Shining a Light: Advancing Health Equity in Overlooked Epilepsy Communities

Introduction

Epilepsy is a recognized public health problem affecting 1.2% of the US population. ¹ Evidence shows that an increasing number of people with epilepsy (PWE) are members of minority groups who experience health disparities (HD). Healthy People 2030 defines HD as:

Particular type of health difference that is closely linked with social, economic, and/or environmental disadvantage. Health disparities adversely affect groups of people who have systematically experienced greater obstacles to health based on their racial or ethnic group; religion; socioeconomic status; gender; age; mental health; cognitive, sensory, or physical disability; sexual orientation or gender identity; geographic location; or other characteristics historically linked to discrimination or exclusion. ²

Addressing HD requires a multifaceted approach including collaboration among healthcare providers, community organizations, researchers, and policymakers. Healthcare providers may not have the immediate knowledge or tools to help individuals attain health equity and may incorrectly assume that they, as clinicians, have minimal ability to improve HD in their patients. We aim to review the literature on specific minoritized groups with historically limited publications: low socioeconomic status (SES), non-English language preference (NELP), sexual and gender minorities (SGM), and rural communities to increase awareness and provide early feasible approaches to aid clinicians striving for health equity.

Socioeconomic Status and HD

Despite increasing awareness of social determinants of health (SDOH) in the last decade, epilepsy care advances have been unevenly distributed and significant disparities persist. These gaps in care delivery continue to occur at every step, with racial, geographic and economic disparities present from diagnosis to treatment to outcomes.

The diagnosis of epilepsy is complex, and often delayed even under ideal circumstances, as providers may not initially recognize events as seizure. However, even in the context of missed diagnosis, research documents racial inequities in the time it takes an individual to receive a diagnosis. ³ Benseken et al used a Medicaid cohort to demonstrate that racial minorities are more likely to have multiple healthcare encounters for seizure prior to receiving an epilepsy diagnosis and importantly, prior to receiving treatment for their seizures. ⁴

It has long been demonstrated that resource poor settings have greater treatment gaps than resource rich settings, and this persists into the current decade. For example, recent work used National Health Interview surveys have found that those living in poverty are less likely to use medications relative to higher income groups. ⁵ Inequities in access to treatment extends to surgical treatment, with lower income associated with longer time to surgery and lower likelihood of neurostimulation.^6,7 In addition, white individuals tend to be overrepresented and Black individuals tend to be underrepresented in those who receive surgical treatment. ⁸

Given the ongoing inequities in diagnosis and treatment, the persistence of disparities in epilepsy outcomes are not surprising. A study from the medical examiner's office of three large metropolitan areas in the United States showed a striking and sobering result: sudden unexpected death in epilepsy (SUDEP) is more commonly from the lowest socioeconomic quartile as compared to the highest and did not change over a 5-year period. ⁹

Language Concordant Care

According to the 2020 census, Latinx/Hispanic individuals constitute 18.9% of the total population of the United States and are the second largest racial or ethnic group after non-Hispanic whites. ¹⁰ This same census data suggests that 71% of Hispanics speak a language other than English at home, 28% of whom report that they are not fluent in English. It is important to recognize that 28% represents an alarming 17.4 million Hispanic individuals who are living, working, and attempting to thrive in the United States without being fluent in English. The Pew Research Center published data revealing that Hispanics made up more than half of the total US population growth from 2010 to 2022. ¹¹ While there has been a migrant crisis in the last few years, it is also important to note that these rising numbers are not a reflection of immigration, but of children born in the United States. Nonetheless, we can anticipate that the percentage of the population that do not prefer English as their primary language will continue to grow as our population continues to diversify.

Hispanics/Latinx communities already have a very high burden of disparities and SDOH needs as defined by Healthy People 2030. ² With a language barrier on top of these daily struggles, Hispanic/Latinx individuals face an additional layer of stress and complexity.

In 2020, a Federal Interagency Working Group proposed a definition for Limited English Proficiency (LEP) as “individuals who do not speak English as their primary language and who have a limited ability to read, speak, write, or understand English can be limited English proficient, or ‘LEP’. These individuals may be entitled to language assistance with respect to a particular type of service, benefit, or encounter.” ¹² Nonetheless, recent publications have challenged this concept as problematic for several reasons, including that identifying LEP as a language limitation of a patient does not recognize the lack of language abilities of a clinician or the problems within the healthcare system that fail to serve these patients and NELP was proposed. ¹³ Language appropriate care, like using bilingual physicians more than interpreters, has been shown to improve outcomes, reduce costs, increase patient satisfaction, and minimize errors. ¹⁴

There are numerous factors that can contribute to added stressors, poor satisfaction, and potentially worse outcomes in our Hispanic/Latinx communities. Although we cannot always change the high burden of SDOH in this population, we could strive for more culturally sensitive care to decrease some stressors, improve communication, and provide better and more comprehensive care. ¹⁵

As an example, Ann & Robert H. Lurie Children's Hospital of Chicago opened a Spanish immersion clinic for families who identify Spanish as their preferred language with hopes to provide more culturally sensitive care, improve quality of care, patient experience, satisfaction, and physician trust. The model includes office staff, a medical assistant, a registered nurse, a social worker, an advanced nurse practitioner and two pediatric epilepsy specialists, all of whom are fully bilingual. We understand that language and culture are only part of the story, but we hope to have an impactful contribution to the epilepsy care of this population with this model of language concordance.

As we strive for health equity and justice, we should consider other possible solutions and initiatives. Recognizing the potential impact of language concordance models, thoughtful consideration should be given to implementing incentive pay for language fluency among healthcare workers across various levels, including physicians, nurses, medical assistants, and staff, particularly in communities where the need is most pressing. Additionally, exploring reimbursement adjustments when caring for individuals with high burden of SDOH and for the need for interpreters, scheduling and staffing modifications and the integration of care coordinators to enhance support for the most vulnerable individuals in our communities. Lastly, diversifying recruitment practices is paramount in our pursuit of these objectives.

Disparities in Transgender and Gender Diverse Community Care

SGM and, in particular, transgender and gender diverse (TGD) individuals have a high burden of chronic conditions. ¹⁶ Hypertension, diabetes, and hyperlipidemia are elevated in TGD individuals. ¹⁶ Depression and suicidal ideation are elevated in TGD individuals, as is mortality due to suicide ¹⁷ ; moreover, nonsuicide mortality is also twice as high in TGD individuals as in cisgender individuals, ¹⁸ reflecting a large need for improved healthcare for the TGD community. Neurologic conditions in particular affect TGD individuals: compared to cisgender beneficiaries, TGD Medicare beneficiaries have elevated rates of dementia (18.2% vs 12.2%) and stroke (16.5% vs 12.2%). ¹⁶

SGM have historically faced prejudices from the medical field, as well as systemic discrimination and stigma contributing to delays in accessing care. ¹⁹ These systemic factors can lead to internalized stigma, social isolation, chronic stress, and epigenetic changes, all contributing to adverse health outcomes. ²⁰

The burden of epilepsy is higher in the SGM community than in the cisgender population. Analysis of Medicare beneficiary data showed a higher rate of epilepsy in TGD individuals, whether Medicare eligibility was based on age or disability status. ¹ The National Health Information Survey in 2017 identified higher rates of self-reported epilepsy among LGBTQ+ individuals compared to heterosexual individuals; the rate of epilepsy in LGBTQ+ individuals was 3-fold higher than heterosexual individuals after adjusting for demographic information. ²¹

The reasons for the higher burden of epilepsy reported by SGM are unknown. Though exogenous hormones have the potential to affect seizure frequency, no studies to date assess the effect of hormonal treatment for gender-affirming care on seizure frequency, and any specific barriers to accessing specialty epilepsy care experienced by this population are unknown. As epilepsy specialists continue to work to understand all the factors influencing health in PWE, we must not overlook the needs of this underserved population.

Care Challenges in Rural and Underserved Regions

Approximately one in five people in the United States resides in a rural area,^22,23 and nearly two thirds of rural areas are designated health professional shortage areas. ²⁴ Rural residents have known and significant disparities in health when compared to urban dwellers. ²⁵ A comprehensive approach to addressing health care challenges in rural and underserved regions is paramount to improving health outcomes. Limited health literacy regarding preventive care, chronic disease management, and treatment options are well known to contribute to disparities in healthcare outcomes in rural and underserved communities.

Barriers to optimal epilepsy management are both common and complex and involve individual, community and health-system factors. ²⁶ The consequences of epilepsy are further exacerbated by the fact that substantial geographic, racial and ethnic disparities exist in neurologic specialty care.^6,27 In epilepsy, many factors contribute as to whether or not an individual receives high quality care, including SES, education, and access to transportation. ²⁶ Others, such as lack of employment, lower household income, limited insurance coverage, and long commute distances to health care providers, reveal additional barriers to optimal healthcare delivery.^6,28 Taken together, these factors can lead to delays in care, reduced access to available diagnostics and treatments, and lack of adequate patient support and education in the community. Prior work has demonstrated that geographic location of residence influences long term monitoring access ²⁹ and the timing of referral for epilepsy surgery evaluation. ³⁰

Rural and underserved communities are uniquely at risk for barriers to care. ³¹ People with active epilepsy are greater than five times more likely than the general population to lack transportation to healthcare services. ³¹ Closure of rural hospitals hinders healthcare access for patients living in rural communities. ³² Comprehensive Epilepsy Centers are mostly concentrated in urban areas and overall access to neurologists is challenging because of a low supply nationwide.^33,34 Clinical providers of all disciplines, including nurses, pharmacists, physicians, and mid-level providers, like physician assistants and nurse practitioners, are difficult to recruit and retain in rural settings and workforce challenges for rural hospitals have been further accentuated in the COVID-19 era, widening the HD between urban and rural communities as rural populations face more limited health care capacities. ³⁵

Addressing the needs of rural and underserved populations in epilepsy requires culturally competent and inclusive neurologic care, further investment in telehealth deliverable evidence-based epilepsy self-management programming,^36–38 facile and meaningful social service programming that reaches people in their diverse communities, ³⁹ patient and provider education initiatives, advocacy for policy changes, and research efforts focused on understanding and reducing disparities.

Epilepsy self-management programs have been identified by the Institute of Medicine as a mechanism for improving the lives of PWE. ²⁶ Education for rural serving multilevel primary and behavioral care providers,^40,41 and nontraditional health professionals inclusive of community health workers (CHWs) is paramount for the epilepsy community to mobilize around. ⁴² Recognizing the limitations of traditional clinic and referral models and treatment algorithms in rural and underserved communities is required for progress in equitable and timely epilepsy care. Interventions that enhance enabling factors for guidelines-based care and that can increase opportunities for primary care physicians to consult with neurologists and/or refer their patients with uncontrolled seizures to epilepsy centers are needed. ⁴⁰ Given the numbers of PWE cared for in primary care settings the need for accessible epilepsy education for primary care teams is vital to lowering patient risk. ⁴¹ Beyond clinical workforce considerations, strengthening of the rural public health workforce and infrastructure would aid in improving the lives and health outcomes for patients with chronic disease in rural regions, including for those with epilepsy.

At Dartmouth Health, situated in rural Northern New England, there is emphasis placed on developing a workforce to address HD by educating multilevel primary and behavioral care providers and training CHWs as nonmedical personnel to enhance the care for PWE. CHWs can be trained to provide an important set of skills and expertise that have been effective in other disease states (eg, hypertension, asthma).^42,43 Efforts to replicate and advance models of CHW integration in clinical and community streams of epilepsy care should be considered.^44,45 A pilot implementation at Dartmouth has demonstrated that an epilepsy trained CHW integrated onto an epilepsy clinic care team can provide SDOH screening, address nonmedical needs with available community, state and federal resources, and successfully deliver epilepsy self-management programming. ⁴⁶

Multisector collaborative efforts inclusive of multilevel health professionals, public health leaders, community organizations, advocacy groups, policymakers, and individuals affected by epilepsy are essential to ensure equitable access to quality epilepsy care. This multisector approach is vital to ameliorating geographic inequities, as stakeholders, from nurses, physicians, and pharmacists to local government officials, can then tailor public health programs and access to align with the needs of rural dwelling PWE. Engaging PWE in co-producing solutions is paramount for successful design and implementation of programmatic support targeting HD. Of equal importance is advancing data informed research focused on the specific challenges PWE residing in rural and underserved communities face. Current and prospective SDOH data, gathered routinely as a care standard, is needed to adequately characterize and address disparities in health care and improve outcomes for those most vulnerable.

Discussion

In everyday practice, across the spectrum of where PWE receive care, there are several equity-improving strategies clinicians can work towards implementing. The first is standardization; work across medical disciplines has shown that adherence to clinical guidelines improves outcomes. In addition, multiple groups are trying to develop access solutions for certain populations that encounter additional care-delaying or preventing barriers. For example, multi-stakeholder groups that include patients and caregivers have collaborated to develop telehealth tools to facilitate telemedicine appointments, ⁴⁷ screen for high risk persons and create rapid referral pathways, ⁴⁸ and expand telehealth access to evidence-based epilepsy specific self-management programs, including adapting these psychoeducation supports to other cultures and languages. ⁴⁹ Depending on one's practice context, some of these strategies for rapid referrals, patient navigation, and self-management may be easily implementable.

Finally, notwithstanding these well-documented disparities in care, the Veterans Health Administration has shown that their health system may provide more equitable care; race/ethnicity, rurality and education were not associated with time to epilepsy monitoring unit referral for their patients. ⁵⁰ These findings suggest that policy level changes like improved medical insurance coverage and other system-level care-coordination strategies may result in reduced care disparities.

Conclusions

Despite lacunes in data regarding HD in selected minoritized groups of PWE, we have highlighted specific health care challenges that emphasize the effects of disparities and have provided preliminary actionable solutions upon which clinicians and researchers can build to improve quality of care for all PWE. There are multiple other minoritized groups of PWE and disparities that we did not address but should be explored in future literature. A major hindrance to understanding HD in epilepsy is the lack of published research that includes key SDOH variables, such as race, ethnicity, geography, SES, SGM, and LEP; and when demographic data is presented, it is typically neither analyzed nor discussed. It is critical to appreciate that striving for health equity is an inexorable never-ending component of all research, quality improvement and clinical care; and that inequities and their consequences are best defined by people living with epilepsy and best addressed by a broad spectrum of epilepsy stakeholders.