This array of studies provides ample evidence that minorities with epilepsy may be receiving lower levels of care than the nonminority white population in North America. This is a concern for advocates and policy makers seeking to eliminate inequalities in national health systems and for those interested in improving health in high-risk populations. None of these studies have attempted to explain the source of racial and ethnic disparities in care, however. Some of the key causal questions that arise include: are observed disparities due to overt or institutional discrimination or bias in health care systems design and availability? Do they result from cultural misunderstandings on the part of health care providers or patients? Or do minority patients receive different levels of care based on the settings where they seek care?
Although there is a suggestion that African-Americans have higher rates of hospitalizations and ER visits, and lower rates of epilepsy surgery, because insurance status and low SES also had an association in some of the studies, it is not clear whether racial/ethnic factors causally relate to rates of care. In Canada, Aboriginals with epilepsy were less likely to see a neurologist and more likely to visit the ER, a finding which could not be explained by lower SES or rural residence. Other disparities in population-based studies include more ER and fewer counseling visits in people living in less densely populated and remote areas, and more barriers to care in those living in urban areas. Women and children are more likely to see a neurologist than men and adults. In two studies with different methods, cultures, and populations, poor compliance with AEDs was associated with external factors such as lower income, insufficient insurance, and poor relationship with treating clinicians; as well as with internal factors such as not having regular responsibilities. Clinical, demographic, and cognitive factors were not associated with compliance with medication. Disparities in mental health care have been documented in people with epilepsy. Lower rates of mental health treatment in children with epilepsy are associated with older age, lower parental education, higher verbal IQ, and AED polytherapy.
Due to the absence of comparative studies, it is impossible to know how much and in what dimensions knowledge of or attitudes toward epilepsy differ from feelings concerning other chronic disorders. Community attitudes appear to have improved over time, and education can be a positive factor. Specific ethnocultural beliefs would need to be addressed. The lack of knowledge of PWE themselves is of concern.
There also appear to be discrepancies between different studies in term of employment status in patients with epilepsy when compared with those without it. However, there appears to be a lower educational level attained in those with epilepsy compared to the general population. More studies are needed to clarify these discrepancies.
Furthermore, there is little research on the role of SES, gender, race/ethnicity, age, education, and comorbidities in relation to outcomes following medical treatment for people with epilepsy. The published data are not sufficient to reach conclusions regarding the relationships between these factors.
Finally, there is scarce information about possible disparities following the surgical treatment of epilepsy. More studies, particularly with a large sample size, are needed.
Because of the limited number of racial and ethnic groups studied, small sample sizes, the limited number of other patient factors examined, the limited number of provider sites examined, and the large potential for confounding among the factors, more studies are needed. Care is required in the selection of diverse study populations across multiple institutional settings to gain a deeper understanding of the wide range of possible patient-related and provider-related factors involved. In order to isolate the underlying factors that may be causing disparities, studies must be carefully designed and attention given to a broad set of measures in data collection and analysis. Future research should address the reasons for disparities and inform programs and policies to reduce and/or eliminate disparities.
In the United States where health insurance coverage is not universal, there is ample evidence of disparities in epilepsy care associated with race/ethnicity and SES. Disparities are still found even in a system in which there is coexistence of private and public care, as in Canada, where health care delivery is based on the premise of universality, but where reports in other areas of medicine have found that important sex and gender disparities are present (Fowler et al., 2007
). Those raise the question on how equitable is the Canadian Health Care system (Baxter, 2007
), something that is still largely unknown for epilepsy.
In conclusion, studies on disparities in epilepsy care are scarce. More studies are needed involving large and selected populations of patients. Comparisons are needed between rural and urban, as well as from different geographic areas. No studies from the English-speaking Caribbean exist, and few describe native communities in North America.