Health disparities likely exist in youth epilepsy but few studies have focused on these disparities.
Children and youth with epilepsy (CYE) likely have disparities that are not being focused on in studies of the disorder in the population, according to an article in Clinical Psychology in Medical Settings. This lack of focus could lead to disparities being underrecognized and underemphasized.
There are approximately 750,000 children up to age 17 years who have epilepsy in the United States. The researchers found that although studies have demonstrated some health disparities and health inequities in CYE and their families, such as an increased risk of neurodevelopmental or psychological disorders, increased risk of death, and more CYE living in poverty, there have been no peer-reviewed assessment of these disparities. The goal of this review was to provide additional information that would improve equity and outcomes in CYE.
A request for information (RFI) was formed, with key points the authors wanted to address including known disparities and inequities in pediatric epilepsy, determinants that would explain these disparities or inequities, interventions that address these disparities, and potential approaches for addressing neurological disparities or inequities. A literature search on the relationship between disparity factors and outcomes was done through PubMed and Google Scholar and categorized into prevalence, access to care, management, and outcomes.
The researchers found that only 7 pediatric and 34 adult/mixed adult and pediatric studies focused on health disparities, with most results coming from studies that had other aims. Race and ethnicity were the most consistently documented disparities. The literature found socioeconomic status (SES) had an effect on poor health outcomes and health insurance was a detriment to accessing care. Sociocultural factors were also predictors of outcomes in epilepsy.
The researchers concluded from the RFI that there were very few studies that focused on socioeconomic health disparities in CYE, with no studies examining racial disparities in long-term outcomes and inequities having little information in relation to gender and English proficiency among other things.
The researchers also performed a scoping review, which makes an assessment of all existing literature without evaluating for quality of evidence. The scoping review aimed to describe the question, identify the relevant studies, select papers based on the inclusion criteria, chart data from studies, and summarize the results.
The researchers defined a health disparity as “a particular type of health difference that is closely linked with social, economic, and/or environmental disadvantage.” Social determinants of health (SDOH) were defined as environmental conditions that affect health, functioning, and quality of life outcomes and risks; these were categrorized as race/ethnicity, sex/sexual orientation/gender identity, regional/geographic residence, caregiver education, SES, insurance type, and English fluency.
Search terms were devised and used to search databases. PubMed, Web of Science, CINAHL, Cochrane, PsycINFO, and Dissertations & Theses Global were used for the search with TheClinicalTrials.gov used to identify ongoing studies. GoogleScholar was also used for several focused searches, limited to studies published in English and conducted in the United States.
The researchers found few articles that directly addressed health disparities in pediatric epilepsy. SDH were often reported as sociodemographic information but were not further evaluated. Links between disparities and health-related outcomes were reported but system-level influences were not acknowledged.
There were some challenges for this study, including difficulty in determining search terms, an increase in anticipated time, and an increase in false positives due to searching more broadly to ensure all relevant studies were included in the review.
The researchers concluded that few studies have focused on disparities in CYE, with disparities going underrecognized and underemphasized in the treatment of CYE.
Wagner J, Bhatia S, Marquis BO, et al. Health disparities in pediatric epilepsy: methods and lessons learned. J Clin Psychol Med Settings. 2023;30(2):251-260. doi:10.1007/s10880-022-09898-1