outcomes.  So starting off with kind of just looking, what does this look like in the general population?  So education has been identified as a particularly impactful social determinant of health within the general population.  So less than a high school education is associated with lower employment opportunities, earning potential and worse working living conditions. So overall kind of a downward spiral.  Within the general population, risk for lower education is associated with lower household  incomes, lower basic reading level, and individuals of black and American Indian and Alaskan native race ethnicity.  Environmental factors that contribute to lower levels of education include bullying and teacher support.  Unemployment and underemployment are associated with higher rates of physical and mental health difficulties. And again, we see some health disparities within this.  And give this background, give this background because we consider the fact that our people  with epilepsy also live within these, these conditions and the research within these different conditions is just really limited.  So the other social determinant is kind of neighborhood. Overall low income urban and rural neighborhoods are associated with higher rates of poverty,  poor water quality, poor home quality, food insecurity, and under-resourced schools.  And individuals from marginalized populations are more likely to live within these neighborhoods. But there's also some unique determinants within the neighborhoods.  So lower income rural areas are more likely to have trouble with access to technology, transportation, and overall health care.  Whereas low income urban areas are more likely to experience higher rates of exposure to pollution, safety concerns, and unhealthy food sources.  So thinking about the material conditions in which specific to our epilepsy population, individuals with epilepsy are less likely to have a home ownership, more likely to live  in poverty, more likely to experience neighborhood safety issues. And people with epilepsy living in rural communities are particularly at risk.  And there are higher risk for lower socioeconomic status, education, higher rates of untreated  epilepsy, higher prevalence of comorbidities, and people from black racial ethnic backgrounds are more likely to live in these underserved areas.  With respect to school, youth with epilepsy are at higher risk for specific learning disability and ADHD compared to the general population.  75% of youth with epilepsy receive special education and 10% receive, I'm sorry, 10% repeat a grade.  And among adults with epilepsy, we also see that they experience greater barriers to employment  including fear of seizure at work, perceived stigma, transportation difficulties, and neurocognitive  difficulties that make it difficult for them to perform jobs or even decrease their self-efficacy.  Employment discrimination is also higher among individuals with epilepsy with our younger population experiencing higher rates of unlawful discharge.  Food availability, youth with epilepsy experience higher rates of food insecurity compared to youth without epilepsy.  The highest rates of food insecurity are among youth living in rural and low SES urban areas.  And having more than one insecurity is associated with significantly higher rates of ED visits as well as missed neurology appointments.  Psychosocial factors are also associated with poor epilepsy-related outcomes. And often have a more significant negative impact on quality of life and health outcomes  versus even seizure-specific factors. Some of the more relevant psychosocial factors in the context of epilepsy are perceived stigma, stress, social support, and self-efficacy.  Perceived stigma essentially is the internalization of stigma and discrimination that results in  individuals feeling shame, embarrassment, and fear discrimination because they have epilepsy.  And this perceived stigma is associated with higher levels of social isolation, more negative self-perceptions, lower quality of life, mood, and overall poor health.  And some research has shown that for perceived stigma, individuals report that that might be the worst part of having epilepsy.  Stress is another psychosocial factor that contributes to outcomes in epilepsy. Higher levels of stress, higher levels of seizure frequency, whereas it can have an  also protective factor with respect to lowering that stress and improving mood, we see lower seizure risk. Social support.  Individuals with epilepsy report lower likelihood of being in a romantic relationship. Higher levels of exclusion and bullying, especially among youth with epilepsy.  Whereas when we increase that social support, it tends to buffer against the stress and stigma. Self-efficacy is another psychosocial factor that's associated with health outcomes.  So the unpredictability of seizures, which we hear over and over within our epilepsy population is significantly associated with lower self-efficacy, lower quality of life,  lower mood. Lower self-efficacy is also associated with just overall lower levels of adjustment. And then briefly, I'm going to scroll through these.  Thinking about it from the biological behavioral perspective, looking at anti-seizure medication  and adherence, 70% of people with epilepsy could be seizure-free with appropriate diagnosis and anti-seizure medication.  However, rates of non-adherence range anywhere from 29 to 60, 70%. And some of those factors that are associated with non-adherence include lower SES, living  in poverty, lower education, having more transportation difficulties, and people from minority backgrounds  and immigrant status also experience overall higher disease burden and lower seizure adherence.  We also see some differences with respect to gender with higher rates of non-adherence among women and non-adherence among older adults with epilepsy and adolescents.  Health behaviors, smoking, higher rates of smoking, and just overall unhealthy health behaviors, smoking, lower physical activity, higher unhealthy diets.  And as I already mentioned, that women with epilepsy have more problems with seizure recurrence and other associated biological factors, puberty, genetic predisposition contribute  to some of those health determinants.  And then looking at the health care system, access to appropriate health care is critical to health outcomes. So we'll talk about that next briefly.  60% of people do not see a specialist in neurology care, and this significantly increases their risk for death.  So compared to receiving specialist care, 71% of individuals, 71% of deaths occurred in non-specialist care compared to comprehensive centers.  And specialty care also is associated with increased adherence. However, populations that are at higher risk for non-adherence are lower education, Native  Americans, no insurance location, being in rural locations or low-income urban areas. And similar outcomes can be found for surgery.  Again, having less access, lower income decreases individuals' access to surgery and also less likely to be informed about surgery among some marginalized populations.  And I'm going to scroll to just thinking about how do we apply some of this to how do we move things forward and thinking of it from a more kind of structural, the socioeconomic  and political context. So historically, people with epilepsy have been discriminated against, including being  forbidden from marriage, sterilization, and also in terms of just having access to public venues.  So it wasn't too long ago that people with epilepsy were turned away from public venues such as restaurants.  And while we've had some policies in place that have improved this, we still see the  in areas of unemployment, education, driving, access to health care through insurance, public stigma, government funding, and then overall stigma within the general population.  So moving this forward, measuring more efforts to measure social determinants of health so we can identify this within our populations, more patient-centered care, community-engaged  treatment approaches, and interventions to increase knowledge of epilepsy and increase awareness of implicit bias, so how we are actually coming into the room and the things  that we are perceiving with our patients, advocating for improved health care and policies  at all levels, providing people with epilepsy with educational materials and resource lists and their native languages at reading level to make sure that they understand and they  have access to those services, and during visits, accessing or assessing for those barriers to medication and transportation.  And at the institutional level, advocating for the resources such as transportation vouchers.

Video Summary

Dr. Lisa Clifford, a Pediatric Psychologist at Cincinnati Children's Hospital, examines the impact of social determinants on health outcomes in epilepsy patients. Her talk focuses on identifying and mitigating factors like socioeconomic status, race, ethnicity, and environmental conditions that drive health inequities among individuals with epilepsy. Dr. Clifford highlights that disadvantaged groups often experience higher epilepsy mortality and prevalence rates, with conditions affecting quality of life, such as education, neighborhood environment, and access to healthcare. Additional challenges include comorbidities such as anxiety and depression, higher risks of suicidality, and job discrimination. Structural determinants, historical discrimination, and access barriers to specialist care further exacerbate these disparities. Dr. Clifford recommends strategies like community-based interventions, education, policy advocacy, and addressing implicit biases to close the treatment gap and improve outcomes for people with epilepsy.

Asset Subtitle

Presenter:

Lisa M. Clifford, PhD, is an Associate Professor of Pediatrics in the Division of Behavioral Medicine and Clinical Psychology at Cincinnati Children's Hospital Medical Center. She is also the lead psychologist for the Epilepsy Psychosocial Service in the Comprehensive Epilepsy Center. Dr. Clifford’s research focuses on optimizing care for children and adolescents with chronic disease, including children with nutritional disorders and children with epilepsy.

Keywords

social determinants

health inequities

epilepsy outcomes

disadvantaged groups

community interventions

policy advocacy