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SEATTLE, WA — When it comes to the treatment of women with epilepsy, health care professionals, including neurologists, nurses, and other physicians, have a lot to learn. So suggests a new survey of health care professionals at a major tertiary care center.

The survey results, which were discussed here at the Annual Meeting of the American Epilepsy Society, revealed a striking lack of knowledge about managing certain areas of women's health – especially whether women can breastfeed or take birth control pills while taking antiepilepsy drugs (AEDs), and whether pregnancy is possible and safe.

Among the 68 respondents, neurologists seemed to be most knowledgeable – scoring 61.4 percent – while nurses scored 30.2 percent and social workers 28.3 percent.

Lucretia Long, RN, MS, CNP, Clinical Assistant Professor of Neurology at Ohio State University in Columbus, designed two different surveys – one for patients to assess what they had been told by health care professionals and the other for health care professionals to evaluate their knowledge base. Ms. Long said she and her colleagues developed the surveys after seeing the effects of misinformation firsthand.

“Probably 90 percent of what I do is direct patient care,” Ms. Long explained. “One woman with epilepsy told me her previous neurologist told her that because she has epilepsy she shouldn't have children. This patient had been seizure-free for six or seven years, and was a law student. I couldn't believe the misinformation.”


The survey was sent to nurses, neurologists, obstetrician-gynecologists, medical students, social workers, and internists. Seventy percent of those surveyed did not know that women taking AEDs could breastfeed, while 40 percent were unaware of the effects of enzyme-inducing AEDs on birth control pills. Most strikingly, only 10 percent of the respondents knew of the association between valproic acid and polycystic ovaries; 21 percent knew about the hemorrhagic disorder associated with enzyme-inducing AEDs, and 40 percent knew about the possible correlation of endogenous hormones and seizures.


“This study supports the need to improve the education of those treating and evaluating women with epilepsy,” Ms. Long said. “Although neurologists obtained the highest percent correct, they did not respond accurately to 40 percent of the questions.”


Ms. Lucretia Long

“The lack of awareness in nurses and social workers is also important because they play a pivotal role in patient education,” she continued. “Improving the knowledge of health care professionals in general may enhance the awareness of women with epilepsy, leading to improved outcomes. We know that health care professionals are interested in learning more, but the biggest question is: How do we implement programs that are relevant and time efficient? The interest is there.”


The survey findings were not all that surprising to Alison Pack, MD, Assistant Professor of Clinical Neurology at Columbia University, who devotes a large part of her practice to women with epilepsy. She said that neurologists need to develop more expertise when it comes to women's health.

“It is important for neurologists to ask the women they treat about their menstrual history. Answers to these few simple questions – ‘Are you having regular cycles?’ or ‘What is the interval between the cycles?’ – are markers for women who may be at risk for having anovulatory cycles, which can be associated with infertility, abnormal lipids, and increased risk for malignancies.

“Many neurologists are uncomfortable with the treatment of epilepsy in pregnancy,” she said. “There are still physicians out there who believe that phenobarbital is the drug of choice, which is not true.”

Dr. Pack noted that physicians often advise women inappropriately to come off their AEDs, putting them at risk of seizures. Although the risk for teratogenic effects is certainly increased in women taking AEDs, she said, it is not nearly as high as what some neurologists believe.

“The risk ranges from 4 to 8 percent, depending on whether it is a major or minor effect. Minor effects, such as facial or digital abnormalities are more common, but can be difficult to identify and are often outgrown. Neurologists also need to educate their patients on the importance of taking folic acid, and on the use of ultrasound and Vitamin K during pregnancy.”

Dr. Pack recommended that neurologists obtain more information from the Epilepsy Foundation's Women's Health Initiative, which, she noted, is a very good resource.