2020 Epilepsy Research Benchmarks

Research in Health Disparities trending idea

There is a huge gap in this research area that pertains to Hispanic/Latinx patients with TLE and other epilepsy syndromes. Specifically, very little is known of whether Spanish-speaking patients with epilepsy have similar cognitive trajectories and post-operative cognitive outcome to other racial/ethnic groups. One of the limitations of conducting neuropsychological research with Spanish-speaking patients is the lack of consensus regarding the neuropsychological tests that should be used for epilepsy pre-surgical workup or to evaluate long-term cognitive outcomes. The NINDS common data elements does not include recommendations for neuropsychological testing in Spanish. Given that Hispanic patients with epilepsy represent an underrepresented group in epilepsy research and the fastest growing minority group in the U.S., this gap in research and clinical care should be addressed in order to improve epilepsy-related outcomes in Hispanic patients. I propose to develop a task force addressing multicultural issues associated with neuropsychological and psychological assessment in order to address the disparities in epilepsy treatment and outcome. Up to date, only two studies (Barr et al. 2009, Smith, et al., 2020) have validated Spanish neuropsychological assessment in Spanish-speaking patients with epilepsy. A recent review in Neurology (Nathan & Gutierrez, 2018), highlighted the disparities in epilepsy surgery among Hispanic and African American patients. The authors emphasize that Hispanic patients have less comprehensive health insurance coverage, receive less AEDs, have higher depression scores, and receive less antidepressant medications. They also report that limited English proficiency leads to significantly longer times to anterior temporal lobectomy (ATL) surgery even when all patients underwent the full presurgical evaluation and also leads to patients with mesial temporal sclerosis to be significantly less likely to receive an ATL. Research informs clinical care and given the lack of representation of Hispanic and specifically Spanish-speaking Hispanic in epilepsy research, there are disparities in clinical care. Validating neuropsychological assessment in Spanish-speaking patients and understanding the impact of epilepsy on cognitive and psychological outcomes should be a priority for the 2021 Benchmark.

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Idea No. 73