Epilepsy & Behavior 31 (2014) 246–255

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Epilepsy & Behavior

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Review

Pregnancy-related knowledge and information needs of women with epilepsy:A systematic review

Amanda McGrath a, Louise Sharpe a,⁎, Suncica Lah a,b, Kaitlyn Parratt c

a The School of Psychology A18, The University of Sydney, NSW 2006, Australiab ARC Centre of Excellence in Cognition and its Disorders, Macquarie University, NSW 2109, Australiac Comprehensive Epilepsy Service, Royal Prince Alfred Hospital, Missenden Road, Camperdown, NSW 2050, Australia

⁎ Corresponding author. Fax: +61 2 9036 5223.E-mail address: louise.sharpe@sydney.edu.au (L. Sharp

1525-5050/$ – see front matter. Crown Copyright © 2013http://dx.doi.org/10.1016/j.yebeh.2013.09.044

a b s t r a c t

a r t i c l e i n f o

Article history:Received 23 July 2013Revised 23 September 2013Accepted 29 September 2013Available online 5 November 2013

Keywords:EpilepsyPregnancyKnowledgePreconceptionCounselingNeeds

For women with epilepsy (WWE), pregnancy is complicated by considerations such as the potential teratogenicityof antiepileptic drugs (AEDs) versus the risks of having seizures during pregnancy. However, qualitative researchsuggests that many WWE remain uninformed about the risks associated with epilepsy and pregnancy and may,therefore, be making uninformed decisions about their families. The objectives of this review were to determinethe level of patient knowledge, their informational needs, and whether these needs concerning pregnancy andchildbirth issues are met among WWE. Electronic databases searched were PsycINFO, MEDLINE, Embase, CINAHL,and Web of Science. Studies were included if they used quantitative methods to survey WWE aged 16 years orolder about their knowledge, access to information, or informational needs specifically regarding epilepsy andpregnancy. Twelve studies were identified and assessed for research standards using the Quality Index. OverallQuality Index score was only 7.1 out of 14, indicating significant design limitations of many included studies,including highly selective sampling methods and the use of unvalidated outcome measures. There was a paucityof studies investigating specific areas of women's knowledge and information needs. Overall, WWE reportedadequate awareness, but limited knowledge, of key issues regarding pregnancy and childbirth. Across studies,many women reported not receiving information about these issues. Evidence suggested that manyWWEwantedto receivemore information– particularly about the risks of AEDs for their offspring–well in advance of choosing anAED or planning pregnancy. Women aged under 35years wanted the most information. Preconception counselingreceived by many WWE appears insufficient, risking uninformed decision-making about pregnancy. Furtherresearch is needed to investigate the barriers that WWE face in accessing, receiving, and retaining appropriateinformation.

Crown Copyright © 2013 Published by Elsevier Inc. All rights reserved.

1. Introduction

Epilepsy is the most common maternal neurological disorder inpregnancy requiring continuous treatment [1], with estimates that threeto four births per thousand will be born to women with epilepsy(WWE) [2,3]. Although most WWE can expect normal pregnancyoutcomes [4], the reproductive choice is complex. Pregnancy can increaseseizure frequency in someWWE, and bothmaternal epilepsy and in uteroexposure to antiepileptic drugs (AEDs) can increase the risk to the unbornchild, including perinatal death, congenital malformations, low birthweight, developmental delay, and childhood epilepsy [5]. Althoughmost children born to WWE are at low risk of inheriting epilepsy, thisrisk is greater for women whose epilepsy has an underlying geneticcause [6,7]. Further, the precise risks are not known for every type ofepilepsy, producing added uncertainty for someWWE.

e).

Published by Elsevier Inc. All rights r

Given these complex considerations, WWE need information aboutepilepsy and pregnancy prior to conception. A particular emphasis hasbeen placed on effective birth control, planned pregnancies, AED op-timization, and vitamin supplementation [8,9]. There is some suggestionthat folic acid and vitamin K supplementation are particularly importantfor WWE as there is some evidence that AEDs can increase the riskof negative outcomes that can be prevented by supplementation(e.g., neural tube defects and hemorrhagic disease) [10]. Furthermore,given the known benefits of breastfeeding, and in the absence of goodquality studies showing that breastfeeding while taking AEDs is harmfulfor the baby, breastfeeding is generally encouraged for WWE.

Despite the absence of randomized control trials (RCTs) of pre-conception counseling [11], several studies with retrospective designssuggest that pregnancy planning, including preconception AED opti-mization, can improve pregnancy outcomes [12–14]. Practice guide-lines for managing pregnancy in WWE consistently promote the needfor effective preconception counseling for WWE throughout thereproductive years [8–10,15,16].

eserved.

Table 1Database search strategy.

Database: PsycINFO (OVID) b1806 to December 2011N

Search strategy (limits: English, Human)

1. exp epilepsy/2. epilepsy.mp.3. 1 or 24. exp pregnancy/5. (pregnan* ormother* or maternal or parent* or conception* or preconception* or

fetus or fetal or embryo* or teratogen*).mp. [mp= title, abstract, heading word,table of contents, key concepts, original title, tests & measures]

6. exp teratogens/7. 4 or 5 or 68. (need* or information or informed or counseling or counselling or knowledge or

education or teaching or awareness).mp. [mp = title, abstract, heading word,table of contents, key concepts, original title, tests & measures]

9. 3 and 7 and 8

247A. McGrath et al. / Epilepsy & Behavior 31 (2014) 246–255

Nevertheless, findings from qualitative research suggest that manyWWE remain uninformed about key issues regarding epilepsy andpregnancy [17–20]. Interviews with WWE suggest that some womenreceive insufficient information from health-care professionals or areoffered advice too late to enable them to take appropriate actionregarding key issues such as contraception, folic acid use, preconceptionAED review, and child safety in the case of seizures [18]. However, evenamong those who are known to access preconception advice, some

Database search: 23 December 2011

Databases: Medline, PsycINFO, Web of Science, CINAHL, Embase

1st stage screening: titles & abstracts

Inter-rater reliability by 2 independent raters on 130 abstracts chosen at random: 100%

45 potentially applicable papers

2nd stage screening: full text

Manuscript review of 53 articles by 2 independent raters

Results compared and discrepancies resolved by consensus

12 papers

1,803 papers identified

Fig. 1. Flow of identification

women report confusion in response to conflicting advice from doctorsabout taking medication during pregnancy [18]. These findings areconcerning, as they indicate that some WWE may be makinguninformed decisions about their families and may be placingthemselves and their offspring at greater risk of harm than is necessary.

The aim of this study was to determine the level of patientknowledge, their informational needs, and whether these needsconcerning pregnancy and childbirth issues are met among WWE.Therefore, this systematic review examined the available evidenceregarding the following three questions:

1. DoWWE of childbearing age have knowledge about issues related topregnancy and childbirth in epilepsy?

2. Do WWE report receiving information regarding pregnancy andchildbirth in epilepsy?

3. Do WWE identify unmet informational needs regarding pregnancyand childbirth issues in epilepsy?

2. Methods

2.1. Literature search strategy

The following databaseswere searched in December 2011: PsycINFO,MEDLINE, Embase, CINAHL and Web of Science, with the search termsset out in Table 1. All Medical Subject Heading (MeSH) terms were

1,758 papers excluded

Reasons: Did not meet selection criteria

41 papers excluded

Reasons:

No outcomes of interest = 20

Qualitative = 5

Not WWE’s perspectives = 3

Concerns/Fears = 3

Adolescents = 2

Mixed ages = 2

Mixed sex = 3

Not epilepsy = 2

No epilepsy-specific data = 1

7 papers that met criteria for inclusion identified via handsearch of located, relevant papers

1 paper that met criteria for inclusion identified via Google Alerts

•

•

•

•

•

•

•

•

•

and selection process.

248 A. McGrath et al. / Epilepsy & Behavior 31 (2014) 246–255

exploded to broaden the search for relevant studies. Google Alertspertaining to the search criteria were arranged for the period December2011–April 2012 to receive e-mail updates regarding any newlypublished studies after the initial search was conducted. Reference listsof key manuscripts were handsearched (i.e., manually searched toidentify any relevant studies not already identified in the electronicsearch), a method known as the ancestry method.

2.2. Study selection criteria

2.2.1. Types of studiesStudies were included if they (a) reported original research;

(b) involved WWE aged 16 years or older; (c) were published in theEnglish language in peer-reviewed journals; and (d) used quantitativemethods to survey women's knowledge, experience accessing infor-mation, or informational needs at one point in time.

Manuscripts were excluded if (a) they combined results for adultsand teenagers (less than 16years old); (b) information on the outcomesof interest was only obtained through indirect means, such as viasecondary reports from health practitioners or case note reviews; or(c) they reported only participants' fears, concerns, or anxieties, ratherthan knowledge or needs about pregnancy-related issues.

Table 2Summary of studies reviewed regarding pregnancy-related knowledge levels of WWE.

Author (year),country

Methods Samplea

Kochen et al. (2011),Argentina

Questionnaire N=94, pregnantWWE taking AEDs atconception; aged 18–40years; 68% Whiteethnicity, 25% mixed descent (Black andAsian); 70% focal epilepsy, 24% generalized

Metcalfe et al. (2012),Canada

Questionnaire N=100, WWE; median age=29 years,18–50 years; active epilepsy for at least6months, 79% tonic–clonic, 47% complexpartial, 69% multiple types, 41% had aseizure in past 9months; 47% previouslybeen pregnant

Pack et al. (2009),United States

Questionnaire(English or Spanish)

N=148, WWE; M=31.7 years,18–44 years; 32% self-identified as Hispanic.

Vazquez et al. (2007),United States

Online survey N=440, WWE taking AEDs; aged N

18 years, 57% 18–44 years; 38% frequentseizures (N6); 29% infrequent seizures(b6); 33% seizure-free

WWE, women with epilepsy; QI, Quality Index score; M, mean; AEDs, antiepileptic drugs; OC,a Variation in listed sample characteristics is due to the variation of reporting in the originalb Unless otherwise stated, percentages reflect the proportion of women who reported corre

2.2.2. OutcomesOutcomes of interest were defined in consultation with the

American Academy of Neurology (AAN) and American Epilepsy Societypractice guidelines for managing pregnancy in WWE [10,15,16]. Inaddition, themes identified in the research as being important towomen contemplating pregnancy in the context of a medical condition(e.g., risk of offspring inheriting the illness) were also included asoutcomes [21–24]. In the current study, outcomes of interest included(i) the impact of epilepsy or AEDson contraception, pregnancy, delivery,mother and child outcomes, and breastfeeding and (ii) preconceptionalplanning: advice about folic acid and prenatal vitamin K, the risk ofinheriting epilepsy, and the impact of pregnancy on epilepsy-relatedvariables (e.g., metabolic impact on medications).

2.3. Methods of the review

Fig. 1 displays the flow diagram describing the process of studyselection. One thousand eight hundred and three articles were initiallyidentified. First, titles and abstracts were reviewed to determine theirrelevance by one reviewer (AM). The full manuscripts were obtainedif the abstract could not be excluded with certainty. Second, a randomselection of 130 (7.2%) abstracts was reviewed by an independent

Recruitmentsource

Findings: levels of pregnancy-related knowledgeb QI

Epilepsy centerat hospital

Epilepsy can impact on:• Pregnancy (80%)• The baby's health (90%)• Birth control (60%)

AEDs can impact on:• Pregnancy (40%)• The baby's health (90%)• Birth control (60%)

Outpatient clinicin large tertiarycare center

Impact of epilepsy on pregnancy(median score for 10-item questionnaire: 40%, 0–80%)

• Folic acid possibly reduces risk of birth defects (64%)• Importance of seizure freedom prior to pregnancy (7%)• No increased risk for pregnancy complications (18%)• Pregnancy can alter the metabolism of AEDs (64%)• Increased risk of smaller babies (10%)• No increased risk of brain bleeding in baby (23%)• No increased risk for infant mortality (42%)• Possible exposure to AEDs in utero or via breast milk (72%)• Some AEDs pose higher risk of birth defects (60%)• Neurodevelopmental implications of AED exposure (6%)

10

Epilepsy center AED–oral contraceptive (OC) interactions:• WWE taking AED associated with OC failure (32%; n=21)• WWE taking 1 AED (28.1%; n=42)• WWE taking 2 AEDs (6.8%; n=10)• WWE taking 3 AEDs (0%; n=9)• WWE taking Category D AED: knew AEDs could negativelyaffect fetus (44%; n=22): unaware of potential effects (40%)

9

Healthologywebsite

Epilepsy can impact on pregnancy (67%)AEDs can impact on:• Pregnancy (77%)• Birth control (68%)

Rated self as “knowledgeable or very knowledgeable” about:• Pregnancy (54%)• Birth control (49%)WWE b35 years rated selves as more knowledgeable.

4

oral contraceptive.manuscripts.ct knowledge about the specified topic.

Table 3Summary of studies reviewed regarding the pregnancy-related information that women reported they received.

Author (year), country Methods Samplea Recruitment source Findings: information or advice receivedb QI

Bagshaw et al. (2008),United Kingdom

Postal and onlinequestionnaire

N=84, WWE; aged 19–45 years,M=32 years; 72% tonic–clonicseizures, 20.2% seizure-free; 94% 1+ children

Epilepsy Action, UK(epilepsy support association)

Breastfeeding (57.9%)

• 69.0% found this information useful

6

Bell et al. (2002),United Kingdom

Postal questionnaire N=795, WWE;subgroup A: aged 16–39 years (n=350–392)

Mix of GP and outpatient hospitalsamples

Women aged 16–39 yearsc:

• Contraception (55.8%)• Prepregnancy planning (52.5%)• Folic acid (44.3%)• Risk of medications to unborn baby (53.3%)• Vitamin K (11.5%)• Breastfeeding (18.8%)

10

Chappell and Smithson(1998), United Kingdom

Questionnaire N=178, PWE; 60% (n=105) WWE; amongwhole sample: 27% seizure-free, 21% 1–12 seizuresp.a., 52% 12+ p.a.

General practices, secondary careclinics, National EpilepsyOrganisation, UK

Epilepsy and contraception (30%)Epilepsy and pregnancy (34%)

7

Crawford and Hudson(2003), United Kingdom

Postal and online survey N=2000, WWE; aged 19–64 years;subgroup A: with children (n=419)subgroup B: 19–34 years taking enzyme-inducingAED/s

Epilepsy Action, UK Pregnancy and medication (women with children):

• No advice about AEDs and pregnancy (20%)• Not told anything until pregnant (13%)• Medication may affect unborn child (46%)• Preconception counseling (7%)• Folic acid (43%)• Vitamin K (11%)• Younger women (19–34 years) given more advice

Epilepsy and contraception(19–34 years on enzyme-inducing AED/s):

• AED-OCP interactions (55%)

7

Crawford and Lee (1999),United Kingdom

Questionnaire survey N=1855, WWE; aged 16+years; 34%well-controlled epilepsy; 47% had children, 23%planning childrensubgroup A: taking AEDs and OCP (n=83)subgroup B: with children (n=880)subgroup C: planning children in next 2 years(n=169)

British Epilepsy Association (BEA) Contraception and AEDs (all/women on AED and OCP):

• No advice received (51%/11%)• Reduced efficacy of OCP (26%/58%)

Pregnancy and epilepsy (all/womenwith children/women planning children):• No advice received (34%/38%/20%)• Effects of medication (23%/11%/33%)• Teratogenicity (7%/5%/15%)• Prepregnancy counseling (6%/2%/10%)• Folic acid supplements (5%/5%/20%)

Sources of advice (all/women with children/womenplanning children):

• Hospital specialist (23%/22%/54%)• GP (13%/15%/31%)• BEA (7%/6%/11%)• Friend/relative, nurse, media, library (all b5%)

5

Fairgrieve et al. (2000),United Kingdom

Interview using a standardquestionnaire, hospital file review

N=300, pregnant WWE; 71% ongoing seizures;epilepsy diagnosis questionable in 5%.

Predominantly by communitymidwives

Preconceptional counseling (38%)

• Review of notes found 8/25 (32%) who deniedreceiving advice had been counseled

8

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Table 3 (continued)

Author (year), country Methods Samplea Recruitment source Findings: information or advice receivedb QI

Ito et al. (1995), Canada Interview (open-ended andclose-ended questions)

N=68; 34 pregnant WWE receiving AEDsand 34 pregnant age-matched controls;M=27.4 years

Teratogen-toxicant informationservice/clinic

Breastfeeding and medication (94.1% WWE)Sources of information on breastfeeding:

• Physicians (45%)• Motherisk (13%)• Family (11%), friends (11%)• Nurse (8%), lay media (8%)• Pharmacist, others (b3%)

Nature of physician advice on breastfeedingwhen taking AEDs:

• In favor (47%), against (28%), equivocal (35%)

5

Kampman et al. (2005),Norway

Questionnaired, case notereview

N=112, WWE; aged N17 yearssubgroup A: child-raising potential (n= 94)subgroup B: child-raising potential takingenzyme-inducing AEDs (n=56)

Hospital neurology department Women of child-raising potential:

• Planned pregnancy (77%)• Folic acid (74%)

Women of child-raising potential on enzyme-inducingAEDs:

• AED-OCP interactions (71%)

Sources of information:• Neurologists (Women of child-raising potential: 63%)• GPs (41%)• Written patient material (40%)• Friends and relatives (39%)• Media (32%)• Patient organizations (25%)• The Internet (15%)

9

Kochen et al. (2011),Argentina

Questionnaire N=94, pregnant WWE taking AEDs at conception;18–40 years; 68% White ethnicity, 25% mixed descent(Black and Asian); 90% pregnancies unplanned

Epilepsy center at hospital Family planning discussed with physician (60%, mostlyduring pregnancy)

8

Vazquez et al. (2007),United States

Online survey N=440, WWE taking AEDs; aged N18 years; 57%18–44 years; 38% frequent seizures (N6); 29%infrequent seizures (b6); 33% seizure-freesubgroup A: 18–34 years (25%)subgroup B: 35+years (75%)

Healthology website Discussed with a health-care professional:

• Pregnancy (61%)• Birth control (55%)

Younger WWE more likely to discuss(18–34 years/35+years):

• Pregnancy with physician (63.2%/31.6%)• Birth control (48.2%/26.1%) with physician• Health information with physician (76.3%/56.4%)

Primary sources:

• Physicians (62%)• Health websites (44%)WWE more likely than physicians to initiate discussions.

4

WWE, women with epilepsy; QI, Quality Index score; M, mean; AEDs, antiepileptic drugs; PWE, people with epilepsy; BEA, British Epilepsy Association; GP, General Practitioner; OCP, oral contraceptive pill.a Variation in listed sample characteristics is due to the variation of reporting in the original manuscripts.b Outcomes of interest for this review relate only to the questionnaire.c Unless otherwise stated, percentages reflect the proportion of women who reported receiving information about the specified topic.d Proportions were estimated by the present authors from a graph (Figure 1, p. 145) presented in the paper. Therefore, data may be imprecise.

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assessor (LS) to ensure interrater reliability (100% agreement). Third,the manuscripts of 45 selected relevant studies (2.5%) were reviewed,and an additional seven papers meeting the selection criteria wereidentified via a handsearch of the reference lists of these papers. Oneadditional paper was identified through Google Alerts. Fourth, twoindependent raters (AM and LS) assessed 53 manuscripts for inclusion,and discrepancies were resolved by consensus. Forty-one manuscriptswere excluded. Data were abstracted from the remaining 12 manus-cripts by one reviewer (AM). The outcomes were categorized accordingto themes determined by consensus (AM and LS), and where there wasany discrepancy, a third author was consulted (SL or KP). The manu-scripts were assessed for quality (by AM and LS) utilizing a modifiedversion of the Quality Index [25], which was previously used in asystematic review of depressive symptoms among mothers of childrenwith epilepsy [26]. We excluded an item about the distribution of thedata because the primary outcome was descriptive, and groupcomparisons were not relevant. The Quality Index has good reliabilityand validity for measuring methodological quality [27–29]. Items werescored either 0 (no/unable to determine) or 1 (yes), with a maximumscore of 14. Three subscales and a single item comprised the QualityIndex: reporting (0–6), external validity (0–3), internal validity (0–4),and study power (0–1). Higher scores indicated higher methodologicalquality. The interrater reliabilitywas excellent (r=0.81). The two raters(AM and LS) resolved disagreements regarding quality assessmentthrough discussion for final reporting.

3. Results

Twelve studies (see Tables 2, 3, and4 for details), published between1995 and 2012 and involving 6067 participants, met the eligibilitycriteria. The studies were conducted in the United Kingdom (n = 6),Canada (n=2), Norway, Argentina, and the United States. One furtherstudy was conducted via the Internet using a United States-basedwebsite. All studies surveyed women, 11 of which involved question-naires and two involved interviews.

Table 4Summary of studies reviewed regarding pregnancy-related information needs of WWE.

Author (year), country Methods Samplea

Crawford and Hudson(2003), United Kingdom

Postal and onlinesurvey

N=2000, WWE; aged 19–64 yearssubgroup A: aged 19–44 years,considering children (n=498)

Vazquez et al. (2007),United States

Online survey N=440, WWE taking AEDs; aged N18 yea57% 18–44 years; 38% frequent seizures(N6 past years); 29% infrequent (b6 past y33% seizure-free

WWE, women with epilepsy; QI, Quality Index score; AEDs, antiepileptic drugs.a Variation in listed sample characteristics is due to the variation of reporting in the originalb Unless otherwise stated, percentages reflect the proportion of women who reported need

3.1. Quality of included studies

The totalmeanQuality Indexwas 7.1 out of 14.0 (SD=2.2) suggestingmoderate quality across the studies. Most studies demonstrated poor tomoderate external validity with an average score of 1.3 out of 3.0(SD=1.2). Notably, only two of the twelve studies (16.7%) included inour review recruited participants who were representative of the sourcepopulation [30,31]. The mean score on the internal validity subscale was2.0 (out of 4.0, SD = 0.6), although only five studies clearly describedparticipant characteristics [30,32–35]. Overall, the studies scored thehighest on the reporting subscale (mean score: 3.8 out of 6.0, SD=1.3).Only two studies used outcome measures with demonstrated validityand reliability [30,31]. No studies reported using sample size or powercalculations.

3.2. DoWWE of childbearing age have knowledge about pregnancy-relatedissues?

Only four out of 12 studies were relevant to question 1. None ofthese studies examined all the core aspects of knowledge related tothe impact of epilepsy and epilepsy medication on birth control,pregnancy, and children of WWE (see Table 2).

Two studies assessed knowledge of birth control. Kochen et al. [35]found that 60% of respondents knew that epilepsy could have an impacton birth control. Vazquez et al. [36] reported that 49% of women ratedthemselves as “knowledgeable” or “very knowledgeable” about birthcontrol as it relates to women with epilepsy, but they did not assessthe accuracy of these reports.

Three studies examined specific knowledge of the impact of AEDs oncontraceptive efficacy. In these studies, 60% and 68% of WWE reportedawareness that AEDs can impact birth control, respectively [35,36]. Athird study assessed more specific knowledge: Pack et al. [31] foundthat only 32% of WWE taking an AED associated with an increased riskof hormonal contraceptive failure were aware of decreased contra-ceptive efficacy. Among all WWE using AEDs, accuracy rates were low.

Recruitment source Findings: information needsb QI

Epilepsy Action, UK Want information at diagnosis or beforecontemplating pregnancy:

• Pregnancy (71%)• Offspring risk of epilepsy (66%)• AEDs and pregnancy/fetal development (65%)

Want information on contraception:

• At diagnosis (25%)• Before or at puberty (36%)• Before considering pregnancy (15%)

Format preferences:

• Written format (59%), health-careprofessional (28%)

• Videotapes (5%), Internet (4%)

Women aged 19–44 years information needs:

• Risk of treatment to unborn child (87%)• Latest information on above issue, even ifincomplete (57%)

5

rs,

ears);

Healthology website Young WWE b35 years wanted more informationabout:

• Pregnancy (50.0%)• Birth control (36.8%)

4

manuscripts.ing or wanting information about the specified topic.

252 A. McGrath et al. / Epilepsy & Behavior 31 (2014) 246–255

Only 28% of women taking one AEDwere correct in whether it affectedcontraception, but among those taking two or more, accuracy ratesdropped to below 7%.

Only one study assessed knowledge of the importance of folic acid inpregnancy. Metcalfe et al. [30] found that 64% (n=100) of WWE knewthat taking folic acid before pregnancy could possibly lower their baby'srisk of birth defects. No studies investigated women's knowledge of therisk of offspring developing epilepsy.

In two studies, 67–80% ofWWEwere aware that epilepsy could affectpregnancy [35,36]. However, only half (54%) of WWE rated themselvesas “knowledgeable” or “very knowledgeable” about pregnancy [36]. Ina third study that employed 10 multiple-choice questions, overall res-pondent knowledge ranged from 0 to 80%, with a median questionnairescore of 40% [30]. Only 7% of the participants knew that being seizure-free for at least nine months prior to pregnancy increased the chancesof remaining seizure-free during pregnancy. Furthermore, only 18% ofwomen believed that WWE were no more likely than other women tohave pregnancy complications (i.e., preterm birth, cesarean sections,and bleeding), despite the fact that the AAN guidelines concluded thatthere was no strong evidence that WWE have a substantially increasedrisk of these complications during pregnancy [15]. In contrast, 64% ofWWE knew that pregnancy could alter the metabolism of medications.

In terms of impacts on the child, two studies found that 40–77% ofWWE knew that AEDs could have an impact on pregnancy in general[35,36], although specific effects were not assessed. Kochen et al. [35]found that 90% of WWE knew that epilepsy could have an impact onthe baby's health. Metcalfe et al. [30] found that a minority of res-pondents answered in accordance with the conclusions of the AANguidelines [15,16], which suggest that WWE are more likely to havesmaller babies (10%) than women without epilepsy and that babies ofWWE do not carry an increased risk of developing a brain bleed (23%)or dying at birth (42%).

Three studies examined knowledge about the impacts of AEDs onthe child. Two studies found that 72–90% of respondents knew thatAEDs could have an impact on the baby's health [30,35]. Approximatelyhalf of the women (44–60%) were specifically aware of the increasedrisk of birth defects associated with some AEDs [30,31], but only 6% ofWWE knew that exposure to certain AEDs in utero may have long-term neurodevelopmental implications for children [30].

3.3. Do WWE receive information regarding pregnancy-related issues?

3.3.1. Information received by WWETen of the 12 papers included at least one item relating to the extent

to whichWWE receive information regarding pregnancy-related issues(see Table 3).

Eight studies assessedwhether or notWWE reported receiving birthcontrol advice and/or preconceptional counseling [33–40]. The pro-portion of WWE who received this information ranged from 6 to 77%.Vazquez et al. [36] noted that younger women (less than 35 years old)were more likely to have discussed birth control with their physicianthan older women (48.2% vs. 26.1%). Three studies found that 49–71%of WWE reported receiving information about interactions betweenepilepsy medications and the contraceptive pill [38–40]. Crawford andLee [39] reported that this percentage increased to 89% amongwomen taking both enzyme-inducing AEDs and oral contraceptive pills.

Two studies found that 11% of WWE of childbearing age recalledbeing told about taking vitamin K in pregnancy [33,40]. Four studiesfound that 5–74% of women had been advised about taking folic acid[33,38–40]. Crawford and Hudson [40] reported that the percentagewas significantly higher in the younger age group.

Three studies found that 34–66% of WWE reported having beengiven information about pregnancy and epilepsy [34,36,39]. Vazquezet al. [36] reported that women younger than 35 years old were twiceas likely to report having discussed pregnancy with a health-careprofessional than older women (63.2% vs. 31.6%). Similarly, Crawford

and Lee [39] found that women planning to have children within twoyears reported the highest rates of receiving advice about epilepsy andpregnancy, although 20% still reported receiving no information.

Three studies reported on information about pregnancy andepilepsy medication. Two of these found that 20–89% of women withchildren had not received information or advice on this general topic[39,40]. In Crawford and Hudson's study (i.e., 20%), a further 13%reported being given information after conception [40]. Two studiesfound that around half (46–53%) of WWE recalled receiving infor-mation about the risks of epilepsy medication to the unborn baby[33,40]. Crawford and Lee [39] found that 5% of women with children(n= 880) and 15% of women planning a pregnancy within two years(n=169) reported receiving advice specifically about teratogenicity.

Three studies assessed information received by women aboutbreastfeeding [32,33,41]. Ito et al. [41] interviewed pregnant WWEreceiving AEDs who had contacted a teratogen-toxicant informationservice. They found that 32 (94%) of 34 pregnant women receivingAEDs had obtained information about compatibility of medicationwith breastfeeding. According to the women, 28% of physicianscounseled against breastfeeding during AED therapy, whereas 47%were in favor, and 35% were equivocal. The two remaining studiesfound that fewer women (18.8–57.9%) had received advice aboutbreastfeeding [32,33]. However, the precise nature of the advice wasnot recorded.

3.3.2. Sources of informationFour studies assessed the sources from which women received

information about pregnancy-related information [36,38,39,41]. Twostudies found that 45–62% of women reported receiving informationfrom “physicians”, although their speciality was not assessed [36,41].The remaining two studies reported that 23–63% of women specifiedhospital specialists including neurologists as their primary source ofinformation [38,39]. Among women planning to have children in thenext two years, 54% of WWE reported consulting hospital specialistsabout pregnancy [39]. Similarly, Vazquez et al. [36] found thatwomen under 35 years were more likely than older women to obtaininformation from their physician (76.3% vs. 56.4%).

When asked, a sizableminority ofwomen in all four studies reportedother sources of information about pregnancy and epilepsy includingfriends and family, written patient material, the Internet, generalpractitioners, epilepsy organizations, and the media (see Table 3 fordetails).

3.4. Do WWE identify unmet informational needs regardingpregnancy-related issues?

This question was addressed in only two published studies (seeTable 4). Vazquez et al. [36] found that women less than 35 years oldwanted more information than what their physicians had providedregarding pregnancy (50%) and birth control (36.8%). Crawford andHudson [40] found that most women wanted information either atdiagnosis or before contemplating pregnancy. Specifically, 76% ofWWE wanted early information about contraception, 71% aboutpregnancy, 66% about the risk of a child developing epilepsy, and 65%about the potential impact of AEDs on pregnancy and fetal develop-ment. Among women currently considering children, 87% wantedmore information about the risk of epilepsy medication affecting theunborn child, with 57% preferring the latest information, even if thedata are incomplete. The majority (59%) of women in this studypreferred written information, 28% preferred information from ahealth-care professional, and 4% via the Internet.

4. Discussion

The aim of this review was to determine the level of patientknowledge, their informational needs, and whether these needs

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concerning pregnancy and childbirth issues are met among WWE.Overall, the evidence suggests that themajority ofWWEof childbearingage have an awareness that there are issues specific to epilepsy andpregnancy. However, when more specific questions are asked, itappears that their knowledge about these issues is limited. Manywomen recall receiving insufficient information about these issues. Offurther concern is that a sizable minority of women turn to potentiallyunreliable sources for information (i.e., the Internet, friends andrelatives, and the media). Evidence suggests that a large number ofWWE considering children would like additional information aboutpregnancy and childbirth issues well before choosing an AED orconsidering pregnancy. Together, these findings indicate that manypatients' information needs are not being met.

4.1. Awareness but not necessarily knowledge

In general, the majority (between 60 and 90%) of women reportedawareness of issues regarding pregnancy and epilepsy, including thatepilepsy and AEDs can have an impact on pregnancy, the baby's health,and birth control and that pregnancy can change the way their bodymetabolizes medications. However, across most studies, when probedfor more specific knowledge of the nature of these impacts, womendemonstrated poor knowledge (6–64% accuracy). Most notably, only 7%of women knew that being seizure-free for at least nine months prior topregnancy increased chances of remaining seizure-free duringpregnancy,and 6% knew that exposure to certain AEDs in utero may have long-termneurodevelopmental implications for children [30]. The latter findingmay be attributed to the fact that cognitive outcome of children exposedto AEDs in utero is a relatively new area of investigation in the literature[42,43]. Nonetheless, this is clearly important information for women tofactor into their decision-making. Of concern is the finding in one studythat only a third of WWE taking an AED associated with an increasedrisk of contraceptive failure knew about the decreased efficacy of oralcontraceptives [31]. Indeed, the more AEDs a woman was taking, thepoorer her knowledge of thesemedication interactions [31]. This suggeststhatwomenwith themost severe forms of epilepsy, whose contraceptionis most likely to fail, are potentially at the greatest risk of unplannedpregnancies.

Although no studies that met the selection criteria examinedperceived risk of offspring to develop epilepsy, one study has assessedthis issue among both men and women with epilepsy. Helbig et al.[44] found that the participants tended to overestimate the epilepsyrisk in the offspring of an affected parent, with a mean estimated riskof 26%, a four-fold increase over estimated population risks. In thisstudy, concerns about passing epilepsy onto a child were associatedwith the decision to have fewer children, even though a favorablematernal and neonatal outcome can be expected in the vast majorityof pregnant WWE [4]. These findings further underscore the un-fortunate theme that some women may be making uninformeddecisions about their families.

4.2. Insufficient information received

The overall poor to moderate knowledge levels reported by womenin studies considered for this review may be explained by the generalfinding that only around 30–75%ofwomen surveyed reported receivinginformation about various issues relating to pregnancy in epilepsy,including pregnancy; family planning; impact of epilepsy medicationon contraception, pregnancy and the unborn baby; and breastfeeding.This means that in general, a sizable proportion of women do not recallbeing given information about these issues. This finding is concerning,given that practice guidelines for the management of WWE promotepreconception counseling [10,15,16], and there is evidence to suggestthat preconception planning and effective AEDmanagement can reducethe risks of adverse pregnancy outcomes [12,13]. Given that a clearmajority (65–76%) of the women in Crawford and Hudson's [40] study

wanted pregnancy-related information either at diagnosis or atleast well in advance of choosing an AED or planning pregnancy, thissuggests that the information needs of many WWE are not currentlybeing met.

In fact, although the impact of patient characteristics on knowledgehas rarely been studied, available data from studies conducted in NorthAmerica show that WWE from ethnic minority backgrounds and withlower levels of education may be at risk for having particularly lowlevels of knowledge [30,31]. Future research is needed to highlight theinformational needs of these specific subgroups.

Two studies included in this review suggested a preference amongmany women for more information, particularly regarding the risks ofepilepsy medication affecting the unborn child (87%), and amongyounger women [36,40]. Furthermore, the majority of women in onesurvey wanted the latest information, even if the data were incomplete[40]. This finding speaks to both the desperation and plight of manyWWE taking relatively new AEDs, for whom insufficient research existsto discount with confidence the risk of adverse outcomes associatedwith their epilepsy medication(s).

Younger women and those planning children in the next few yearshad received significantly more information – up to double in somestudies – than older women regarding pregnancy, birth control, andfolic acid [36,39,40]. However, in one study, 20% of those planningchildren in the near future still reported not having received anyinformation about pregnancy [39].

Information provision regarding the importance of vitamin K wasparticularly poor, with two studies finding that only 11% recalledbeing told about prenatal vitamin K supplementation [33,40]. Giventhat recent practice guidelines for the management of WWE duringpregnancy report insufficient evidence to support or refute the benefitsof prenatal vitamin K supplementation [10], and babies exposed toenzyme-inducing AEDs in utero routinely receive vitamin K at delivery(as for all newborns), it is perhaps not surprising that health-careprofessionals do not oftenmake recommendations about taking vitaminK prenatally. These explanations may account for why no studiesincluded in this review surveyed women's knowledge about prenatalvitamin K supplementation. Similarly, no studies addressed women'sknowledge levels about the consequences of breastfeeding during AEDuse, most likely due to a lack of consensus in the literature on thisissue. Still, it would appear worthwhile to investigate women'sperceptions of the safety of breastfeeding during AED therapy toprevent inaccurate risk perceptions, which may lead some women toavoid breastfeeding unnecessarily.

Indeed, the risks associated with inadequate counseling of womenwith epilepsy regarding pregnancy-related issues are significant. AGerman questionnaire study of WWE found that around every fifthwoman (18%) stopped or reduced antiepileptic medication duringpregnancy without consulting their doctor, risking potential con-sequences of poorly controlled seizures for both mother and baby[45]. Around 40% of 87 women who consciously abstained from havingchildren in this study cited teratogenicity concerns of AEDs among theirreasons, despite the findings that the vastmajority ofWWE give birth tobabies without congenitalmalformations [4]. Fairgrieve et al. found thatmore than half of 199 pregnancies in WWE were unplanned, including27 to women who reported oral contraceptive failure [37]. Furtherpotentially preventable consequences of inadequate counseling includeunplanned pregnancy and reduced seizure control due to AED-hormonal contraceptive interactions, increased risk of congenital mal-formations and decreased neurodevelopmental outcomes associatedwith some AEDs, and poor seizure control due to the metabolic impactof pregnancy on AEDs [42,46,47].

4.3. Explanations for inadequate knowledge and information provision

It is clear from the findings presented in this review that WWEdemonstrate low levels of knowledge about epilepsy-related risk factors

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associated with pregnancy and childbirth. What is less clear are thebarriers to WWE receiving and retaining this information. Severalexplanations are considered in light of the review findings.

There is some research to suggest that inadequate patientknowledge may reflect inadequate physician knowledge of specialissues in the care of WWE in relation to pregnancy [48,49]. Thisargument is supported by evidence that women are more likely toinitiate conversations about pregnancy and birth control than theirhealth-care professional [36]. As Metcalfe et al. [30] note, a lack ofscientific knowledge regarding the impact of epilepsy and epilepsymedications on pregnancy may explain physician reticence.

Furthermore, WWE may not always recall information provided tothem by health-care professionals. For example, a review of the hospitaland general practice notes of 25 women who denied having receivedpreconceptional counseling showed that 32% had been counseled [37].Patients with epilepsy are also at an increased risk of specific cognitivedeficits, such as problems with memory and attention, which, in turn,could impact uptake and retention of information [50,51]. Moreover,seizures themselves and side effects of treatments such as AEDs andepilepsy surgery may not only interfere with the formation of newmemories but also compromise already established memory stores[52–54]. Together, this suggests the need for information consolidationover consecutive appointments with health-care professionals or simplerpresentation of informational material. The format of informationdelivery may also contribute to the likelihood of whether information issought and retained by WWE. Although women in studies included inthis review endorsed physicians as main sources of pregnancy-relatedinformation, one study found that women were twice as likely to preferthat informationwas provided in a written format such as a leaflet ratherthan through a conversation with a health-care professional [40]. Futureresearch may investigate the comparative efficacy of written health-promotion materials, verbal physician advice, or a combination of thetwo on knowledge levels and pregnancy outcomes.

The finding that women seek pregnancy-related information frommultiple sources may increase the likelihood of receiving conflictingadvice or diluting the evidence-based information provided byphysicians. Furthermore, receiving advice from friends and family, theInternet, or various media, as reported by up to 44% of women in theincluded studies [36,38,39,41], may lead to unreliable or out-of-dateinformation being regarded by WWE as fact. However, findingsregarding sources of information in this review are far from conclusive,given the inconsistency of sources cited across studies and theconfounding nature of the sampling methodology (e.g., women whoparticipated in online surveys may be more likely to cite the Internetas an information source).

4.4. Limitations of included studies

Several methodological limitations inherent in the availableliterature should be acknowledged, since they render preliminaryconclusions. Of particular note is that only a small number of studiesaddressed each separate issue associated with epilepsy and pregnancy(e.g., prenatal vitamin K use and safety of breastfeeding during AEDtherapy), limiting conclusions.

All 12 studies used survey methodology. However, women'sknowledge or the information they received about a particular topicwas often assessed with a single, broad question, precluding an in-depth understanding of the quality or breadth of this knowledge orinformation. Furthermore, many studies used ambiguous terms whenassessing knowledge or information received, meaning it was oftenunclear whether or not “pregnancy” referred to epilepsy-specificconsiderations associated with pregnancy. Studies that adopted anarrower focus [31] or employed more specific questions [30] wereable to report a clearer picture about the knowledge of WWE. Futureresearch would benefit from the use of more comprehensive survey

instruments to further elucidate the level of knowledge and experienceof WWE, in order to identify areas of intervention.

For the pregnancy-related issues considered, all but two studies[35,36] used different assessment questions. Two surveys weredeveloped based on qualitative research with WWE [32,39], and onestudy piloted a questionnaire on six people with epilepsy [34]. Theremaining surveys had not been formally validated or tested forreliability. Future research should, therefore, focus on developing well-validated and reliable survey instruments before large-scale studiesare implemented, such as those that are available in the cancerliterature (e.g., [55–57]).

As previously noted, the overall external validity of included studieswas relatively poor. Many studies recruited highly selective samples,such as patrons of a teratogen-toxicant information service [41], visitorsto a health and medical information website [36], or members ofepilepsy associations [32,39,40]. As a result, generalizability of thesamples is unclear, particularly because medical status was based onself-report in samples drawn from patient organizations. Furthermore,only one study explicitly noted consecutive sampling [30], with theremainder using a convenience sample.

The quality of reporting in the studies reviewed was generallyadequate. However, the majority of the studies provided insufficientinformation about participant characteristics. This makes it difficult todetermine the influence of sample biases, understand the knowledgelevels and information needs of certain subgroups of women, orcompare findings between studies. Providing more detailed samplecharacteristics, including participants' epilepsy syndrome, type andfrequency of seizures, level of seizure control, details of antiepilepticdrug use, and motherhood decision-making status as well associoeconomic status and education level, would therefore appear tobe an important improvement for future studies.

4.5. Limitations of the review

Although this reviewwas conducted in a systematic way, limitationsremain. It is possible that the search strategy employed in this reviewwas not completely exhaustive. For example, including only Englishlanguage articles may have resulted in publication bias. Furthermore,additional terms (e.g., “women”, “seizures”, and “malformations”) mayhave strengthened the search strategy. However, given thecomprehensive nature of the search strategy used, it is consideredunlikely that any key studies were omitted. The review methodologycould have been also improved by having two or more reviewersabstract the data from the included studies. Finally, because of thelimited number of studies and the heterogeneity in survey questionsused, it was not possible to perform meta-analyses, precluding moreprecise estimates of women's levels of knowledge, information needs,and the amount of information received.

4.6. Conclusions

For WWE, the reproductive choice is complex. Women needaccurate information tailored to their individual circumstances inorder to make informed decisions about their families. The conclusionsfrom this systematic review highlight that WWE have awareness, butlimited knowledge, of key issues regarding pregnancy and childbirth.Many women indicated that they received insufficient information,and evidence suggests a preference for receiving information early –

at diagnosis or well before choosing an AED or contemplatingpregnancy – and in written form. Furthermore, when asked, manywomen report that they have not been given crucial informationregarding the importance of preconception planning, how epilepsycan impact on pregnancy and vice versa, or epilepsy medications andtheir possible adverse effects. Clearly, it is possible that women aregiven the information and forget it, but, nonetheless, the result is therisk of women making uninformed decisions about pregnancy.

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Further research is needed to investigate the barriers to WWEreceiving and retaining appropriate information. It is important thatfuture research draws on representative populations of WWE, usesvalidated and reliable measures that enable a thorough assessment ofwomen's specific knowledge levels and information needs, and exploresthe importance that women attribute to various sources of information.In addition, research that investigates the acceptability and efficacy ofcomparative methods of information delivery, such as written health-promotion materials, verbal physician advice, or a combination of thetwo, is required in order to best inform WWE about pregnancy-related issues and optimize positive pregnancy outcomes.

Acknowledgments

Professor Louise Sharpe is supported by a National Health ResearchCouncil of Australia Senior Research Fellowship. Dr. Suncica Lah issupported by The University of Sydney Thompson Fellowship.

References

[1] Pennell PB. The importance of monotherapy in pregnancy. Neurology 2003;60:S31–8.

[2] Kelly TE. Teratogenicity of anticonvulsant drugs. I: review of the literature. Am JMedGenet 1984;19:413–34.

[3] Olafsson E,Hallgrimsson JT, HauserWA, LudvigssonP,GudmundssonG. Pregnancies ofwomenwith epilepsy: a population-based study in Iceland. Epilepsia 1998;39:887–92.

[4] Meador K, Reynolds MW, Crean S, Fahrbach K, Probst C. Pregnancy outcomesin women with epilepsy: a systematic review and meta-analysis of publishedpregnancy registries and cohorts. Epilepsy Res 2008;81:1–13.

[5] Yerby MS, Kaplan P, Tran T. Risks and management of pregnancy in women withepilepsy. Cleve Clin J Med 2004;71(Suppl. 2):S25–37.

[6] Crawford P. Best practice guidelines for the management of women with epilepsy.Epilepsia 2005;46(Suppl. 9):117–24.

[7] National Institute for Health and Care Excellence. The epilepsies: the diagnosis andmanagement of the epilepsies in adults and children in primary and secondarycare. London: National Institute for Health and Clinical Excellence; 2012 CG137.

[8] Pennell PB. Pregnancy in women who have epilepsy. Neurol Clin 2004;22:799–820.[9] Sethi NK, Wasterlain A, Harden CL. Pregnancy and epilepsy—when you're managing

both. J Fam Pract 2010;59:675–9.[10] Harden C, Pennell P, Koppel B, Hovinga C, Gidal B, Meador K, et al. Practice

parameter update: management issues for women with epilepsy—focus onpregnancy (an evidence-based review): vitamin K, folic acid, blood levels, andbreastfeeding. Neurology 2009;73:142–9.

[11] Winterbottom JB, Smyth RM, Jacoby A, Baker GA. Preconception counselling forwomen with epilepsy to reduce adverse pregnancy outcome. Cochrane DatabaseSyst Rev 2008:CD006645.

[12] Betts T, Fox C. Proactive pre-conception counselling for women with epilepsy: is iteffective? Seizure 1999;8:322–7.

[13] Oguni M, Dansky L, Andermann E, Sherwin A, Andermann F. Improved pregnancyoutcome in epileptic women in the last decade: relationship to maternalanticonvulsant therapy. Brain Dev 1992;14:371–80.

[14] Martin PJ, Millac PAH. Pregnancy, epilepsy, management and outcome: a 10-yearperspective. Seizure 1993;2:277–80.

[15] Harden C, Hopp J, Ting T, Pennell P, French J, Hauser W, et al. Practice parameterupdate: management issues for women with epilepsy—focus on pregnancy (anevidence-based review): obstetrical complications and change in seizure frequency.Neurology 2009;73:126–32.

[16] Harden C, Meador K, Pennell P, Hauser W, Gronseth G, French J, et al. Practiceparameter update: management issues for women with epilepsy—focus onpregnancy (an evidence-based review): teratogenesis and perinatal outcomes.Neurology 2009;73:133–41.

[17] Pashley S, O'Donoghue MF. The safety of antiepileptic drug regimens: a qualitativestudy of factors determining the success of counselling women before conception.J Fam Plann Reprod Health Care 2009;35:153–6.

[18] Thompson D, Thomas H, Solomon J, Nashef L, Kendall S. Chronic illness, reproductivehealth andmoralwork:women's experiences of epilepsy. Chronic Illn 2008;4:54–64.

[19] Wallace HK, Solomon JK. Quality of epilepsy treatment and services: the views ofwomen with epilepsy. Seizure 1999;8:81–7.

[20] McAuley JW, Patankar C, Lang C, Prasad M. Evaluating the concerns of pregnantwomen with epilepsy: a focus group approach. Epilepsy Behav 2012;24:246–8.

[21] Prunty M, Sharpe L, Butow P, Fulcher G. The motherhood choice: a decision aid forwomen with multiple sclerosis. Patient Educ Couns 2008;71:108–15.

[22] Prunty M, Sharpe L, Butow P, Fulcher G. The motherhood choice: themes arising in thedecision-making process for women with multiple sclerosis. Mult Scler 2008;14:701–4.

[23] Meade T, Sharpe L, Hallab L, Aspanell D, Manolios N. Navigating motherhoodchoices in the context of rheumatoid arthritis: women's stories. MusculoskeletalCare 2012;11:73–82.

[24] Smeltzer SC. Reproductive decision making in women with multiple sclerosis.J Neurosci Nurs 2002;34:145–57.

[25] Downs SH, Black N. The feasibility of creating a checklist for the assessment of themethodological quality both of randomised and non-randomised studies of healthcare interventions. J Epidemiol Community Health 1998;52:377–84.

[26] Ferro MA, Speechley KN. Depressive symptoms among mothers of children withepilepsy: a review of prevalence, associated factors, and impact on children.Epilepsia 2009;50:2344–54.

[27] Carville SF, Arendt-Nielsen S, Bliddal H, Blotman F, Branco JC, Buskila D, et al. EULARevidence-based recommendations for the management of fibromyalgia syndrome.Ann Rheum Dis 2008;67:536–41.

[28] Olivo SA, Macedo LG, Gadotti IC, Fuentes J, Stanton T, Magee DJ. Scales to assess thequality of randomized controlled trials: a systematic review. Phys Ther 2008;88:156–75.

[29] Wang T, Collet J-P, Shapiro S, Ware MA. Adverse effects of medical cannabinoids: asystematic review. Can Med Assoc J 2008;178:1669–78.

[30] Metcalfe A, Roberts JI, Abdulla F, Wiebe S, Hanson A, Federico P, et al. Patientknowledge about issues related to pregnancy in epilepsy: a cross-sectional study.Epilepsy Behav 2012;24:65–9.

[31] Pack AM, Davis AR, Kritzer J, Yoon A, Camus A. Antiepileptic drugs: are womenaware of interactions with oral contraceptives and potential teratogenicity?Epilepsy Behav 2009;14:640–4.

[32] Bagshaw J, Crawford P, Chappell B. Problems that mothers' with epilepsy experiencewhen caring for their children. Seizure 2008;17:42–8.

[33] Bell GS, Nashef L, Kendall S, Solomon J, Poole K, Johnson AL, et al. Informationrecalled by women taking antiepileptic drugs for epilepsy: a questionnaire study.Epilepsy Res 2002;52:139–46.

[34] Chappell B, Smithson WH. Patient views on primary care services for epilepsy andareas where additional professional knowledge would be welcome. Seizure1998;7:447–57.

[35] Kochen S, Salera C, Seni J. Pregnant women with epilepsy in a developing country.Open Neurol J 2011;5:63–7.

[36] Vazquez B, Gibson P, Kustra R. Epilepsy and women's health issues: unmet needs—survey results from women with epilepsy. Epilepsy Behav 2007;10:163–9.

[37] Fairgrieve SD, Jackson M, Jonas P, Walshaw D, White K, Montgomery TL, et al.Population based, prospective study of the care of women with epilepsy inpregnancy. BMJ (Int Ed) 2000;321:674–5.

[38] Kampman MT, Johansen SV, Stenvold H, Acharya G. Management of women withepilepsy: are guidelines being followed? Results from case-note reviews and apatient questionnaire. Epilepsia 2005;46:1286–92.

[39] Crawford P, Lee P. Gender difference in management of epilepsy: what women arehearing. Seizure 1999;8:135–9.

[40] Crawford P, Hudson S. Understanding the information needs of womenwith epilepsyat different lifestages: results of the ‘Ideal World’ survey. Seizure 2003;12:502–7.

[41] Ito S, Moretti M, LiauM, Koren G. Initiation and duration of breast-feeding inwomenreceiving antiepileptics. Am J Obstet Gynecol 1995;172:881–6.

[42] Adab N, Tudur Smith C, Vinten J, Williamson PR, Winterbottom JB. Commonantiepileptic drugs in pregnancy in women with epilepsy. Cochrane Database SystRev 2004:CD004848.

[43] Banach R, Boskovic R, Einarson T, Koren G. Long-term developmental outcome ofchildren of women with epilepsy, unexposed or exposed prenatally to antiepilepticdrugs: a meta-analysis of cohort studies. Drug Saf 2010;33:73–9.

[44] Helbig KL, Bernhardt BA, Conway LJ, Valverde KD, Helbig I, Sperling MR. Genetic riskperception and reproductive decisionmaking among peoplewith epilepsy. Epilepsia2010;51:1874–7.

[45] May TW, PfafflinM, Coban I, Schmitz B. Fears, knowledge, and need of counseling forwomen with epilepsy. Results of an outpatient study. Nervenarzt 2009;80:174–83.

[46] Crawford P, Appleton R, Betts T, Duncan J, Guthrie E, Morrow J. Best practiceguidelines for the management of women with epilepsy. The Women with EpilepsyGuidelines Development Group. Seizure 1999;8:201–17.

[47] Meador KJ, Baker GA, Browning N, Cohen MJ, Bromley RL, Clayton-Smith J, et al.Effects of fetal antiepileptic drug exposure: outcomes at age 4.5 years. Neurology2012;78:1207–14.

[48] Long L, Montouris G. Knowledge of women's issues and epilepsy (KOWIE-II): asurvey of health care professionals. Epilepsy Behav 2005;6:90–3.

[49] Morrell MJ, Sarto GE, Shafer PO, Borda EA, Herzog A, Callanan M. Health issues forwomen with epilepsy: a descriptive survey to assess knowledge and awarenessamong healthcare providers. J Womens Health Gend Based Med 2000;9:959–65.

[50] McCagh J, Fisk JE, Baker GA. Epilepsy, psychosocial and cognitive functioning.Epilepsy Res 2009;86:1–14.

[51] Jokeit H, Schacher M. Neuropsychological aspects of type of epilepsy and etiologicalfactors in adults. Epilepsy Behav 2004;5(Suppl. 1):S14–20.

[52] Loring DW, Marino S, Meador KJ. Neuropsychological and behavioral effects ofantiepilepsy drugs. Neuropsychol Rev 2007;17:413–25.

[53] Butler CR, Zeman AZ. Recent insights into the impairment of memory in epilepsy:transient epileptic amnesia, accelerated long-term forgetting and remote memoryimpairment. Brain 2008;131:2243–63.

[54] Meador KJ. Cognitive outcomes and predictive factors in epilepsy. Neurology2002;58:S21–6.

[55] Bonevski B, Sanson-Fisher R, Girgis A, Burton L, Cook P, Boyes A, et al. Evaluationof an instrument to assess the needs of patients with cancer. Cancer2000;88:217–25.

[56] Hodgkinson K, Butow P, Hunt GE, Pendlebury S, Hobbs KM, Lo SK, et al. Thedevelopment and evaluation of a measure to assess cancer survivors' unmetsupportive care needs: the CaSUN (Cancer Survivors' Unmet Needs measure).Psychooncology 2007;16:796–804.

[57] Wen K-Y, Gustafson DH. Needs assessment for cancer patients and their families.Health Qual Life Outcomes 2004;2:11.