My Epilepsy Story (MES) was founded based off inequities of research into epilepsy and women’s health, and the consequences of being in an under researched patient population. We see a continued need to address the healthcare disparities within the women with epilepsy community. Disparities in the quality of healthcare are known to persist in rural and urban communities, each with their own unique challenges. For example, in rural communities there is limited access to a neurologist or they may need to travel several hours to a near city for care where they may not even have an epileptologist available. Many rural areas have poverty has a prevalent issue, which further limits ability to access a neurologist. In urban centers, poverty and financial constraints limit healthcare options and often lead to emergency care at hospitals at which with rotating physicians leads to inconsistent care. This lack of stability for the patient devalues their quality of care and prevents a bond of trust from forming between patient and physician. Additionally, many patients may feel unheard or that their opinions are undervalued in addition to potential financial limitations.
To bridge the gap, we are continuing our efforts to reduce healthcare disparities in women with epilepsy via grants, funding, and research awards. At the 2019 American Epilepsy Society Meeting, the Kimford J. Meador Research in Women with Epilepsy Award was earned by Dr. Deepti Zuthshi for her work monitoring a predominantly African American population of pregnant women with epilepsy in Detroit. A summary of her research is below.
Pregnancy Outcomes in African American Women with Epilepsy
Authors: Deepti Zutshi, M.D. and Meghana Srinivas, M.D.
Summary: Outcomes in women with epilepsy and pregnancy are based upon national and international registries which have a higher predominance of Caucasian or Asian heritage ethnicities. There is a significantly less amount of information on pregnancy and fetal outcomes in African American (AA) women with epilepsy (WWE). Dr. Zutshi’s project reviewed the pregnancy demographics, complications and outcomes in a highly predominant African American population of women with epilepsy based in specialty clinic in Detroit, MI, USA.
Our study had a total of 98 women and 104 pregnancies. The average age of the mother at time of pregnancy was 22 years (15-43 years). African Americans comprised 77.5% of the group. In our study we found that African Americans WWE, the average age of women at time of pregnancy was 26.2 years (15-43 year). The average duration of epilepsy was 11 years. One major finding was that eighty-three percent were unplanned pregnancies in AA versus 63% in other ethnicity groups (p =0.0155, z-score -2.158). Sixty-three percent of AA WWE did not take preconception folic acid. Of pregnancies in AA women, 62% had at least one seizure one year prior to pregnancy. Of these, 76% had at least one seizure during pregnancy, labor and delivery or in the 6 weeks post-partum, compared to 92% in Caucasians and others. A total of 40 pregnancies in AA WWE had seizures during pregnancy and 36 also had seizures in the year prior to pregnancy. In the AA women who had seizures during pregnancy, fetal complications included 2 small for gestational age infants, 4 premature deliveries and 1 intrauterine growth retardation (IUGR).
This study highlights the importance of close monitoring of WWE during and after pregnancy. African American women tend to have more complicated pregnancies in urban geographical locations. WWE face further complications related to medication use and seizure burden. Certain factors such as unplanned pregnancy, which was statistically significant in our group, may play an important factor in more complicated outcomes. Further larger prospective databases dedicated to these population groups are needed to guide planning and monitoring to achieve favorable maternal and fetal outcomes.