Epilepsy Essentials: Social Determinants of Health in Epilepsy

For many years now, the epilepsy community has focused on improving treatment, with many positive results, so that we have an array of options to improve outcomes for people with epilepsy, from over 30 medications, 3 devices, and surgical options to a seemingly endless pipeline of drugs in development. Some of these treatments have achieved unprecedented seizure reduction rates in clinical trials, moving us closer to the goal of seizure freedom, and improving quality of life.¹

As we describe in our new book, The Role of Social Determinants of Health in Epilepsy, there is a sad reality that these benefits are only for people who can access care from neurologists and epileptologists, which many individuals are not able to do.² The situation is reminiscent of the live-action film How the Grinch Stole Christmas, starring Jim Carrey. When the Grinch describes his schedule for the day, he notes his 5-o’clock appointment is to: “solve world hunger; tell no one.”

Social determinants of health can be seen as a version of that. We have lots of options, some of which may be the ultimate game changer for some individuals, but it is only if they have the money, the right insurance, certain employment, and more that they can ever even get close to it.² There is unequal access to the amazing advances we have seen in medicine, not just for epilepsy, but for many aspects of health care.^3-7

The Scope of the Problem

All individuals exist within society, so all have social determinants—some more positive, and others more negative. Social determinants of health care include not only what health care people are able to access, but also how they are treated when they do.^2,7-9 Physicians should maintain awareness of an individual’s social determinants of health, in particular, during clinical decision making (Box 1).

From a health perspective, we also need to understand how these determinants impact individuals’ opportunities for good health, and how unequal those opportunities are in the US. These factors include housing, education, access to food, climate, pollution, neighborhood, social stressors, and much more. Although this is intuitive to many in health care (eg, access to healthy and affordable food affects people’s health), much of the health care system is hyper-focused only on what happens within that system—after a person walks through the door of a clinic or hospital and during their follow-up care. Upstream factors that affect how and when people get into the health care system, however, may have much deeper impacts on health outcomes. As physicians, it is important to be concerned about social determinants of health that affect people before they become our patients because that drives the outcomes they have when they do become our patients.

In short, to provide the best care and drive the best possible outcomes, health care professionals at all levels need to accept the challenge of considering social determinants both inside and outside of health care.

How Social Determinants of Health Intersect With Epilepsy

There is evidence that being subject to racism and having certain ethnic backgrounds (ie, Native American/Indigenous, or Hispanic) reduces access to appropriate epilepsy care.^10-12 This can vary by region in the US. In a study we did with our colleagues, data from the Arizona Medicare/Medicaid database showed that those identified in the database as Native American persons with epilepsy were the least likely to receive care for their epilepsy.¹³

Factors that relate to having fewer social supports also correlated with receiving less appropriate care, including age, widowhood, and homelessness. Seeking seizure care in an emergency department, free clinic, or urgent care center, rather than from a primary care physician or neurologist, also decreased the likelihood of appropriate epilepsy care. Other studies have also shown that access to tertiary care epilepsy centers is affected by living in a rural vs urban setting.¹⁴

Notably, Arizona is a Medicare/Medicaid expansion state with 30% of the state population enrolled, resulting in a demographic that closely matches the overall demographics of the state.^13,15,16 This offers good care, and most people with epilepsy were receiving appropriate treatment. This underlines the findings that certain social determinants were associated with poorer care and emphasizes how important it is to address these both during epilepsy care and outside the health care system.

What Can an Individual Neurologist Do?

Social determinants of epilepsy care affect not only how long it takes individuals to receive an epilepsy diagnosis and if and when they are prescribed antiseizure medications (ASMs), but also whether they fill a prescription for an ASM when they do receive it.^10,13 Although it is not well understood why this occurs, it presents an opportunity for neurology practices to improve care and outcomes by asking patients with epilepsy about their potential insurance barriers and whether they have social supports that can help encourage their adherence to treatment. Other questions that can be useful when considering how social determinants may affect a person’s ability to adhere to treatment are in Box 1.

When factoring the overall balance of positive and negative determinants of health into care, it is also important to consider how these may layer on top of one another or intersect (eg, not being able to drive may affect ability to maintain employment). It could be expected that the more negative factors there are and the more these intersect and affect each other, the greater the impact on epilepsy and other health outcomes will be.¹⁷ It could also be that specific positive social determinants may mitigate the effects of negative determinants. Both are areas yet to be studied.

Epilepsy outcomes that are measured (eg, rates of seizure reduction, adverse events, and quality of life with ASMs, epilepsy surgeries, and neuromodulation devices) are improving. However, these outcomes do not include the many people with epilepsy who are not able to access care or adhere to treatment. Many health care professionals may feel that they can only affect the people they see, but we would posit that physicians can be involved in improving epilepsy outcomes for this population by being involved in policy discussions and advocacy. Some may find this uncomfortable and that it takes us out of our realm of providing care, and we would argue that it is part of improving care. For example, if practices did not have to spend time on clearing prior authorizations with insurance companies, that time could be spent following up on whether prescriptions were filled and medicine is being taken, especially for patients with fewer social supports.

At the population level, social determinants of health and drivers of health inequity are primarily upstream of clinical care. What happens clinically is, in part, determined by what happened before the physician ever encountered an individual. Physicians can play a role in improving outcomes by addressing these upstream issues in ways that are comfortable to each of us as individuals, making use of the influence that health care professionals still have in society. Advocating for improved health care and for policies that affect the upstream factors of health, provides yet another way physicians can use their influence to positively affect the health of their patients.

This can be done on a national or state level by communicating with legislators and policy makers at events such as the American Academy of Neurology’s Neurology on the Hill or events put on by the Epilepsy Foundation or CURE Epilepsy’s SUDEP (sudden unexpected death in epilepsy) Action Day (Box 2). Bringing the focus closer to home, it can also be done by asking questions at the level of your institution or department; for example, a physician can ask whether transportation vouchers can be arranged for persons with epilepsy who may not be able to drive safely and do not have someone who can drive them to appointments. Asking about and participating in epilepsy safety training in your community is another local way to be involved beyond the clinic.

As neurologists, we are problem solvers and the first step to addressing a problem is understanding the problem itself. For anyone treating people with epilepsy, we hope our new book will be of use in that quest.

Summary

Health inequities that arise from social determinants of health affect how patients are treated within the health care system, whether a person can access health care, their health when they do access care, and their ability to adhere to treatment. As discussed, in epilepsy there is convincing evidence that social determinants affect access to care, prescribing patterns, and adherence to treatment. Other than being mindful of social determinants when caring for patients, it may be overwhelming to physicians to consider how they can affect social determinants and increase health equity. These issues are larger than a single individual and so are the solutions; individuals, however, can each be part of such solutions. We encourage physicians to consider participation in the community, public health, and public policy as part of care. Doing so may improve patient outcomes and provide community and increased wellness to physicians in these times of unprecedented burn-out.¹⁸