COLUMBUS, Ohio – It was a patient’s tearful story that convinced Lucretia Long to try to raise awareness about the health issues surrounding women with epilepsy.
“I had a new patient diagnosed with epilepsy who had been seizure-free for years who told me she could never become pregnant, when in fact we know that 95 percent of epilepsy patients can have successful pregnancies,” recalled Long, an epilepsy nurse practitioner at The Ohio State University Medical Center. “That patient now has two healthy children.”
It turns out that Long’s patient was not alone in her misconceptions about the perceived limitations of her condition. And, Long and colleagues have found, the knowledge gaps among women with epilepsy might be due in part to a lack of awareness about their specific health concerns among primary care practitioners.
Long led a study surveying 202 primary care physicians attending an annual conference to gauge their knowledge of women’s issues and epilepsy. The researchers reported that few of the physicians surveyed understood that hormonal fluctuations during a woman’s menstrual cycle can affect seizure frequency, and most were unfamiliar with the strong association between epilepsy and increased incidence of female sexual dysfunction. Though at least three-fourths of those surveyed knew that women with epilepsy can have healthy pregnancies, fewer than half knew that women taking anti-seizure medications could safely breastfeed their babies.
The results were published in a recent issue of the journal Epilepsy & Behavior.
“This is important because we know women with epilepsy often seek primary care practitioners, at least initially, for evaluation and treatment,” said Long, also a clinical assistant professor in OSU’s department of neurology. “I believe primary care practitioners have such a broad range of patients with such a variety of diagnoses that many just haven’t had the opportunity to become aware of issues specific to women with epilepsy.
“The good news is the overwhelming majority of those surveyed were very interested in learning more about epilepsy, so we are hopeful that as a result of this survey, we can develop educational interventions to facilitate an increase in knowledge.”
Epilepsy is a brain disorder in which clusters of nerve cells, or neurons, in the brain sometimes signal abnormally, causing strange sensations, emotions and behavior or sometimes convulsions, muscle spasms and loss of consciousness. More than 2 million people in the United States have experienced an unprovoked seizure or been diagnosed with epilepsy. For about 70 percent of those diagnosed with epilepsy, seizures can be controlled with modern medicines and surgical techniques.
Other findings among the health care providers surveyed included:
* One in four didn’t understand that a pregnant woman with epilepsy should continue taking antiepileptic drugs throughout pregnancy.
* Ninety-two percent were aware of the value of folic acid supplementation during pregnancy, but only 68 percent recognized the need for vitamin K supplementation during the last month of pregnancy to reduce the risk of neonatal hemorrhagic disorder associated with certain anticonvulsants.
* Only about 70 percent knew that certain antiepileptic drugs might interfere with the effectiveness of oral contraceptives or increase the risk of diseases associated with bone weakness.
Long and colleagues noted that the ideal health care practices for women with epilepsy would include ensuring that oral contraception for women on antiepileptic drugs have adequate amounts of estrogen to boost their effectiveness and advising women on antiepileptic drugs to take vitamin D and calcium supplements to protect their bone health.
Long recommended the following steps for women with epilepsy who wish to have children: Pursue prepregnancy counseling; plan for folic acid supplementation before pregnancy; consider an attempt to reduce medication before pregnancy if possible; and assess seizure medication drug levels every three months during pregnancy to see if medication doses should be adjusted.
“We always think it’s a good idea for at least one evaluation with a neurologist or epilepsy specialist once you become pregnant to establish a plan of care,” Long said.
Long noted that epilepsy in general does not receive the visibility it warrants. In a previous study assessing epilepsy patients’ own knowledge of their disorder, Long and colleagues found that in general, patients with epilepsy are not knowledgeable about their disorder, regardless of age, educational background or number of years with epilepsy.
“Education is obviously needed for the patient population, as well,” Long said. “Our job as health care providers is to give patients information they need to live with this condition every day.”# # #
Medical Center Communications