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Survey: Women with Epilepsy May Not Be Getting Adequate Health Care

Women with epilepsy may not be getting adequate healthcare.

A new survey by the Epilepsy Foundation, reported in the November 2000 issue of the Journal of Women's Health and Gender-based Medicine, documents a low level of knowledge and a high degree of uncertainty among health care professionals about best practices in caring for women with the disorder. It is the first national assessment of knowledge and awareness of health issues for women with epilepsy.

The survey, Health Issues for Women with Epilepsy: A Descriptive Survey to Assess Knowledge and Awareness Among Health Care Providers, is part of the Epilepsy Foundation's Women and Epilepsy Initiative, which is funded through a grant from Glaxo Wellcome. It was conducted to see if health care professionals knew about practice parameters on women's care, issued by the American Academy of Neurology and the American College of Obstetricians and Gynecologists. The study sought to find out whether women with epilepsy are getting medically accurate information, and to help guide future educational campaigns targeted to healthcare professionals.

How the Survey was Done

The Epilepsy Foundation, assisted by the Schaefer Center for Public Policy at the University of Baltimore, surveyed 3,535 health care professionals between March and November 1998. The survey included 15 multiple choice questions about hormone effects on seizures, reproductive disorders, interactions between antiepileptic medications and oral contraceptive pills, pregnancy risks and effects of the medications on unborn children, sexual functioning, and risk of osteoporosis. Only five percent of respondents answered eleven or more of the questions correctly.

Martha J. Morrell, M.D., chair of the Epilepsy Foundation's Board of Directors and lead author of the report, said, "The survey confirms what women with epilepsy themselves have been saying. It shows that women with the disorder are not receiving adequate information and that care practices may not meet existing recommendations for managing epilepsy in women."

Who Responded to the Questions

Respondents to the survey included physicians (47 percent), registered nurses (19 percent), nurse practitioners (10 percent), as well as counselors, psychotherapists, researchers, medical educators and others (total 24 percent). More than four in 10 of all respondents (40 percent) answered that they were "unsure" to 11 out of the 15 survey questions.

Over the past few years, new information has been developed linking seizure susceptibility and hormone levels, sexual dysfunction and epilepsy, and the relationship between seizure medication and birth defects.

While most of the respondents knew of the relationship between seizures and hormones, they were less sure about the other issues.

"Very few knew about menstrual cycle related seizures, or the effects of estrogen and progesterone on the seizure threshold," the report stated. "Only 11 percent knew about epilepsy-related sexual dysfunction and there was little knowledge of the specific symptoms of dysfunction. Knowledge about pregnancy was somewhat better. However, 50 percent of respondents were 'unsure' of the frequency of birth defects. Taken together, the item analysis indicates a fairly low level of specific knowledge and a high level of uncertainty about epilepsy related issues."

As might be expected, health care professionals who see the largest number of epilepsy patients were more likely to have correct answers to the survey. By specialty, neurologists provided the highest number of correct responses, followed (in descending order) by endocrinologists, obstetricians/gynecologists, internal medicine physicians, family practice physicians, and pediatricians.

One of the goals of the Women and Epilepsy Initiative is to educate health care professionals about the health issues that concern women who have epilepsy.

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