Epilepsy and women’s health issues: Unmet needs—Survey resultsfrom women with epilepsy

Blanca Vazquez a,*, Patricia Gibson b, Robert Kustra c

a New York University Medical Center Comprehensive Epilepsy Center, 403 East 34th Street, New York, NY 10016-4998, USAb Wake Forest University Comprehensive Epilepsy Center Epilepsy Information Service, Winston–Salem, NC, USA

c GlaxoSmithKline Neurosciences Clinical Research, Research Triangle Park, NC, USA

Received 1 September 2006; accepted 23 September 2006Available online 7 November 2006

Abstract

The impact of epilepsy on women involves unique issues related to hormone effects on seizure control, seizure and drug effects onreproductive health, birth control options, and bone mineral density. Patient–physician communication on these critical issues maynot be adequate. This survey evaluated women’s perceptions and misconceptions of the issues they face with the diagnosis of epilepsyand the use of antiepileptic drugs (AEDs). The goals of the survey were to identify the level of current patient–physician dialogue onthese issues and to determine whether women perceived a need for more information from their physicians. Across the responders,the greatest concerns related to AED therapy were weight gain (63%) and bone health (64%). Among women less than 35 years old,69% were concerned about pregnancy. Women with epilepsy who access online health information are not adequately educated by theirphysicians about the impact of epilepsy and AED therapy.� 2006 Elsevier Inc. All rights reserved.

Keywords: Epilepsy; Patient knowledge; Women’s health; Antiepileptic drugs; Online survey

1. Introduction

More than 1,000,000 females in the United States haveepilepsy, a disorder that affects all aspects of their lives,including cognitive function, education, employment, fam-ily and other personal relationships, and overall sense ofhealth and well-being [1–4]. Women with epilepsy(WWE) face particular problems such as hormone effectson seizure control and potential effects of seizures and anti-epileptic drugs (AEDs) on reproductive health, birth con-trol options, and bone health [5–11]. The effect ofhormones on seizure frequency is exemplified by catameni-al epilepsy (an increased vulnerability to seizures justbefore or during menstruation), which may occur in asmany as 50% of WWE. In addition, greater seizure fre-quency is associated with earlier age at menopause, a cor-

relation that suggests that seizures may alterneuroendocrine function [5,8].

The increased risk of these health problems in WWE hasbeen attributed both to the disease process and to adverseeffects of AED therapy. Women with epilepsy have higher-than-average rates of sexual dysfunction and reproductiveendocrine disorders (i.e., menstrual irregularity, infertility,and polycystic ovary syndrome (PCOS)), and negativebone health measures [5]. The results of a recent study sug-gest that an effect of some enzyme-inducing AEDs on themetabolism of sex steroid hormones may be at least partlyresponsible [7]. Sexual dysfunction and decreased sexualarousal were more common in a group of 57 WWE thanin a control group of 17 women without epilepsy, andalthough neither difference was statistically significantoverall, both were significant (P < 0.05) in the subgroupof WWE who were taking an enzyme-inducing AED(phenytoin, phenobarbital, or carbamazepine; n = 33) [7].However, a non-enzyme-inducing AED, valproate, has

1525-5050/$ - see front matter � 2006 Elsevier Inc. All rights reserved.

doi:10.1016/j.yebeh.2006.09.013

* Corresponding author.E-mail address: blancavs@netscape.net (B. Vazquez).

www.elsevier.com/locate/yebeh

Epilepsy & Behavior 10 (2007) 163–169

been linked to the development of PCOS. In a group ofyoung WWE who were treated with one AED, PCOSwas significantly more common (P = 0.002) among the 54who were taking valproate than among the 51 taking car-bamazepine (n = 21) or lamotrigine (n = 30) [6].

In addition to reproductive health, managementdecisions for WWE must also involve the impact of thedisease and its treatment on bone mineral density, althoughthis is not a problem that affects women only [10]. Defini-tive data on the comparative effects of individual AEDsare not available, and certain enzyme-inducing AEDs andthe noninducer valproate have been implicated. Phenytoin,carbamazepine, and valproate, but not lamotrigine, wereshown in one study of WWE to decrease serum calciumconcentrations [11]. The women taking phenytoin alsohad significantly higher levels of bone-specific alkalinephosphatase, a marker of bone turnover [11].

To cope with a disease such as epilepsy that can affecttheir way of life and well-being in manifold ways, patientsmust be armed with information and understanding. Thedemonstrated benefits of epilepsy education programsinclude improvements not only in patients’ understandingand outlook but in coping and self-care abilities, treat-ment compliance, and even seizure frequency [12,13].Studies suggest that women’s knowledge of their distinc-tive epilepsy-related concerns is poor and that healthcare professionals do not inform WWE sufficientlyabout these issues [14,15]. Recent survey-based studiessuggest that health care professionals’ own knowledge ofspecial issues in the care of WWE is often inadequate[16,17].

Results of a recent online survey of WWE are discussedin this article. The survey was designed to evaluate thewomen’s perceptions and misconceptions of the uniqueissues they face regarding epilepsy and its management,including AED therapy, throughout adulthood. Inaddition, the survey sought to identify the level of cur-rent patient–physician dialogue to determine whetherwomen felt a need for more information from their physi-cians—or better education of physicians—concerning theseissues.

2. Methods

The 19-question online survey form (Appendix A) was distributedfrom May 5 to June 6, 2005, through an e-mail list of visitors to theHealthology web site who had chosen an option of receiving epilepsyinformation. The survey was made available from May 5 to June 6,2005, and could also be completed by visitors to the Healthology homepage and the epilepsy content page of this web site, where a banner adver-tised the survey. Only responders who identified themselves as female,18 years or older, and currently taking one or more AEDs for the treat-ment of epilepsy were allowed to participate. The women’s health issuesaddressed by the survey were birth control, pregnancy, menopause, bonehealth, and sexual function. Descriptive statistics were used, and standardt tests (95% confidence level) were performed for comparisons betweenresponses to specific questions and by age group. Differences betweengroups where the 95% confidence intervals did not overlap were consid-ered significant.

3. Results

3.1. Population

Of the 440 women who responded to the survey, 25%were 18 to 34 years old and 32% were 35 to 44 years old,29% were 45 to 54 years old, and 14% were 55 years or older.Thirty-eight percent of the women had experienced morethan six seizures in the previous 12 months, and 29% hadexperienced fewer than six seizures during the previous 12months. The remaining 33% of respondents reported beingfree of seizures for the 12 months before the survey.

3.2. Survey findings

Overall, the women’s greatest concerns related to AEDtherapy were weight gain (63% ‘‘extremely’’ or ‘‘very’’ con-cerned) and bone health (64% extremely or very concerned)(Fig. 1). Women less than 35 years old were most con-cerned about AED use and pregnancy (69% extremely orvery concerned), and weight was their second most impor-tant issue (65% extremely or very concerned). For women35 years of age or older, bone health (68%) and weight(63%) were the topics of greatest concern.

Epilepsy or AED therapy was reported to have had animpact on decisions made by the women regarding preg-nancy (61% of those less than 35 years of age), weight(48% of all responders), and bone health (42% of allresponders). Of the 38% who reported that epilepsy orAED therapy influenced their decision whether to havechildren, the health of the child (80%) and the effect of tak-ing medications while pregnant (84%) were the most fre-quently reported factors influencing the decisions.

The women’s self-reported knowledge of epilepsy andAEDs differed by age (Table 1). The women reported thatthey were least well informed about bone health and men-opause, with only 36 and 31% of the respondents indicatingthat they were knowledgeable or very knowledgeable,respectively, on these topics (Fig. 2). Asked which of anumber of aspects of women’s health could be affected byepilepsy or by AEDs, 67% said that epilepsy affects preg-

28%

41%

40%

30%

17%

28%

9%

22%

24%

18%

11%

19%

Pregnancy

Weight

Bone health

Menopause

Birth control

Sexual function

Extremely Very

Fig. 1. The percentage of women (n = 434) who reported that they wereextremely or very concerned about how their antiepileptic drugs affectedparticular aspects of their health.

164 B. Vazquez et al. / Epilepsy & Behavior 10 (2007) 163–169

nancy, and 77% said that AEDs affect pregnancy. Seventy-five and sixty-eight percent of the women said that AEDsaffect weight and birth control, respectively.

The women who responded to the survey were morelikely to see a neurologist (75%) than a primary care phy-sician (22%), epileptologist (18%), or other specialist forthe management of their epilepsy. (Responders were ableto choose more than one type of provider.) They cited mostfrequently their physicians (62%) and health informationweb sites (44%) as primary sources of information aboutwomen’s health concerns. Women less than 35 years oldwere significantly more likely than women 35 years andolder to obtain most of their information about women’shealth concerns from their physician (76.3% vs 56.4%). Fif-ty-five percent of the responders felt their physicians didnot provide sufficient information about women’s healthissues and epilepsy.

When the women were asked which of several healthtopics they had discussed with their physician, the most fre-quently chosen answer was weight (55%) and the least fre-quently chosen was sexual function (22%). The topics forwhich there were the greatest gaps between the percentageof women who had discussed them with their physician andthe percentage who wanted more information were bonehealth (34% discussed, 65% wanted more), menopause(28% discussed, 53% wanted more), and sexual function(22% discussed, 44% wanted more). Compared withwomen under 35 years of age, those 35 or older weresignificantly more likely to have discussed the effects ofepilepsy on menopause (35.0% vs 7.0%) or bone health(38.7% vs 21.9%) with their physicians, but still wanted

more information on these topics (menopause: 58.9% vs35.1%; bone health: 67.8% vs 55.3%). Women youngerthan 35 were significantly more likely to have discussedpregnancy (63.2% vs 31.6%) and birth control (48.2% vs26.1%) with their physician. This group also wanted moreinformation regarding pregnancy (50.0%) and birth control(36.8%). The responses of the women in both age groupsindicated that they were more likely than their physiciansto initiate discussions of these issues (Fig. 3).

4. Discussion

Although the women in this survey reported that theirphysicians are their primary source for information relatedto epilepsy, AEDs, and women’s health issues, 55% saidthat the information they received was insufficient. Directevaluation of epilepsy patients’ knowledge of their diseasesupports the findings of this survey and has demonstratedthat patients with epilepsy can have significant misconcep-tions about their disease and its management [18,19]. Daw-kins and co-workers distributed a questionnaire to patientswith (n = 29) and without (n = 32) epilepsy that evaluatedknowledge of and attitudes toward epilepsy, views on treat-ment, and the social and legal consequences of epilepsy[19]. Overall, knowledge of epilepsy was similar betweenthe two groups. Only 7% of patients with epilepsy reportedknowing as much as they would like to know about theirdisease. In the present survey, the percentage of womenwho stated that they were less than ‘‘very knowledgeable’’ranged from 74% regarding pregnancy to 89% regardingmenopause. Although the study by Dawkins et al. didnot evaluate women’s issues, only 15 of the 29 patients withepilepsy (52%) had discussed childbearing with their physi-cian, and 11 patients (38%) reported that they would like tobe seen consistently by the same physician, who wouldknow them and allow them time to express their concerns.

The Knowledge of Women’s Issues and Epilepsy(KOWIE) questionnaire has shown reliability and validityfor administration to patients and health care professionals[20], but no studies using the questionnaire have yet beenpublished. Crawford and co-workers published the resultsof two surveys of female members of Epilepsy Action(formerly the British Epilepsy Association) [14,15]. Theresults of the first survey are consistent with those of thesurvey reported here regarding women’s lack of sufficientinformation on epilepsy-related issues. Of the 6000 mailedquestionnaires, 1855 (31%) were returned [14]. Thirty-one(16%) of the 189 responders taking birth control pills report-ed that they had not received counseling regarding possibledrug interactions, and 89 (47%) said the information theywere given was inadequate. Of the 888 women (47%) whohad children at the time of the survey, 232 (38%) claimedto have had no preconception counseling concerning AEDtherapy and pregnancy, and only 210 (24%) had discussedpregnancy issues with their physician before conception.

The Ideal World Survey, which is specific to the healthissues of WWE, was mailed to 12,000 Epilepsy Action

Table 1Percentage of women self-reported as knowledgeable or very knowledge-able about epilepsy and related health issues by age group

Health issue Women aged <35 Women aged P35

Pregnancy 64% 50%Weight gain 46% 46%Bone health 28% 38%Menopause 18% 37%Birth control 57% 45%Sexual function 36% 40%

26%

22%

13%

11%

19%

15%

28%

24%

23%

20%

30%

24%

Pregnancy

Weight gain

Bone health

Menopause

Birth control

Sexual function

Very knowledgeable Knowledgeable

Fig. 2. The percentage of women (n = 435) who reported being knowl-edgeable or very knowledgeable when asked, How would you rate yourknowledge about each of these issues as they relate to women andepilepsy?

B. Vazquez et al. / Epilepsy & Behavior 10 (2007) 163–169 165

members during January 2002 by Crawford and Hudson[15]. Of the 2600 questionnaires that were returned andthe 90 submitted through the Epilepsy Action web site,2000 were randomly selected for the analysis. For women19 to 44 years old who were considering having children(n = 498), the primary concern was the risk that epilepsymedication would affect the unborn child (87% of respond-ers). Similarly, in our survey, 80% of the women whosedecision whether to have children was influenced by epilep-sy or AED therapy were concerned about the health of thechild, and 84% were concerned about the effect of medica-tions on the child. The Ideal World Survey findings indicat-ed that 20% of the women with children had not been givenany information at all about AEDs and pregnancy and39% of the women older than 45 had not been given infor-mation about epilepsy and AED therapy in relation tomenopause or hormone replacement therapy.

Health care professionals may not provide sufficientinformation to patients regarding women’s health issuesand epilepsy or AEDs because they lack adequate educa-tion concerning these issues [16,17]. Of 202 physicians towhom the KOWIE-II (health care professional version)questionnaire was administered, 78.2% were primary care

physicians. One-fourth of these physicians did not knowthat WWE should continue AED therapy during pregnan-cy [16]. A descriptive survey to assess knowledge andawareness of women’s health issues and epilepsy amonghealth care providers was completed by 3535 practitioners[17]. Scores achieved on the survey proved to be correlatedwith the frequency with which a practitioner saw patientswith epilepsy, and neurologists achieved the highest scores(mean = 8.1, maximum score = 15).

Several online health information resources are avail-able, and web sites specific to epilepsy provide educationalmaterial on all aspects of women’s epilepsy-related healthconcerns (Table 2). For health care professionals, theEpilepsy Therapy Development Project website (http://professionals.epilepsy.com/page/specpop_women.html) andthe Epilepsy Foundation website (http://epilepsyfoundation.org) provide information on women’s health issues.

Although the findings of our study are consistent withdata from other surveys on women’s health issues and epi-lepsy, there are limits to these results. Because the surveywas conducted online with women who seek health infor-mation from online sources, the participants may not bea representative sample of the entire population of

37%

51%

29%

29%

28%

26%

24%

21%

22%

27%

13%

39%

28%

49%

61%

45%

61%

10%

Pregnancy

Weight gain

Bone health

Menopause

Birth control

Sexual function

Women Health Care Professional Not Discussed

Fig. 3. Women with epilepsy (n = 356) reported that they were more likely than their physicians or other health care providers to initiate conversationabout the issues covered by the questionnaire.

Table 2Online epilepsy-specific sites for information about women’s health issues

Site sponsor World Wide Web (www) address Comments

Epilepsy Therapy Development Project http://professionals.epilepsy.com/page/specpop_women.html Comprehensive discussion guide andPhysician’s discussion checklist

Epilepsy Foundation Epilepsyfoundation.org/programs/wei.index.cfm Women and Epilepsy initiative with ‘‘Ask theExpert’’ section, pregnancy registry, and AEDinformation

Epilepsy Action Epilepsy.org.uk/info/epwomen.html Extensive information on epilepsy andpregnancy through breastfeeding; limitedinformation on menopause and bone health

National Society for Epilepsy Epilepsyse.org.uk/pages/info/leaflets/women.cfm Hormone effects on epilepsy; contraception andpregnancy; Osteoporosis

Epilepsy Therapy Development Project http://www.epilepsy.com/info/women.html Information on contraception, pregnancy,breastfeeding, menopause and resources forwomen

166 B. Vazquez et al. / Epilepsy & Behavior 10 (2007) 163–169

WWE. Also, the questions used for this survey have notbeen tested for validity or reliability. However, these find-ings show that WWE have unmet educational needs andconcerns regarding health issues unique to women. In addi-tion, health care professionals are not meeting these needs,and additional investigation is warranted to further definethe scope of the educational gap and identify solutions.

5. Conclusions

For all women who responded to the current survey, themost important concerns related to AED therapy wereweight gain (63%) and bone health (64%). Menopauseand bone health were the topics about which they felt leastknowledgeable. This survey indicated that WWE who seekonline health information do not feel adequately educatedby their physicians about the impact of epilepsy and AEDtherapy on critical aspects of their health and well-being.Although the most frequent source of health informationfor the women surveyed was their physician (62%), theyexpressed a need for more information from their healthcare providers on all of the women’s health issues coveredby the survey.

Acknowledgments

This study was supported by GlaxoSmithKline. Edito-rial support was provided by IntraMed EducationalGroup.

Appendix A. Women with epilepsy survey

The following ‘‘Women with Epilepsy Survey’’ contains approximately15 questions and takes only a few minutes to complete. Healthology/iVillage will aggregate the responses provided by individuals respondingto this Survey Questionnaire and will provide aggregate, nonspecific infor-mation about your and others’ responses to GlaxoSmithKline, the sponsorof this site. No personally identifiable information about you is madeavailable through this process. If you want more information on howinformation is handled by Healthology/iVillage, please click here [linkto iVillage privacy statement].

1. Do you have epilepsy?

h Yes

h No

**If respondent indicates ‘‘no,’’ survey ends.

2. Please indicate your gender.

h Female

h Male

**If respondent indicates male, survey ends.

3. What is your approximate age?

h 18–24

h 25–34

h 35–44

h 45–54

h 55 and over

h Younger than 18: survey ends

4. Over the past year, have your seizures:

h Been completely controlled

h Occurred infrequently (less than 6 per year)

h Occurred frequently (more than 6 per year)

5. Are you currently taking antiepileptic drugs or medication?

h Yes

h No

Many of the questions below relate to women and their experience/knowledge

about epilepsy and women’s health issues.

6. Who do you see for your epilepsy management?

h Primary care doctor

h OB/GYN

h Neurologist

h Epilepsy specialist (epileptologist)

h Other

h None

7. To the best of your knowledge, please answer Yes or No to thefollowing:

7a. Epilepsy, as a condition, can have an impact on the following:

Yes No

Pregnancy h h

Weight h h

Bone health h h

Menopause h h

Birth control h h

Sexual function h h

7b. Antiepileptic drugs, which are used to treat epilepsy, can have animpact on the following:

Yes No

Pregnancy h h

Weight h h

Bone health h h

Menopause h h

Birth control h h

Sexual function h h

8. As a woman with epilepsy, how concerned are you with the followingfemale-related issues and your antiepileptic drugs:

Extremely Very Somewhat Not

at all

Pregnancy h h h h

Weight h h h h

Bone health h h h h

Menopause h h h h

Birth control h h h h

Sexual function h h h h

9. Has your epilepsy and your epilepsy medication impacted decisions youhave made in your life regarding:

Yes No

Pregnancy h h

Weight h h

Bone health h h

B. Vazquez et al. / Epilepsy & Behavior 10 (2007) 163–169 167

Menopause h h

Birth control h h

Sexual function h h

10. Has or will epilepsy impact your decision to have children?

h Yes

h No

If yes, what influenced that decision? (check all that apply)

h Ability to be a good parent

h Concerns about having a healthy child

h Taking medications while pregnant

h Fertility

h Other ______________________

11. Which of the following topics have you discussed with your physician?(check all that apply)

h Pregnancy

h Weight

h Bone health

h Menopause

h Birth control

h Sexual function

h None of the above

11a. If you checked any of the above, did you specifically discuss theeffects of your epilepsy medication as it relates to the followingissues? (Check all that apply)

h Pregnancy

h Weight

h Bone health

h Menopause

h Birth control

h Sexual function

h None of the above

12. Who initiated the conversation about the following issues?

I did Nurse Doctor Other

health

care

professional

Have

not

discussed

Pregnancy h h h h h

Weight gain h h h h h

Bone health h h h h h

Menopause h h h h h

Birth control h h h h h

Sexual function h h h h h

13. How would you rate your knowledge about the following issues asthey relate to women and epilepsy?

Very

knowledgeable

Knowledge-

able

Somewhat

knowledgeable

Not

knowledgeable

at all

Pregnancy h h h h

Weight gain h h h h

Bone health h h h h

Menopause h h h h

Birth control h h h h

Sexual function h h h h

14. Where do you get most of your information about female-relatedissues such as weight, birth control, bone health, and pregnancy asthey relate to epilepsy?

h Doctor

h Health-information web site

h Media (newspapers, television, radio)

h Third-party organization (Epilepsy Foundation)

h Other health care professionals (nurses, etc.)

h Other—Please indicate specific answer: ________________

15. Do you feel that your physician provides you with enough informationabout female issues relating to epilepsy?

h Yes

h No

If no, is there a particular issue you’d like more information about?(Check all that apply)

h Pregnancy

h Weight gain

h Bone health

h Menopause

h Birth control

h Sexual function

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