Although most epilepsy research to date has identified several key areas of disparities, authors of a review published in Epilepsy Research noted that a multilevel life course model of epilepsy development, diagnosis, treatment, and outcomes was warranted to highlight how these disparities represent true inequities.
Epilepsy is a chronic health condition that is particularly complex in its antecedents, development, progression, treatment, and outcomes. Disparities and inequities in risk and outcomes of the disease are considered multifactorial, with differences observed between groups within countries as well as between high-, middle-, and low-income countries.
Identifying 4 key domains (structural, sociocultural, health care, and physiological) that contribute to the persistence of inequities in epilepsy risk and outcomes in the United States, the study researchers reviewed and discussed these factors individually and their connection as well. Key areas of intervention were also explored that strive toward health equity.
“The goal of this work is to highlight these domains while also providing epilepsy researchers and clinicians with broader context of how their work fits into health equity,” said the study authors.
Social determinants of health that contribute to the maldistribution of health-promoting resources among patients with epilepsy was first spotlighted as a major influence on inequities in disease risk and outcomes. Whether its availability of transportation and physical access to care, employment and its connection with insurance, or financial access to care, US patients with epilepsy may face structural barriers that contribute to adverse health outcomes, disease-related effects, and quality of life.
Patients with epilepsy have limited authorization to drive motor vehicles due to the incidence of seizures, which the researchers said creates an additional disadvantage for people with already limited economic means or who live in rural areas.
“Some states have mandatory reporting of a seizure by physicians, and thus can create a situation where a patient may be less likely to report a seizure to their health care provider for fear of losing their ability to drive,” said the study authors. “Without robust care for a person with epilepsy, there is a greater risk for breakthrough seizures that can cause serious injury or death.”
Tackling inequities caused by structural factors necessitates policies such as Medicaid expansion, funding and availability of public transportation, and assistance for those unable to work as a few avenues, noted researchers.
Sociocultural Response to Disease
Culture and cultural influences are known to have positive and negative effects on health and health outcomes. And for epilepsy, the researchers highlight that there are deeply held beliefs about what causes seizures in some cultures and religions that create stigma, and perhaps delays in seeking appropriate treatment for some individuals.
“With limitations on employment and driving after a seizure, social support is usually required in the initial stages of epilepsy diagnosis and treatment, potentially creating a caregiver burden and decreased quality of life,” said the authors.
Positive social support has been shown to help reduce the impact of stigma, while lack of this social support could exacerbate certain comorbidities, such as depression. The policy-driven maldistribution of resources should be considered as part of a health equity framework, noted the researchers, as patients of these communities may be more susceptible to either the positive or negative effects of a social response to disease.
Health Care Factors
Along with the structural barriers that may impede access and accessibility to epilepsy care, biases within the health care system is an additional influence on health inequities. These issues include treatment modalities that differ among racial and ethnic groups, individual level interactions, and interpersonal issues between a doctor or nurse with a racial and ethnic minority patient.
Adherence to medication is crucial to controlling seizures, but there are patients who are treatment resistant and may be candidates for surgery. “However, it’s possible that patients from communities that have experienced bias may be less comfortable advocating for themselves to undergo pre-surgical evaluation and are more quickly blamed for poor adherence, rather than being diagnosed with treatment-resistant epilepsy causing these breakthrough seizures,” noted the authors.
Insurance coverage and medication costs are additional factors that may impede quality of care, which disproportionately affect marginalized communities. Addressing inequities in the context of health care requires action against individual and structural bias, said the researchers, including initiatives that embrace health equity, quality improvement, and patient safety competencies at the practice level.
For epilepsy, there are 3 physiological components that are important to consider: genetics, epigenetics, and pharmacogenomics; the microbiome; and comorbidities. The researchers noted that the maldistribution of health-promoting resources can enhance the effect of underlying physiological processes in disease development and management, generating more and larger inequities in prevalence and outcomes.
Regarding epigenetics, knowledge is still emerging on the transgenerational nature of these changes. Initiatives aimed at addressing the perpetuation of inequities from historical policies and practices for certain minoritized populations are likely to take generations to produce an observable impact and thus warrant timely attention.
“Historical policies and events have set the stage for a lack of research and understanding in minoritized populations, amplifying the divide in the ability to access appropriate genetic testing and the continued deleterious effects of epigenetics,” the study researchers wrote.
They concluded that the framework presented in the review is, “Not just intended to provide a broad overview of the pathways in which inequities in epilepsy and epilepsy outcomes develop, but rather to develop a model for interventions to address these inequities.”
“Adaptation and implementation of the model, in epilepsy research and practice, will continue to advance epilepsy health equity.”
Bensken WP, Alberti PM, Khan OI, et al. A framework for health equity in people living with epilepsy. Epilepsy Res. 2022;188:107038. doi:10.1016/j.eplepsyres.2022.107038