Epilepsy & Behavior 41 (2014) 283–289

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Targeted Review

Social determinants of health in epilepsy Magdalena Szaflarski ⁎ Department of Sociology, University of Alabama at Birmingham, HHB 460H, 1720 2nd Ave South, Birmingham, AL 35294-1152, USA

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Article history: Received 9 May 2014 Revised 5 June 2014 Accepted 7 June 2014 Available online 4 July 2014 Keywords: Social determinants of health Health disparities Disparities in care Socioeconomic factors Epilepsy

a b s t r a c t Social factors have been identified as key drivers of epilepsy care, outcomes, and disparities, but there is a limited understanding of what these factors are and how they translate into disparities. This targeted review provides an overview of the social determinants of health framework and applies this perspective to the literature about social and psychosocial factors in epilepsy; a social determinants of health — epilepsy model is proposed. The key social determinants of health in epilepsy include socioeconomic status, race/ethnicity, age, and gender. For example, low socioeconomic status and minority status have been associated with a higher risk of epilepsy, more hospitalizations and emergency room visits (versus neurology services), antiepileptic drug nonadherence, and a lower rate of epilepsy surgery. Such differences in care/treatment and outcomes translate into health disparities, many of which are considered unjust (inequitable) and modifiable through social action. Other social determinants of health include structural and sociocultural contextual conditions (e.g., health economy, policy, and social stigma/discrimination) and mediating mechanisms including material (e.g., housing), behavioral/biological (e.g., adherence), psychosocial (e.g., perceived stigma), and health system (e.g., access) factors. There are complex relationships among social determinants of health in epilepsy, which remain poorly understood and hamper efforts to address and eliminate disparities in epilepsy care and outcomes. Further empirical work grounded in sound theory and robust methodologies is needed to identify points of intervention and design effective and socially acceptable solutions to any pervasive disparities in epilepsy. © 2014 Elsevier Inc. All rights reserved.

Key questions 1. What are ‘social determinants of health’ (SDH) and their relationships to epilepsy care and outcomes? 2. What are health disparities? What is known about disparities in epilepsy care and outcomes? 3. What are the mediating pathways through which SDH influence epilepsy care and outcomes? 4. How do we proceed with disentangling SDH in epilepsy and eliminating epilepsy-related disparities?

1. Introduction The U.S. Institute of Medicine (IOM) has concluded that there are significant social barriers to optimal care and health outcomes for people with epilepsy (PWE) [1]. The IOM cites a range of social factors at play — ⁎ Tel.: +1 205 934 0825. E-mail address: szafl[email protected].

http://dx.doi.org/10.1016/j.yebeh.2014.06.013 1525-5050/© 2014 Elsevier Inc. All rights reserved.

from gaps in access and provision of care to stigma and discrimination against PWE. Social factors in epilepsy are sometimes examined from the “burden of disease” perspective; the impact of epilepsy has been described as having epidemiological, socioeconomic, and clinical dimensions [2]. Other literature describes specific disparities in epilepsy, including gaps in medical and surgical treatment, disability, incidence and prevalence, and knowledge and attitudes [3]. These disparities have links to socioeconomic status (SES), race/ethnicity, and other social factors. A large body of research has also examined psychosocial dimensions of epilepsy (e.g., self-mastery and social support), especially in the context of quality of life (QOL) [4]. However, the expanding knowledge of social and psychosocial factors in epilepsy has only begun to be anchored [5] within an overarching framework of the so-called social determinants of health (SDH). This framework has guided global/public health efforts for several decades and has potential to inform social and psychosocial interventions in epilepsy. To further advance the understanding of social factors and action on inequalities in epilepsy, this targeted review provides an overview of the SDH concepts and theory and then applies this framework to address four key questions: 1. What are ‘social determinants of health’ (SDH) and their relationships to epilepsy care and outcomes?

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2. What are health disparities? What is known about disparities in epilepsy care and outcomes? 3. What are the mediating pathways through which SDH influence epilepsy care and outcomes? 4. How do we proceed with disentangling SDH in epilepsy and eliminating epilepsy-related disparities?

2. Conceptualizing SDH Social determinants of health are defined as the social, economic, political, and environmental factors that contribute to health and disease, which also interact with biological factors [6–8]. There are many historical accounts of the influence of social factors, such as economic resources and living conditions, on health and well-being. The scientific literature on social factors in health was launched with US-based mental health research in the 1960s which found significant associations between social disadvantage, psychological distress, and psychiatric disorders [9]. Two decades later, British researchers documented higher mortality and morbidity rates among individuals from lower social classes compared with their higher-class counterparts [10], as well as variation in disease by occupational skill level, wages, working conditions, and prestige — indicators of what became known as socioeconomic status (SES) [11]. Later, it was also confirmed that mortality increased with each reduction in occupational grade [12] — a phenomenon known today as the SES-health gradient. These gaps, which existed despite Great Britain's universal access to health care, were termed for the first time as health inequalities or health disparities. This work led to the development of the SDH model [13] and establishment by the World Health Organization of the Commission on Social Determinants of Health. Since then, the causal connection from SDH to health has been established through numerous studies, and researchers have essentially

concluded that social factors are a fundamental cause of health and disease [14,15]. The current SDH model (Appendix) specifies a broad range of factors that impact health and health disparities [16]. We apply this framework to understand SDH in epilepsy (Fig. 1). The general SDH framework distinguishes between structural and social determinants and intermediary determinants of health (mediating mechanisms). The most distal factors in the model are the structural and social factors that make up the socioeconomic and political milieu: governance, macroeconomic policies, social policies (labor market and housing), public policies (education, health, and social protection), and cultural and societal values. Examples of epilepsy-related broader structural and sociocultural forces include the definition of epilepsy as a neurological condition, regulation of epilepsy care and treatments, or public perceptions of PWE (e.g., social stigma). The more proximal factors among the structural and social determinants are those that define an individual's or group's SES, with combined effects of class, gender, and race/ethnicity. The most proximal intermediary determinants include material circumstances (living/working conditions and food availability), behaviors and biological factors (e.g., treatment adherence and smoking), and psychosocial mechanisms. Health system is identified as another social mechanism which, in addition to direct influence, links material, behavioral/biological, and psychosocial factors with health and health inequalities. Health system level factors in epilepsy include, for example, access to and use of epilepsy providers, diagnostic tools (e.g., EEG), and treatments (e.g., AEDs and surgery). Notably, the structural and social determinants are connected with the intermediary determinants through the effects of social cohesion or social capital (often defined as social network-based resources [17]). Social networks can be an important source of social support and epilepsy-related information for PWE.

Fig. 1. The social determinants of health in epilepsy (SDH-epilepsy) conceptual framework. Adapted from the Social Determinants of Health (SDH) Conceptual Framework published in Solar, O and Irwin, A (eds). A conceptual framework for action on the social determinants of health: social determinants of health discussion paper 2 (Debates, Policy & Practice, Case Studies), Geneva: World Health Organization, 2010. Available online at: http://www.who.int/sdhconference/resources/ConceptualframeworkforactiononSDH_eng.pdf. Examples of epilepsy-related variables are listed for the different SDH concepts/domains.

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The following discussion will focus on the literature (primarily from North America) and aim to link SDH to epilepsy care and outcomes to assess the extent of our understanding of SDH in epilepsy. It is important to keep in mind the different and specific levels of analysis when examining SDH. Both social factors and epilepsy-related outcomes can be observed (and measured) at the societal, community, and individual levels. Robust theory and research design/methods (e.g., epidemiological, individual-level, or multilevel modeling) are required to capture this complexity. 3. Key questions 3.1. What are ‘social determinants of health’ (SDH) and their relationships to epilepsy care and outcomes? The key SDH include SES, race/ethnicity, age, gender, and contextual conditions. Some of these factors, especially individual race/ethnicity, age, and (typically) gender, are physical/demographic characteristics that cannot be changed. However, these physical characteristics also have social meaning and are associated with social statuses based on social power and access to social resources. Thus, even though individual demographics are fixed, social statuses linked to these demographics vary by social context and are, theoretically, amenable through social action. For example, some societies protect the more vulnerable populations, such as the young, elderly, or pregnant women, through publicly funded nutrition, housing, or health-care programs, while other societies do not offer free resources based on age or gender. People with epilepsy who fall into a vulnerable category experience variable access to and quality of epilepsy care based on social setting. This is why demographic characteristics are considered SDH. 3.1.1. SES Socioeconomic status is a well-established and extensivelyresearched concept. The best SES measures are continuous and combine information on individual's occupation, income, and education. However, categorical SES measures stressing income and/or education are more likely to be available and used in medical research. Studies have documented that socioeconomic deprivation increases the incidence and prevalence of epilepsy, that PWE have lower education, household income, and health status compared with the healthy population, and that finding employment is difficult for PWE [3,5]. Further research has indicated that these relationships are fairly complex. A study using the SDH framework [5] has found no difference in the prevalence of epilepsy based on poverty status (b200% federal poverty level). However, controlling for material resources (annual income and housing situation), poverty was associated with AED nonadherence. This association was explained after accounting for insurance, underscoring the importance of access to epilepsy care and medication coverage for PWE. Other research has also shown a significant association between poor compliance and lower SES and insufficient insurance [3]. Access to epilepsy medical and surgical care can be limited by SES and is often framed as a disparity issue (see Section 3.2). Furthermore, education has SES-related and independent effects on health [18]. Some research shows that PWE may have academic achievement levels similar to those of people with other chronic conditions and the general population [3,19]. However, the same research indicates that PWE are less likely to complete secondary or postsecondary education compared with the general population. Education and other SES effects on outcomes in epilepsy extend beyond schooling and occupational position. They are mediated, in part, through health literacy — the ability to gain critical health knowledge needed for making informed decisions regarding disease management. Research has shown that low health literacy is associated with poorer clinical outcomes, increased mortality, and underutilization of health services and that as many as 25% of Americans have low health literacy [20]. Although health literacy programs are underway to educate PWE

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about their condition and treatment options, research and theoretical frameworks linking health literacy to epilepsy outcomes are limited and need further attention [20]. In particular, strategies adapted to improve health literacy among PWE should be sensitive to and consider the unique SES circumstances of individuals. 3.1.2. Race/ethnicity Race and ethnicity are distinct but overlapping concepts. Sociologists define race as a socially constructed status based on observed phenotypic differences among individuals (e.g., US whites, blacks, Asians, and Native Americans). Ethnicity is a voluntary identity linked to geographic place of birth or national heritage (e.g., Hispanic/Latino). Research suggests that epilepsy care and outcomes differ by race and ethnicity [3,21–23]. For example, African-American PWE have been shown to have higher rates of hospitalizations and ER visits, lower rates of surgery, and more deaths after surgery compared with their white counterparts; to what extent SES and insurance status explain this difference remains unclear. However, seizure control did not differ by race/ethnicity (or gender and insurance) in one study [24]. Also, older Native Americans have been shown to be less likely to see neurology providers for their seizures compared with whites [25]. Some cultural groups may hold traditional beliefs about epilepsy, which may prevent them from pursuing Western medical treatments [21]. Furthermore, immigrants may face unique challenges, beyond knowledge and attitudes about epilepsy, for example, a language barrier or lack of understanding of Western medicine/health systems which may limit their access to epilepsy care or treatments, resulting in poorer outcomes. 3.1.3. Age The incidence of epilepsy is higher in children and aging adults. With continuing population growth in the developing world and aging populations of the developed countries, age will remain a significant factor contributing to the burden of epilepsy. Age is not only a demographic variable. Age is associated with social roles and social position which comes with a level of SES, prestige, and access to resources. Normal functioning of children and aging adults with epilepsy is affected by limits on social participation (e.g., schooling/education and labor force) and need for care by others. For example, U.S. children with epilepsy experience declines in academic performance when they have reoccurring seizures [26,27] and show poorer social skills and sense of control [28]. Sociocultural systems must adopt to address the needs of age-specific groups with epilepsy, including provision of age-based epilepsy care (pediatric and geriatric) and auxiliary services (e.g., psychiatry, psychology, and social work) and access to such care (insurance for children and seniors). 3.1.4. Gender Gender appears to be a factor in epilepsy among adults but not among children. For example, women appear to have more problems with seizure recurrence and have a higher utilization of neurology versus general services and a higher rate of hospitalization compared with men [19]. However, children with epilepsy have similar rates of surgery regardless of gender [29]. Quality of life in epilepsy may differ between women and men; for example, childbearing issues and higher rates of depression among women versus men with epilepsy [30] may contribute to these differences. Among children, however, girls and boys with epilepsy appear to have similar QOL [31]. 3.1.5. Contextual SDH There is an emerging emphasis on the structural and sociocultural SDH because countries are developing strategies to address those SDH that are considered modifiable [16]. Neighborhood conditions (e.g., community SES, safety, and availability of health services) have been linked to health and disparities [16], but there is a dearth of such data in epilepsy. One study [3] had found that PWE were less likely to report their neighborhood as safe compared with others. This may reflect lower-

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quality material/living conditions as well as social stigma and isolation experienced by PWE in their communities. A broader contextual factor is region/economic development. Developing countries have a higher prevalence and incidence of epilepsy compared with developed countries, and some regional differences within countries are also observed [2]. Some research has also indicated urban–rural differences in epilepsy/epilepsy care, but the evidence is inconclusive [3]. The macrostructural domains of importance include health policies, budgets, health-care and treatment regulation, and insurance systems. Economic burden of epilepsy is significant and includes health-care system and individual costs [2]. The incidence and prevalence costs in the United States have been estimated at over $11 million and $12.5 million, respectively [32]. Effective prevention and treatment of epilepsies are needed to reduce these costs. Proposed solutions include closing gaps in epilepsy care, strengthening policies (e.g., antidiscrimination laws), and supporting epilepsy advocacy [1]. The sociocultural milieu also plays a role in epilepsy. Public awareness and knowledge of epilepsy can significantly affect perceptions of and attitudes toward PWE [1]. Awareness of epilepsy has increased over time reaching 90–95% of respondents, but some groups including those with only primary grade education, college students, and people living in economically vulnerable or culturally conservative areas (e.g., U.S. South) appear to have limited knowledge of epilepsy [3]. It is also unclear whether greater social awareness of epilepsy has been translated into more positive attitudes and behaviors toward PWE. Anecdotal evidence from PWE and families of PWE points to persisting stigma and discrimination against PWE, especially in work and educational settings. For example, the percentage of workplace discrimination claims filed by PWE in the US that were found “with merit” has increased despite the Americans with Disabilities Act [1]. Research has overwhelmingly focused on perceived stigma (see Section 3.3), but stigma is a sociocultural phenomenon that affects whole groups of people. Stigma has recently been reconceptualized as “the cooccurrence of labeling, stereotyping, separation, status loss, and discrimination in a context in which power is exercised” (p. 813) and proposed to be a fundamental cause of population health inequalities [33]. 3.2. What are health disparities? What is known about disparities in epilepsy care and outcomes? Health disparities or health inequalities are usually defined as the unequal distribution of health status across groups or populations based on SES, gender, or race/ethnicity. Health-care disparities are defined as systematic differences in the use of health-care services according to social factors. A broad range of social inequalities in health/health care are considered unjust and avoidable and are referred to as health inequities [8,13]. There is much debate about which health/health-care inequalities are modifiable through social interventions. Societies make this determination based on scientific knowledge, availability of resources, public acceptance, and ideology [2,34]. It has been noted [35] that measuring disparities in care involves considering environmental, personal, and health system factors. Environmental factors typically mean community resources, such as housing, transportation, and social capital. Health system factors include health-care resources and organization. Personal factors are social statuses and psychosocial factors. Measuring health inequalities is debatable, but state-of-the-art approaches have recently been compiled [36]. The knowledge of disparities in epilepsy is growing, but comprehensive, comparative data remain scarce [2]. A systematic review [3] has identified five domains of potential disparities in epilepsy care: access to medical and surgical treatment, outcomes following medical/surgical treatment, attitudes/knowledge about epilepsy, epidemiology, and disability. However, data on these domains were limited. For example, only a few studies examined disparities in medical/surgical treatment, and their results were mixed. Among these studies, one study reported a lower rate of surgery in African-American PWE versus whites, but the

difference was not significant after adjusting for several factors including education and gender [37]. A recent US national study using data for 1990–2008 has provided a more robust confirmation of racial and SES-based disparities in surgery: white and privately insured patients were found to be more likely to have surgery compared with their respective minority and publicly-insured counterparts [38]. Because white patients in that study were more likely to have private insurance compared with minority patients, the authors speculate that access to care and financial considerations of treatment centers are possible barriers to surgery for minority and low-SES PWE. Other studies have reported lower AED adherence among those with lower SES, fewer financial responsibilities, or Medicaid or no insurance [3]. In some studies, adherence was also lower in non-Caucasians and in cases where there was poor communication with clinicians. Furthermore, one study documented lower mental health care in children with epilepsy to be related to lower parental education and older age, among other factors [39]. Some studies have pointed to inequalities in provider type, with children having higher use of neurologists, emergency rooms, and hospitals compared with adults, women having higher use of neurologists and lower use of family physicians compared with men, and aboriginals having more emergency room visits and hospital admissions and lower use of neurologists compared with nonminority PWE. A recent study has also confirmed consistently higher use of emergency rooms and general practitioners among low-SES versus higherSES patients [35]. However, hospitalizations and neurologist visits were similar for both groups. In addition, patients who were treated at low-SES sites had a higher likelihood of uncontrolled seizures, side effects, internalized stigma, and poor overall QOL. The authors conclude that SES-related disparities in epilepsy service use and outcomes persist among PWE receiving regular care. 3.3. What are the mediating pathways through which SDH influence epilepsy care and outcomes? 3.3.1. Material conditions Housing, school/employment situation, and nutrition are examples of material factors potentially mediating the relationship between SDH, care, and outcomes in epilepsy. Material assets provide people with stability and allow them to reside in places characterized by higher standards of living and better access to and quality of health care. These conditions, in turn, are conducive to better outcomes. Home ownership was found to be associated with a lower risk of epilepsy among Icelanders [40] and was one of several factors that helped to explain the risk of epilepsy in the U.S. population [5], although the effect of housing versus other factors was not reported. 3.3.2. Behavioral and biological factors Adherence to AEDs is essential for seizure control and long-term outcomes in many PWE, but less than half of PWE adhere to AEDs [5, 41]. Antiepileptic drug nonadherence is more likely among the elderly, women, non-Caucasians, individuals living in poverty, and those with higher number of comorbidities [5,42]. Other behavioral factors that may influence outcomes in epilepsy include unhealthy diet, smoking, or sedentary lifestyle, which have been linked to psychological distress and poverty [43]. Research has shown that PWE exercise less, smoke more, drink more soda, and eat less salad compared with other groups, and that AEDs may cause nutritional deficiencies [44]. However, PWE have been reported to walk more for transportation, which could help with their physical fitness. Researchers [44] call on providers to step up their efforts to engage PWE in health promotion. 3.3.3. Psychosocial mechanisms Psychosocial factors in epilepsy include epilepsy-related knowledge and attitudes, perceived stigma/discrimination, social networks/social support, and self-esteem/self-mastery. Some psychosocial factors are thought to be sources of stress (e.g., stigma/discrimination), while

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others may have stress-buffering effects (e.g., self-mastery and social support). In addition to having direct influence, psychosocial mechanisms are proposed to mediate the relationships between SDH, epilepsy care, and outcomes. For example, PWE living in poverty have been shown to experience higher psychological distress and have lower self-perceived health compared with other groups [43]. Quality of life in epilepsy can be maximized by addressing the various psychosocial mechanisms [45]. Research shows that knowledge and attitudes among PWE may affect outcomes [3], but evidence about the effects of SDH through knowledge/attitudes is limited. For example, one study found that knowledge about epilepsy did not vary by age or education, though many PWE had poor knowledge of legal issues related to driving and employment [46]. Another study examined information-seeking by families of children with epilepsy and found that families of children with intractable epilepsy and parents with more education used more information sources [47]. Furthermore, some patients may exaggerate risks of epilepsy surgery, and African-American patients may distrust their providers [48]. Perceptions of stigma and discrimination are also common among PWE and can cause stress and lower self-esteem, resulting in poorer QOL, social functioning, and psychological well-being. Accumulation of stress over time is especially harmful to health and well-being. Epilepsy has historically been misperceived in popular culture, often leading to social isolation and stigmatization of PWE. Social isolation, stigma, and discrimination can significantly diminish QOL of those affected by epilepsy [1]. In one study, many students with epilepsy kept their epilepsy status a secret because they did not want to be treated differently, but their parents often did not disclose their child's status because they did not want the child to face stigma [49]. Internalized stigma may lower outcomes in epilepsy even in individuals whose seizures are well-controlled [1]. Self-mastery and social support may buffer negative effects of stress due to stigma and other factors in epilepsy. For example, research shows that the unpredictability of seizures may lead to weak sense (locus) of control. People with epilepsy who feel that they have little control over their condition (external locus of control) are more likely to be depressed and show poor adaptation to their illness compared with individuals who have internal locus of control [5]. However, research has found little support for SES-based disparities in selfmanagement of epilepsy [50]. In addition, social support can improve psychological well-being of PWE. For example, a stable family situation (married versus divorced parents) emerged as a significant predictor of QOL in children with epilepsy, controlling for other factors [31]. The authors argue that families are important source of social support and that strong families can buffer effects of a child's illness. 3.3.4. Health system Health system factors also mediate the relationships between SDH, epilepsy care, and outcomes and can be structural or psychosocial. Structural health system factors include formal access (e.g., distance to facilities and transportation), source of epilepsy care, insurance, and prescription coverage. As noted earlier, low-SES and minority status are associated with lower adherence and higher rates of hospitalizations and emergency room visits, and privately insured patients are more likely to undergo epilepsy surgery compared with publicly-insured patients [51]. Sociodemographic and insurance-based differences in epilepsy care can be explained by source of care [52]. Other research has shown that characteristics of treatment sites also matter. For example, hospital size, urban location, and teaching focus were significant predictors of epilepsy surgery receipt [38]. Psychosocial health system factors can be patient-based, providerbased, or both. Patient-based factors include health literacy, knowledge and attitudes, perceptions of/trust toward providers, or self-advocacy (patient empowerment). Examples of provider-based factors include communication skills and attitudes toward the patient, including stigma or stereotyping/prejudice. For example, one study showed that black

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patients received significantly less of recommended care and had more difficulty getting follow-up appointments compared with nonHispanic whites [53], suggesting a potential provider bias. Many studies have examined patient–provider relations, but little is known about the role of these factors in epilepsy and how they are linked to SDH. It remains unclear if disparities in care are related to poor resources, patient–provider relations, provider practices, or patient characteristics [35], but high-quality, patient-centered care is essential to improve the lives of PWE and their families, and quality-of-care studies are urgently needed [1,53]. 3.4. How do we proceed with disentangling SDH in epilepsy and eliminating epilepsy-related disparities? The national goal is to provide all PWE with access to the full range of coordinated health and community services [1]. There is a growing consensus about the role of SDH in epilepsy and resulting disparities in care and outcomes. Disparities are a complex phenomenon that requires research and action. Further robust data collection and surveillance to identify points of intervention have been recommended [1,54,55]. Among other things, measurement of SDH has been limited in epilepsy research. Moving forward, new guidelines from the IOM on social–behavioral data collection in electronic health records [56] should be considered. Another aim, per this review, could be disentangling the relationships in the SDH-epilepsy model (Fig. 1). This is a challenging task which will require multiple studies and advanced research designs/methodologies (e.g., structural equation modeling), but guidance is available from research in other areas. The resulting evidence can help to refine the model and develop strategies to address disparities. There will, no doubt, be a continuing debate about which disparities are unjust, modifiable, and socially acceptable to address. However, these social judgments can only be made with input from patients with epilepsy, families, and other stakeholders (providers and health-care administrators). Patient-centered and community-engaged approaches to disparities and care improvement are recommended. For example, it is important to educate and empower patients, especially those from disadvantaged backgrounds, and engage them more fully in treatment decisions and epilepsy self-management. In addition, cultural competence of epilepsy providers needs to be strengthened to increase the value of patient-centered care and awareness of disparities and contributing factors. Specific ideas have been offered for over a decade about how to tackle social factors and disparities in epilepsy. It is now time for more concrete steps to eliminate any pervasive disparities in epilepsy. This targeted review focuses on factors that are posited to influence epilepsy epidemiology, patient outcomes, and disparities (the far-right box in Fig. 1). A more detailed discussion of the outcomes per se is beyond the scope of this paper and is a limitation. There is an extensive literature on QOL in epilepsy and specific outcomes, such as mental health status or psychological well-being. There is a complexity to these outcomes as well; for example, mental health may shape seizure status or adherence to medications. Further work is needed to link specific epilepsy outcomes to social and psychological determinants of health and, also, to explore alternative models of the relationships between epilepsy outcomes and SDH, including any selection effects (“reverse causation”). 4. Summary The SDH conceptual framework is a broadly accepted theory of how social and psychosocial factors are linked to shape health status and health disparities. Based on this theory, it is posited that epilepsy care and outcomes are shaped by broader structural and sociocultural forces (e.g., definition of epilepsy as a medical condition, regulation of and access to care/treatments, and social stigma/discrimination). These broader effects are layered by individual-/group-level social statuses

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(SES, race/ethnicity, etc.) and mediated by material (housing and employment), behavioral/biological (AED adherence, smoking, and diet), psychosocial (self-perceptions and social support), and health system factors (access to and use of care/therapies and patient–provider relations). Population/epidemiological studies have already demonstrated young/old age, minority status, or low-SES as risk factors for epilepsy. Other research has begun to document disparities in epilepsy care/ treatment and outcomes based on social, contextual, and mediating factors. However, there are few definite findings because studies have used varying definitions and methodologies. Eliminating socially-based disparities has become a national goal in many countries. Expert panels are already recommending social interventions, including access and health system improvements and educational/media campaigns to reduce stigma. Eliminating disparities in epilepsy will require a refined evidence base, patient-centered approaches, and epilepsy-community engagement. Conflict of interest statement The author declares no conflicts of interest.

Key questions (answered) 1. What are ‘social determinants of health’ (SDH) and their relationships to epilepsy care and outcomes? The key social and structural SDH in epilepsy are as follows: socioeconomic status (SES), race/ethnicity, age, gender, and contextual factors (e.g., epilepsy-related public policy and social stigma/discrimination). For example, poverty, racial/ethnic minority status, and stigmatized contexts are associated with poorer epilepsy care and outcomes. Other social and psychosocial factors, such as living and employment situation, treatment adherence, social support, or health system factors, are considered intermediary (most proximate and mediating) SDH.

2. What are health disparities? What is known about disparities in epilepsy care and outcomes? Health/health-care disparities refer to the unequal distribution of health status/health care across groups or populations based on SES, gender, race/ethnicity, and other social factors. Research points to disparities in access to epilepsy care (e.g., surgery, AED adherence, and mental health services), knowledge and attitudes (e.g., knowledge about epilepsy and attitudes toward treatments), outcomes after medical and surgical treatment (e.g., QOL), epidemiology, and disability in employment and education. However, the evidence is limited, and some findings are inconclusive. 3. What are the mediating pathways through which SDH influence epilepsy care and outcomes? Material (living/work) conditions, behaviors (e.g., medication adherence), psychosocial factors (e.g., self-mastery and social support), and health system factors can mediate the relationships between SDH, epilepsy treatment, and outcomes. For example, lower rates of epilepsy surgery among AfricanAmericans may be linked to insurance status (public versus private), limited knowledge of epilepsy treatments, and/or distrust of providers. Examination of mediating pathways through which SDH influence epilepsy treatment and outcomes is needed to move the field forward. 4. How do we proceed with disentangling SDH in epilepsy and eliminating epilepsy-related disparities? Future work should focus on social–behavioral data collection and research, quality-of-care improvements, and public education to prevent epilepsies and to reduce stigma. Further evidence-building will require multiple studies and advanced research designs/methodologies (e.g., structural equation modeling and patient-centered and epilepsycommunity-engaged approaches). Intersectoral, multilevel collaborations are needed to achieve equity in epilepsy care and outcomes.

Appendix. The social determinants of health (SDH) conceptual framework1

1 Reproduced with the permission of the publisher from Solar, O and Irwin, A (eds). A conceptual framework for action on the social determinants of health: social determinants of health discussion paper 2 (Debates, Policy & Practice, Case Studies), Geneva: World Health Organization, 2010. Available online at: http://www.who.int/sdhconference/resources/ ConceptualframeworkforactiononSDH_eng.pdf.

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