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

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<ul><li><p>Epilepsy and womens health issues: Unmet needsSurvey resultsfrom women with epilepsy</p><p>Blanca Vazquez a,*, Patricia Gibson b, Robert Kustra c</p><p>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, WinstonSalem, NC, USA</p><p>c GlaxoSmithKline Neurosciences Clinical Research, Research Triangle Park, NC, USA</p><p>Received 1 September 2006; accepted 23 September 2006Available online 7 November 2006</p><p>Abstract</p><p>The impact of epilepsy on women involves unique issues related to hormone eects on seizure control, seizure and drug eects onreproductive health, birth control options, and bone mineral density. Patientphysician communication on these critical issues maynot be adequate. This survey evaluated womens 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 patientphysician 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.</p><p>Keywords: Epilepsy; Patient knowledge; Womens health; Antiepileptic drugs; Online survey</p><p>1. Introduction</p><p>More than 1,000,000 females in the United States haveepilepsy, a disorder that aects all aspects of their lives,including cognitive function, education, employment, fam-ily and other personal relationships, and overall sense ofhealth and well-being [14]. Women with epilepsy(WWE) face particular problems such as hormone eectson seizure control and potential eects of seizures and anti-epileptic drugs (AEDs) on reproductive health, birth con-trol options, and bone health [511]. The eect ofhormones on seizure frequency is exemplied 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-</p><p>relation that suggests that seizures may alterneuroendocrine function [5,8].</p><p>The increased risk of these health problems in WWE hasbeen attributed both to the disease process and to adverseeects 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 eect 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 dierence was statistically signicantoverall, both were signicant (P &lt; 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</p><p>1525-5050/$ - see front matter 2006 Elsevier Inc. All rights reserved.doi:10.1016/j.yebeh.2006.09.013</p><p>* Corresponding author.E-mail address: blancavs@netscape.net (B. Vazquez).</p><p>www.elsevier.com/locate/yebeh</p><p>Epilepsy &amp; Behavior 10 (2007) 163169</p></li><li><p>been linked to the development of PCOS. In a group ofyoung WWE who were treated with one AED, PCOSwas signicantly 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].</p><p>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 aects women only [10]. Deni-tive data on the comparative eects 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 signicantly higher levels of bone-specic alkalinephosphatase, a marker of bone turnover [11].</p><p>To cope with a disease such as epilepsy that can aecttheir way of life and well-being in manifold ways, patientsmust be armed with information and understanding. Thedemonstrated benets 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 womens knowledge of their distinc-tive epilepsy-related concerns is poor and that healthcare professionals do not inform WWE sucientlyabout 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].</p><p>Results of a recent online survey of WWE are discussedin this article. The survey was designed to evaluate thewomens 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 patientphysician dialogue to determine whetherwomen felt a need for more information from their physi-ciansor better education of physiciansconcerning theseissues.</p><p>2. Methods</p><p>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 identied 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 womens health issuesaddressed by the survey were birth control, pregnancy, menopause, bonehealth, and sexual function. Descriptive statistics were used, and standardt tests (95% condence level) were performed for comparisons betweenresponses to specic questions and by age group. Dierences betweengroups where the 95% condence intervals did not overlap were consid-ered signicant.</p><p>3. Results</p><p>3.1. Population</p><p>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.</p><p>3.2. Survey ndings</p><p>Overall, the womens 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.</p><p>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 inuenced their decision whether to havechildren, the health of the child (80%) and the eect of tak-ing medications while pregnant (84%) were the most fre-quently reported factors inuencing the decisions.</p><p>The womens self-reported knowledge of epilepsy andAEDs diered 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 womens health could be aected byepilepsy or by AEDs, 67% said that epilepsy aects preg-</p><p>28%</p><p>41%</p><p>40%</p><p>30%</p><p>17%</p><p>28%</p><p>9%</p><p>22%</p><p>24%</p><p>18%</p><p>11%</p><p>19%</p><p>Pregnancy</p><p>Weight</p><p>Bone health</p><p>Menopause</p><p>Birth control</p><p>Sexual function</p><p>Extremely Very</p><p>Fig. 1. The percentage of women (n = 434) who reported that they wereextremely or very concerned about how their antiepileptic drugs aectedparticular aspects of their health.</p><p>164 B. Vazquez et al. / Epilepsy &amp; Behavior 10 (2007) 163169</p></li><li><p>nancy, and 77% said that AEDs aect pregnancy. Seventy-ve and sixty-eight percent of the women said that AEDsaect weight and birth control, respectively.</p><p>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 aboutwomens health concerns. Women less than 35 years oldwere signicantly more likely than women 35 years andolder to obtain most of their information about womenshealth concerns from their physician (76.3% vs 56.4%). Fif-ty-ve percent of the responders felt their physicians didnot provide sucient information about womens healthissues and epilepsy.</p><p>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 weresignicantly more likely to have discussed the eects ofepilepsy on menopause (35.0% vs 7.0%) or bone health(38.7% vs 21.9%) with their physicians, but still wanted</p><p>more information on these topics (menopause: 58.9% vs35.1%; bone health: 67.8% vs 55.3%). Women youngerthan 35 were signicantly 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).</p><p>4. Discussion</p><p>Although the women in this survey reported that theirphysicians are their primary source for information relatedto epilepsy, AEDs, and womens health issues, 55% saidthat the information they received was insucient. Directevaluation of epilepsy patients knowledge of their diseasesupports the ndings of this survey and has demonstratedthat patients with epilepsy can have signicant 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 knowledgeableranged from 74% regarding pregnancy to 89% regardingmenopause. Although the study by Dawkins et al. didnot evaluate womens 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.</p><p>The Knowledge of Womens 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 rst survey are consistent with those of thesurvey reported here regarding womens lack of sucientinformation 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.</p><p>The Ideal World Survey, which is specic to the healthissues of WWE, was mailed to 12,000 Epilepsy Action</p><p>Table 1Percentage of women self-reported as knowledgeable or very knowledge-able about epilepsy and related health issues by age group</p><p>Health issue Women aged </p></li><li><p>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 aect the unborn child (87% of respond-ers). Similarly, in our survey, 80% of the women whosedecision whether to have children was inuenced by epilep-sy or AED therapy were concerned about the health of thechild, and 84% were concerned about the eect of medica-tions on the child. The Ideal World Survey ndings 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.</p><p>Health care professionals may not provide sucientinformation to patients regarding womens 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, 7...</p></li></ul>