Investigating the reproductive health needs of women and girls with epilepsy

Epilepsy, a poorly understood and often stigmatized condition, is the most common neurological disorder in females of reproductive age, affecting more than one million women and girls in the US. For this population, neurological and reproductive health are closely linked. In part this is because medications used to treat epilepsy can reduce the efficacy of some hormonal contraceptive methods and increase the risk of fetal malformations if taken during pregnancy. At the same time, hormonal shifts brought about by menstrual cycles, hormonal contraceptive use, and pregnancy can influence seizure frequency, though it is hard to predict in what direction.

In 2010, Ibis embarked on an innovative research project to find out how women with epilepsy make contraceptive and pregnancy decisions and what health systems and policy solutions are needed to better support their reproductive decision-making needs. This study includes: 1) Evaluation of family planning guidelines for women with epilepsy; 2) Content analysis of online forums used by women with epilepsy, and 3) In-depth interviews with women with epilepsy about their reproductive health decision-making and needs.

As a follow up study, in 2012, we launched an investigation of the reproductive decision-making processes and needs of female teens (aged 13-19) with epilepsy. This study includes: 1) An online survey with female teens with epilepsy, and 2) Online focus group discussions with female teens with epilepsy.

Finding that women and girls with epilepsy often lack the information, support, and resource to make informed reproductive health decisions, we created a contraceptive decision aid for adult women with epilepsy and an online resource to support the sexual and reproductive health needs of female teens with epilepsy