The unmet reproductive health needs of women with epilepsy: A qualitative exploration of family planning decision making
Awarded 2010
Small Research Grants
Amanda Dennis, MBE
Ibis Reproductive Health

Background: Epilepsy affects an estimated 800,000 women aged 15-44 in the US, making it the most common neurological disorder in women of reproductive age. Informed family planning decision making is a critical component of this population’s overall health and quality of life because some medications used to treat epilepsy can reduce the efficacy of popular hormonal contraceptives and increase the risk of congenital malformations if taken during pregnancy. Additionally, hormonal changes brought about by pregnancy or contraceptive use can influence seizure activity in unpredictable ways. Aims: We aimed to investigate the unique issues women with epilepsy encounter when making family planning decisions, as well as the clinical context of those decisions through analysis of: 1) all current clinical guidelines for managing the family planning needs of women with epilepsy, 2) one year of posts on all online forums utilized by women with epilepsy in the US to discuss family planning issues, and 3) thirty semi-structured in-depth telephone interviews with women with epilepsy of reproductive age. Findings: Women with epilepsy face challenges making and implementing informed family planning decisions due to a number of factors such as the continued stigmatization of the disorder, segregation of neurological and reproductive health care in the health system, lacking clinical guidelines for managing epilepsy in women of reproductive age, and barriers enrolling in and utilizing insurance to obtain health care services and products. These challenges can result in a number of poor health outcomes including the use of epilepsy medications or contraceptives that lead to poor seizure control, undesired reproductive health outcomes such as unintended pregnancy or an inability to get pregnant when pregnancy is desired, and feelings of conflict or regret about family planning decisions. Conclusions: Findings suggest there is a continued and significant need to support women with epilepsy in making and implementing desired family planning decisions, and that intervention is necessary to ensure they experience optimal neurological and reproductive health outcomes.