Reproductive concerns aWWE.pdf

Epilepsy & Behavior 125 (2021) 108439 Contents lists available at ScienceDirect Epilepsy & Behavior...

Epilepsy & Behavior 125 (2021) 108439 Contents lists available at ScienceDirect Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh Sexual and reproductive health concerns of women with epilepsy beginning in adolescence and young adulthood Laura Kirkpatrick a,⇑, Elizabeth Harrison a, Sonya Borrero b,c, Elizabeth Miller a,b, Yoshimi Sogawa a, Olivia M. Stransky b, Mehret Birru Talabi b,c, Alexandra Urban d, Traci M. Kazmerski a,b a UPMC Children’s Hospital of Pittsburgh, 4401 Penn Avenue, Pittsburgh, PA 15224, United States b Center for Women’s Health Research and Innovation, University of Pittsburgh, 230 McKee Place, Pittsburgh, PA 15213, United States c Department of Medicine, University of Pittsburgh, 1218 Scaife Hall, 3550 Terrace Street, Pittsburgh, PA 15261, United States d Department of Neurology, University of Pittsburgh, 811 Kaufmann Medical Building, 3461 Fifth Avenue, Pittsburgh, PA 15213, United States a r t i c l e i n f o a b s t r a c t Article history: Background: Women with epilepsy (WWE) have potentially unique concerns regarding their sexual and Received 23 July 2021 reproductive health (SRH). Prior studies of WWE have focused narrowly on pregnancy and preconception Revised 9 November 2021 experiences, and have not addressed concerns of nulliparous adolescent and young adult women not Accepted 9 November 2021 actively seeking pregnancy. Methods: We conducted individual semi-structured interviews with WWE 18–45 years of age. We sam- pled to maximize diversity of age and parity, and intentionally included many adolescent and young Keywords: adult nulliparous women not actively planning pregnancy. Interviews broadly addressed participants’ Women with epilepsy Sexual health SRH concerns and experiences. Interviews were audio-recorded and transcribed. Two coders performed Reproductive health qualitative analysis using thematic analysis with deductive and inductive approaches. Adolescence Results: Twenty WWE (median age 23 years, range 18–43 years) completed interviews. Twelve were nul- liparous, six had children, one had a history of miscarriage only, and two were currently pregnant. WWE’s narratives revealed significant concerns about family planning and reproductive health in the context of epilepsy, including: 1) seizures endangering pregnancies and children 2) teratogenic effects of antiseizure medication, 3) heritability of epilepsy, 4) antiseizure medication and epilepsy impacting fertility, and 5) interactions between antiseizure medication and contraception. Conclusion: WWE, including nulliparous adolescent and young adult women who are not actively plan- ning pregnancy, have significant concerns about how their epilepsy interacts with SRH. SRH counseling for WWE should begin during adolescence and be incorporated into the transition process from pediatric to adult healthcare. Insights from WWE may aid in the creation of relevant patient-facing educational resources as well as provider-facing training and tools to meaningfully support the reproductive decision-making of WWE throughout their childbearing years. Ó 2021 Elsevier Inc. All rights reserved. 1. Introduction unmet needs [3–12]. Adolescents and young adults with epilepsy, in particular, report receiving limited SRH counseling and have Women with epilepsy (WWE) have distinct needs related to poor knowledge of SRH and epilepsy [3,4]. Both adult and pediatric sexual and reproductive health (SRH) care, including counseling neurologists demonstrate gaps in knowledge and practices regard- about teratogenic effects of antiseizure medications, seizure con- ing counseling WWE about these topics [5–12]. Previous literature trol during pregnancy, folic acid supplementation, and potential on the experiences of WWE about SRH is limited and largely interactions between antiseizure medications and contraceptives occurred outside of the United States (U.S.) with a focus on the [1,2]. Literature on the SRH care experiences of WWE suggests experiences of WWE related to pregnancies and/or ongoing pre- conception planning [13–19]. ⇑ Corresponding author. To better understand the range of SRH concerns and experi- E-mail addresses: [email protected] (L. Kirkpatrick), harriso- ences of WWE in the U.S., we conducted qualitative in-depth inter- [email protected] (E. Harrison), [email protected] (S. Borrero), Elizabeth.mill- views with adult women with pediatric-onset epilepsy about their [email protected] (E. Miller), [email protected] (Y. Sogawa), [email protected] (O. SRH, including their experiences and decision-making around con- M. Stransky), [email protected] (M.B. Talabi), [email protected] (A. Urban), traception, childbearing, and parenthood. We sought to elicit per- [email protected] (T.M. Kazmerski). https://doi.org/10.1016/j.yebeh.2021.108439 1525-5050/Ó 2021 Elsevier Inc. All rights reserved. L. Kirkpatrick, E. Harrison, S. Borrero et al. Epilepsy & Behavior 125 (2021) 108439 spectives around pregnancy prevention in addition to pregnancy 18 to 19 years old, eleven participants were 20 to 25 years old, one and preconception planning to understand the full spectrum of was 26 to 29 years old, four were 30 to 39 years old, and one was reproductive decision-making by WWE. In addition, we aimed to over 40 years old. Twelve participants were nulliparous, while six understand the perspectives on SRH of nulliparous women who participants had children. One had a history of a miscarriage only, were not actively planning for pregnancy. We were particularly and two were pregnant at the time of the interview (one with her interested in reflections on adolescence and young adulthood, as first child). Fourteen self-identified as Caucasian, while six self- adolescence and young adulthood is generally a time of increased identified as either Black or African-American, and one identified SRH needs, including higher rates of unintended pregnancy and as mixed race. Seven participants were recruited through adver- sexually transmitted infections compared to later adulthood tisements to the Epilepsy Association of Western and Central Penn- [20,21]. sylvania, five were recruited through pediatric neurology clinics, and eight were recruited through adult neurology clinics. Detailed demographic information is described in Table 1, including charac- 2. Methods teristics of participants’ epilepsy and current antiseizure medications. We conducted individual semi-structured interviews by tele- phone with WWE aged 18–44 years who were diagnosed with epi- lepsy prior to age 18 years. Prior to the interviews, we developed 3.2. Themes an interview guide that consisted of questions and probes adapted from prior interview guides used in similar studies exploring SRH We achieved thematic saturation after 12 interviews and con- experiences among people with pediatric-onset chronic diseases, tinued recruitment to ensure diversity by age and parity. We iden- and that was influenced by published literature specific to WWE tified several themes regarding WWE’s concerns regarding their [22–24]. We excluded WWE with insufficient English language SRH, which are summarized below as well as in Table 2. All quoted proficiency to complete a telephone interview or with a diagnosis participants have been assigned pseudonyms. Participants of an intellectual or neurodevelopmental disability, as WWE with reported many SRH-related anxieties beginning as early as adoles- such co-occurring conditions may have different SRH needs, pref- cence or even childhood. erences, and experiences compared with those of typical develop- Theme 1. WWE reported significant concerns about endangering ment. We purposively sampled WWE of various ages and parities their pregnancies and children while having seizures, including injur- to understand how concerns might evolve and differ across age ing a young child, having a miscarriage, or being unable to parent their groups and parity. We chose to interview WWE with pediatric- children. onset epilepsy in order to elicit reflections of WWE about SRH dur- WWE feared endangering their children due to seizures, partic- ing adolescence and young adulthood. ularly in the newborn period. Several participants expressed fear We recruited participants either by email advertisement via the and anxiety, as well as concurrent guilt and shame about the pos- Epilepsy Association of Western and Central Pennsylvania or by in- sibility of harming their newborns if they were to have a seizure. clinic recruitment through neurologists or epileptologists at pedi- As Lisa (23 years old, nulliparous) said, ‘‘If you’re holding your atric or adult neurology clinics within a large academic medical baby, and if you have a seizure, you don’t feel it coming on, and system in Western Pennsylvania. Participants provided verbal you could fall. You could hurt yourself. You could hurt the baby. informed consent. Interviews occurred from August through You could even kill the baby if you fall on top of it. I’m not sure December 2020. Interviews lasted between 30 to 60 minutes and if this has ever happened, but there could be like a murder charge were audio-recorded and transcribed verbatim with identifiable against you. You could end up becoming super, super depressed, information redacted. LK and EH, who are cisgender female pedi- and blaming yourself for killing your child, and just being stupid atric neurologists, performed all interviews. Participants received and selfish, and end up committing suicide.” a $50 gift card for their time. Many participants reported fears of seizures during pregnancy Prior to formal qualitative analysis of the transcripts, LK devel- leading to miscarriages or stillbirths. Misty (31 years old, one child) oped a preliminary codebook based on the interview guide. Using stated that during her pregnancy, ‘‘I was already high-risk with the Dedoose software (SocioCultural Research Consultants, Los Ange- epilepsy, but I would be really high-risk because I could just drop les, California), two independent coders (LK, EH) reviewed and and have a seizure at any point in my pregnancy, and something coded all transcripts following Braun and Clarke’s thematic analy- could happen to my baby. Things like that were always on my sis approach. They referred to the preliminary codebook and mind.” Similarly, Madison (20 years old, nulliparous), said about created additional codes as needed. They convened on five occa- the possibility of pregnancy, ‘‘I am scared, to be honest. I’m scared sions to discuss their coding, resolve any discrepancies, and estab- that if I want to get pregnant—and I haven’t had a seizure [in eight lish new codes using a consensus coding approach. They proceeded months]. But what if I would get pregnant. Once I get pregnant, I iteratively until a final codebook was developed. TMK, a senior co- have one seizure. One seizure can hurt you because you don’t know investigator who is a pediatric subspecialist and health services if you’re gonna land on your stomach and hurt the child. One researcher, was available for consultation and for adjudication of wrong thing can end it—end up killing it.” any discrepancies during this process. The coders analyzed all tran- Several participants raised concerns about being unable to scripts using the final codebook and evaluated themes and selected parent due to seizures. Lydia (20 years old, currently pregnant representative quotations. The University of Pittsburgh Institu- with her first child) said, ‘‘I feel like having seizures, being in tional Review Board deemed this study exempt the hospital, [the] risk of dying while having a seizure can be (STUDY#19040336). very tough ’cause you never know when you could go with hav- ing them, and knowing that your child is by herself without one 3. Results of her parents.” This sentiment was echoed by Sadie (20 years old, nulliparous), who expressed, ‘‘I have fears that, after I have 3.1. Sample characteristics kids, my seizures may change. Instead of having—being regu- lated on medication, maybe my medicine stops working for Twenty WWE completed interviews. Participants’ ages ranged me, and then I start having seizures and I’m not able to properly from 18 to 43 years (median age 23 years). Three participants were care for my kids.” 2 L. Kirkpatrick, E. Harrison, S. Borrero et al. Epilepsy & Behavior 125 (2021) 108439 Table 1 Participant demographics. Pseudonym Age Race/ethnicity Parity Seizure Age of onset Medications Recruitment source types Melissa 31 Caucasian History of miscarriage GTC* School age Levetiracetam Epilepsy Association of Western and Central Lamotrigine Pennsylvania Sadie 20 Caucasian nulliparous Myoclonic Adolescence Levetiracetam Epilepsy Association of Western and Central GTC Pennsylvania Mary 19 Black/African nulliparous GTC School age Lacosamide Epilepsy Association of Western and Central American Clonazepam Pennsylvania Nadine 24 Caucasian nulliparous Focal School age Levetiracetam Epilepsy Association of Western and Central Pennsylvania Barbara 22 Caucasian nulliparous Absence School age Clonazepam Epilepsy Association of Western and Central GTC Pennsylvania Focal Sarah 21 Caucasian nulliparous Myoclonic Adolescence Levetiracetam Epilepsy Association of Western and Central GTC Pennsylvania Jasmine 23 Black/African nulliparous Focal School age Oxcarbazepine Epilepsy Association of Western and Central American Lamotrigine Pennsylvania Kayla 18 Caucasian nulliparous GTC School age Levetiracetam Pediatric neurology clinic Ananda 20 Mixed race nulliparous GTC Adolescence Levetiracetam Pediatric neurology clinic Aubrey 19 Caucasian nulliparous Focal Adolescence Oxcarbazepine Pediatric neurology clinic Misty 31 Caucasian One child Focal Toddler Levetiracetam Pediatric neurology clinic# GTC Madison 20 Caucasian nulliparous GTC School age Levetiracetam Pediatric neurology clinic Marissa 29 Caucasian Two children Absence Adolescence Levetiracetam Adult neurology clinic GTC Lamotrigine Lydia 20 Caucasian Pregnant with first child GTC School age Lamotrigine Adult neurology clinic Lisa 23 Black/African nulliparous Focal Adolescence Brivaracetam Adult neurology clinic American Vivica 21 Caucasian nulliparous GTC School age Levetiracetam Adult neurology clinic Lamotrigine Topiramate Ashley 32 Caucasian Two children Focal School age Lamotrigine Adult neurology clinic Shavonne 23 Black/African Two children, pregnant with GTC School age Levetiracetam Adult neurology clinic American third child Alexis 39 Black/African Two children Focal School age Levetiracetam Adult neurology clinic American Jennifer 43 Caucasian Two children, one abortion GTC Adolescence Topiramate Adult neurology clinic *Generalized tonic clonic. # Parent of a patient seen in pediatric neurology clinic. Fears about seizures endangering participants’ pregnancies or a healthy pregnancy to term. For many participants, these concerns children were highly prevalent among young adults (aged 20– began during adolescence or even childhood. Several participants 26 years) in the sample regardless of parity status, though less had exaggerated or inaccurate ideas about the extent of the terato- common among adolescent participants (aged 18–19 years) or genicity of antiseizure medications. As Jasmine said (23 years old, among participants’ reflections of their concerns during adoles- nulliparous), ‘‘It makes me worry, like how it’s going to be possi- cence specifically. There were two exceptions, both of whom had ble—because of how most antiepileptics are teratogenic. So, how given birth at or before age 20. One participant (Shavonne, 23 years am I going to—is it possible for me to carry to term a healthy old, two children, pregnant with third child) reported such anxi- baby?” Jasmine stated that these anxieties began for her during eties in conjunction with her adolescent pregnancy at age 18 years. adolescence when she received counseling on this topic from her Another participant (Alexis, 39 years old, two children, first child at neurologist. 20 years old) reported having such concerns during adolescence Similarly, Madison (20 years old, nulliparous) expressed fears and reading books to research how seizures during pregnancy about healthcare counseling she had received during adolescence can adversely impact the developing fetus. No adolescents, or older by her neurologist regarding her medication, levetiracetam (which individuals reflecting on adolescence, recalled anxieties about an is not currently thought to be significantly teratogenic at doses inability to parent their children due to seizures as a major commonly used in clinical practice) , ‘‘I was pretty scared concern. ’cause they said that if I were to stay on the high dosage that the A few participating WWE also reported fears about obstetrical pregnancy could not go through. The baby could die inside. And complications of pregnancy impacting their own health rather than that pretty much scared me. I wouldn’t want a human being that that of their pregnancies or children. As Kayla (18 years old, nulli- I’m giving birth to die inside me and not get to see the world.” parous) said, ‘‘Is it okay for me to go through pregnancy? Is it Another participant, Melissa (age 31, history of a miscarriage), gonna harm me?...if there’s any issues I would have, if I’m—when described having fears about teratogenic effects of antiseizure I go to give birth or while I’m pregnant? [Those] would be the type medications as early as ten years old. of things I would want to know.” These concerns were present in For some participants, concerns about balancing teratogenic the sample, though relatively uncommon, with no obvious pattern risk with seizure control influenced their reproductive decision- of linkage to participants’ ages. making. As Nadine (24 years old, nulliparous) contemplated, Theme 2. WWE reported significant concerns about teratogenic ‘‘What is the safest way to do it? ’Cause obviously not being on effects of antiseizure medications. medication [to avoid teratogenic effects]...my doctor told me that Participating WWE also expressed fears of teratogenic effects of having a seizure while you’re pregnant is very, very bad for the antiseizure medications, potentially leading to an inability to carry baby, so just straightening all that out and what drug I’m taking 3 L. Kirkpatrick, E. Harrison, S. Borrero et al. Epilepsy & Behavior 125 (2021) 108439 Table 2 Themes and illustrative quotations regarding WWE’s concerns about SRH. Theme Illustrative quotations Theme 1. WWE reported significant concerns about endangering their pregnancies and children through having seizures ‘‘Dropping your baby... that was scary...really being stressed about that and worried. Just have someone there or someone to call or, you know, things like that- play it safe and come up with different options. If I feel like I’m going to have one [a seizure], make sure the baby is in a safe spot—or in their crib. Or have them swaddled so nothing can really happen and-and things like that. Just knowing how to do for your child if you feel like one’s [a seizure is] coming on, and you know, there’s no one around and nothing, really, you can do. You know, just making sure they’re in a safe spot because, I mean, you’re gonna come out of it.” – Marissa, 29 years old, two children ‘‘If the epilepsy is uncontrolled, then you can’t really a hundred percent provide security ’cause having a seizure kinda puts you down for the count, so you wouldn’t wanna be raising a child or especially a baby or little one ’cause if you were having a seizure and that baby gets into something it shouldn’t, then that could be dangerous.” – Nadine, 24 years old, nulliparous Theme 2. WWE reported significant concerns about teratogenic effects of antiseizure medications ‘‘I have fears that, like, the medicine I take will cause, like, birth defects.” – Sadie, 20 years old, nulliparous Theme 3. WWE expressed uncertainty about having children due to fears about the heritability of epilepsy. ‘‘Not that I have a problem with it, but I don’t really want my kids to have epilepsy, which I know is kind of in a way unavoidable...I just don’t want them to have problems because of it, like anything at all. I just kinda want them to be happy and healthy if I’m gonna have kids.” – Mary, 19 years old, nulliparous /Theme 4. WWE were concerned that their antiseizure medication or epilepsy would cause infertility. ‘‘When I was younger, I-I thought, yes, I-I wanna have kids. And even when I found out that there’s a plethora of-of antiseizure medications that may limit your ability to conceive, I-I didn’t really get upset but I-I was, like, ‘Oh, that’s scary.’” – Barbara, 22 years old. nulliparous Theme 5. WWE fear interactions between their antiseizure medication and contraception. ‘‘There was only certain birth controls I can take [due to medication interactions with antiseizure medication]. That’s why I never put—that’s why I never got on them or took the stress levels to find the right one and stuff like that.” – Lydia, 20 years old, pregnant with first child and what’s the safest for the baby. So if there is no safe measure, tility], like, maybe twice or so. And asking about if it’s messing up then that definitely does impact whether I would have children my reproductive organs. [The neurologists’] answers were not or not, or want to have children.” proper. To this day, I still don’t really know if [the medications Theme 3. WWE expressed uncertainty about having children due are] messing up, or if they’ve messed up now, my organs - repro- to fears about the heritability of epilepsy. ductive organs.” Concerns about epilepsy and fertility were among A majority of participants expressed concerns about the possi- the most common anxieties among nulliparous women, including bility that they might give birth to children with epilepsy due to adolescent women (aged 18–19 years) in the study, as well as the risk of genetic transmission. These concerns at times influ- among older participants’ reflections on their SRH concerns during enced or impacted their reproductive decision-making. As Vivica adolescence. (21 years old, nulliparous) said regarding the possibility of having Theme 5. WWE fear interactions between their antiseizure medi- children, ‘‘You always have in the back of your mind questioning, cation and contraception. ‘‘Should I?” That little question. ‘‘Should I?” Just because you—be- Many participants also reported concerns about adverse inter- cause from my experience, we don’t know why I have this, so we’re actions between their antiseizure medications and contraception, not sure if it’s genetic or not.” which at times impacted their contraceptive decision-making. Sev- Misty (31 years old, one child), whose only child has a diagnosis eral were concerned about potential adverse interactions of anti- of epilepsy, said, ‘‘I would love to give my son a sibling, but I don’t seizure medications and contraceptives that have not been think I could give him one naturally. I know that I could get preg- reported, for example between levetiracetam and hormonal con- nant, but I don’t think I would want to risk bringing another child traception. As Ananda (age 20, nulliparous) said, ‘‘The only thing into a long suffering [related to epilepsy].” These concerns were that I really hear is, like, which birth control is gonna interact with highly prevalent across age groups in the study regardless of parity my [levetiracetam] badly or not. It’s not so much my epilepsy. It’s status, including among adolescents, as well as among older partic- the medication side of it all... so trying to find out which stuff will ipants’ reflections on their SRH concerns during adolescence. go safe with my [levetiracetam]... so, um, so the birth control I Theme 4. WWE were concerned that their antiseizure medication currently have is Nexplanon.” or epilepsy would cause infertility. Another participant (Kayla, 18 years old, nulliparous) described Several participating WWE reported concerns that their anti- eschewing methods of contraception other than condoms due to seizure medications would lead to infertility, often due to misinfor- concerns about medication interactions with levetiracetam. She mation obtained from online sources. Sadie (20 years old, said, ‘‘I’m apprehensive to start new meds ’cause I worry about nulliparous) described her experience of reading online about fer- any interactions [between contraception and antiseizure medica- tility concerns related to antiseizure medication during her adoles- tion].” Concerns about interactions between antiseizure medica- cence, leading to concerns persisting to present day: ‘‘I would tion and birth control were expressed in the sample mainly by definitely say, even if you were my age when you got diagnosed, nulliparous adolescents (aged 18–19 years) and young adults (aged like 16, I think you [doctors] should definitely bring up the fact that 20–26 years) who were not actively planning for pregnancy. some medications can alter the percentage of you being able to get pregnant. Because, when I found out [online] that it was gonna be 4. Discussion tougher for me to have kids, the possibility of having it be tougher, I did get kind of concerned because, like I said, I’ve always wanted Adult WWE of childbearing age expressed a range of fears, anx- to have kids.” Sadie reported a history of taking levetiracetam, but ieties, and concerns about their SRH. Prior research largely focused there is not a known or reported association between levetirac- on pregnancy and preconception concerns of WWE who had expe- etam and female infertility based on current medical literature. rienced pregnancy or were planning for pregnancy [13–19]. Our Jasmine (23 years old, nulliparous) reported having similar con- study also explored patients’ perspectives about contraception, fer- cerns about her medication, oxcarbazepine, beginning around 15 tility, and heritability of epilepsy, which have rarely been reported to 16 years of age. When she asked her neurologist about this con- in other studies. In addition, our study describes that adolescent cern, she received an unsatisfying explanation: ‘‘I asked about [fer- and young adult nulliparous WWE who are not actively planning 4 L. Kirkpatrick, E. Harrison, S. Borrero et al. Epilepsy & Behavior 125 (2021) 108439 for pregnancy have a broad range of SRH concerns related to epi- Novel healthcare delivery strategies may be needed to facilitate lepsy, which impact their decisions about pregnancy and preg- improved SRH counseling by healthcare providers for WWE. nancy prevention. Consequently, SRH counseling by healthcare Within neurology visits, options might include delegating SRH professionals about SRH and epilepsy ideally ought to begin during counseling to non-physician staff or conducting a co-located clinic adolescence, to ensure that adolescent and young adult WWE’s with a neurologist and reproductive health provider. Improved col- concerns are addressed in a timely manner and that they are able laboration between neurologists, primary care providers, and to make decisions about their reproductive health and family plan- reproductive health providers is also needed to best serve the ning based on accurate medical information. SRH needs of WWE. Strategies might include algorithms/guidelines We found that concerns about contraception were most preva- on SRH and epilepsy, co-management plans among different spe- lent among younger WWE who were not actively planning for cialties, electronic consultations between specialties, or telemen- pregnancy, while fears of seizures endangering pregnancy and chil- toring programs between specialties such as Project Extension for dren were less common in adolescence. Many participants Community Healthcare Outcomes in which neurologists mentored reported having fears about teratogenesis, heritability of epilepsy, primary care practices in epilepsy care [34,35]. and fertility starting in adolescence. Surveys of U.S. adults previ- There are several limitations of this study. One is that partici- ously identified concerns about heritability of epilepsy, but these pants were recruited from a single region of the U.S., and epilepsy concerns were not previously identified among adolescents before centers nationwide may vary in their approaches to SRH. In addi- age 18 years [27–28]. Such concerns were common in our study tion, qualitative methodology aims for in-depth exploration of among participants’ reflections on their experiences during adoles- perspectives from a small sample, and is therefore inherently lim- cence. Concerns about heritability expressed by WWE in the study ited in generalizability. The findings might also be influenced by may support better access to genetic counseling and/or genetic selection bias, as WWE most interested or concerned about the testing to help people with epilepsy make more informed decisions topic may have volunteered to participate. Finding might also about family planning be limited by recall bias of participants. We did not screen partic- To our knowledge, fears about infertility among WWE have not ipants for or inquire about mental health disorders, and it is previously been reported, but were prevalent in our sample. Likeli- therefore not known whether the degree of anxiety expressed hood of achieving pregnancy, time to pregnancy, and live birth rates in this study might reflect anxiety disorders, which commonly have been shown to be similar among WWE and women without co-occur with epilepsy. Our study did not address the expe- epilepsy who have not been diagnosed with a reproductive disorder riences and perspectives of men with epilepsy, people with intel- such as Polycystic Ovarian Syndrome (PCOS). However, rates of lectual disabilities co-occurring with epilepsy, or parents of PCOS, which is associated with infertility, have also been shown to children with epilepsy, all of which may be topics for future be increased among WWE compared with women without an epi- inquiry. As is true of all qualitative studies, the positionality of lepsy diagnosis [30,31]. Enzyme-inducing antiseizure medication the study team, such as gender, parity, educational attainment, use has also been associated with greater time to pregnancy com- and profession, may have implicitly impacted both interview pared with other antiseizure medication use. While there is evi- interactions and the data interpretation. dence that providers can provide reassurance to many WWE about their ability to become pregnant and give birth, providers may con- sider screening WWE for conditions that impact fertility that may 5. Conclusion co-occur with epilepsy such as PCOS. They may also consider coun- seling about the potential impact of enzyme-inducing antiseizure WWE, including those under the care of pediatric neurologists, medications on fertility where applicable. expressed a variety of significant concerns about their SRH. Find- In this study, patients’ reliance on potentially inaccurate online ings from this study highlight the need to address general and information contributed to anxiety and fear about SRH. One way to epilepsy-specific SRH concerns early in adolescence and integrate address the information gaps expressed by patients is through the SRH into the transition process from pediatric to adult healthcare. initiation of comprehensive SRH counseling of WWE beginning in Results may inform development of patient education materials adolescence. As many patients’ anxieties about this subject started and healthcare interventions to improve SRH knowledge and in adolescence, pediatric neurologists may need to proactively ini- awareness among WWE of childbearing age. tiate the topic with adolescent females with epilepsy, including reproductive goals assessment, contraceptive counseling, pre- Declaration of Competing Interest pregnancy counseling, and information (as well as emotional sup- port) about the many topics of concern identified in this study. The authors declare that they have no known competing finan- Additionally, the development of evidence-based online resources cial interests or personal relationships that could have appeared about SRH for WWE may be necessary to supplement routine to influence the work reported in this paper. patient-provider conversations. Our findings support and expand upon current recommenda- References tions from the Child Neurology Foundation (CNF) and American Academy of Neurology (AAN) [32,33]. However, there is ample evi- Stephen LJ, Harden C, Tomson T, Brodie MJ. Management of epilepsy in dence that the current guidelines are not optimally followed by women. Lancet Neurol 2019;18(5):481–91. either adult or pediatric neurologists [3,5–7,11,12]. The range of Crawford P. Interactions between antiepileptic drugs and hormonal contraception. CNS Drugs 2002;16(4):263–72. concerns expressed by adolescent and young adult WWE in this Manski R, Dennis A. 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