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Women and Epilepsy Initiative Survey

As part of its National Campaign for Women's Health, the Epilepsy Foundation developed an information packet containing fact sheets written especially for women with epilepsy and their health care providers. The goal of these materials was to educate and inform consumers, their families and health providers about the unique concerns of women with epilepsy, to improve communication between the patient and the provider, and to encourage women to take a more active role in their own health care.

In order to evaluate the impact of the information packet, the Epilepsy Foundation worked with the Schaefer Center for Public Policy at the University of Baltimore to conduct a survey of consumers and healthcare providers who had received the packet.

Following are the results of the consumers who responded:

• The Answer Place and Friends of the Initiative databases were used for this survey. 1,515 consumers who had received the packet as recently as three months to over two years prior were surveyed. The return rate was 25 percent.
  
  
• A majority of respondents were young to middle-aged. Well over half were in child-bearing years.
  
  
• Fifty-two percent reported that they have children, either living at home or grown children. Another 22 percent indicated that they are either currently pregnant or are planning to have children.
  
  
• As for education, 94 percent of those surveyed were high school graduates; 70 percent had pursued more advanced degrees.
  
  
• Sixty-five percent indicated that they were satisfied with levels of seizure control.
  
  
• Nearly half (49 percent) indicated they were seeing a neurologist for seizure management; 24 percent were seeing an epileptologist; 3 percent a neuroendocrinologist.
  
  
• Three-quarters (73 percent) recalled seeing the original mailing.
  
  
• About half (49 percent) considered themselves to be just "informed" about epilepsy and women's health prior to reading the information sheets. A third (34 percent) of those surveyed said they were "not well informed" before receiving the information.
  
  
• Sixty-three percent of survey respondents said the information sheets were "very easy to understand" and 36 percent rated the material as "easy to understand."
  
  
• The sheets that most consumers found applicable to them were "Hormones and Epilepsy" (77 percent); "Concerns about Medications" (72 percent); and "Sexual Relationships" (51 percent).
  
  
• The sheets that made the most significant improvement in consumer understanding were "Menopause and Epilepsy" (87 percent); "Sexual Relationships" (86 percent); "Hormones and Epilepsy" (84 percent); and "Parenting" (79 percent).
  
  
• The sheets that impacted consumer behavior the most were "Parenting Concerns" and "Sexual Relationships." Fifty-three percent of survey respondents had followed or had definite plans to implement the parenting sheet's stress, care and safety guidelines. Forty-six percent of respondents had discussed or had definite plans to discuss the information sheet on sexuality with their spouse or partner. Forty percent of respondents were thinking about changing health care providers.
  
  
• Twenty-seven percent of consumers who responded to the survey had shared the packet with their health care provider. Four of five had received positive responses.

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