For many years, some women with epilepsy were discouraged from becoming pregnant. But it is now clear that more than 90 percent of pregnancies in women with epilepsy have a good outcome (1). Many physicians are not aware of this statistic, nor are they up to date on the best medication choices for women with epilepsy considering pregnancy or already pregnant (2). In addition, 50 percent of pregnancies are unwanted or unplanned making counseling necessary for all women with epilepsy of childbearing age. For this reason it is critical that healthcare professionals who treat women with epilepsy are provided the best available information to assist them in pre-conception counseling and treatment during and following pregnancy.

A clinical dilemma

The risk of fetal malformation in a healthy population in the United States is 2 to 3 percent. For women with epilepsy taking an antiepileptic drug (AED), the risk is increased twofold (3). The increased risk is due both to the seizures and to the drugs that treat seizures. Thus, women with epilepsy present a clinical dilemma. It is important to be sure that seizures are well controlled since seizures themselves can be harmful to both mother and developing fetus (4). At the same time, it is crucial to choose AEDs with a minimal potential for teratogenicity. The goal is for the patient to be seizure free on monotherapy or the best possible polytherapy while choosing medication(s) least likely to have an impact on the fetus.

Pregnancy registries

In the past decade, a number of independent as well as pharmaceutical company-sponsored pregnancy registries for women with epilepsy have been established. The registries provide prospective data that are needed to understand what risks to the fetus may be associated with AED exposure. The registries are able to compile more information regarding women with epilepsy and pregnancy outcomes than are most clinical studies, which are limited by size and scope.

The potential for teratogenicity related to AEDs has been known for many years, but it is only recently that sufficient prospective data have become available from these pregnancy registries to allow establishment of preliminary conclusions.

The registries are beginning to quantify the relative risks of both the "new" and "old" AEDs. Even so, issues such as developmental delays that may be related to AED treatment are not currently a part of registry reporting (5,6). Physicians are in urgent need of clear, factual information to help them recommend the best treatment for their pregnant and about-to-be pregnant patients.

The goal of the HOPE forum

The Health Outcomes in Epilepsy and Pregnancy (HOPE) forum was established with support from the Epilepsy Therapy Project (ETDP). There is a growing body of information concerning pregnancy for women with epilepsy. Some of this information comes from clinical studies, some from surveys, some from case reports, and now a great deal from the pregnancy registries.

Nevertheless, there are many areas of concern to women with epilepsy and their healthcare professionals that require further study. The purpose of the HOPE forum is to evaluate the state of current knowledge regarding the management of women with epilepsy prior to and during pregnancy and to make a critical assessment of this information. The goal is to highlight the major information gaps and to develop a consensus statement based on current data that outlines issues that require further study and methodological considerations that will improve further research. The hope is that researchers will use this information in designing new studies.

This HOPE forum effort should help to meet the current needs for evidence-based data. In addition, description of the ideal registry may help to refine registry criteria for the future, allowing for more robust information and the development of guidelines for physicians.

(We will be presenting a full series of articles on the professional pages and provide links for all those interested in this topic. / The Editors)

References

1. Penovich PE. The effects of epilepsy and its treatment on sexual and reproductive function. Epilepsia 2000;41(Suppl 2):S53-S61.
2. Fairgrieve SD, Jackson M, Jonas P et al. Population-based, prospective study of the care of women with epilepsy in pregnancy. Br Med J 2000;321:674-675.
3. Derdiarian AT, El-Sayed YY. Risks of birth defects in children born to mothers with epilepsy. In Women with Epilepsy: A Handbook of Health and Treatment Issues. Morrell MJ and Flynn K, eds. Cambridge University Press, Cambridge, UK, 2003, pp. 215-221.
4. Pennell PB. Pregnancy in women who have epilepsy. Neurol Clin 2004;22(4):799-820.
5. Tomson T, Perucca E, Battino D. Navigating toward fetal and maternal health: The challenge of treating epilepsy in pregnancy. Epilepsia 2004;45(10):1171-1175.
6. Vinten J, Adab N, Kini U, Gorry J, Gregg J, Baker GA. Neuropsychological effects of exposure to anticonvulsant medication in utero. Neurology 2008;64:949-953.

Edited by Steven C. Schachter, MD