aWWE Counsel sooner Becker.pdf

EPILEPSY CURRENTS C...

EPILEPSY CURRENTS Current Literature in Clinical Research Epilepsy Currents 2022, Vol. 22(5) 300-302 Sexual and Reproductive Health Counseling: ª The Author(s) 2022 Article reuse guidelines: The Sooner the Better sagepub.com/journals-permissions DOI: 10.1177_15357597221098814 journals.sagepub.com/home/epi Danielle A. Becker1 Sexual and Reproductive Health Concerns of Women With Epilepsy Beginning in Adolescence and Young Adulthood Kirkpatrick L, Harrison E, Borrero S, et al. Epilepsy & Behavior. 2021;125:108439. doi:10.1016/j.yebeh.2021.108439. Background: Women with epilepsy (WWE) have potentially unique concerns regarding their sexual and reproductive health (SRH). Prior studies of WWE have focused narrowly on pregnancy and preconception experiences, and have not addressed concerns of nulliparous adolescent and young adult women not actively seeking pregnancy. Methods: We conducted individual semi-structured interviews with WWE 18-45 years of age. We sampled to maximize diversity of age and parity, and intentionally included many adolescent and young adult nulliparous women not actively planning pregnancy. Interviews broadly addressed participants’ SRH concerns and experiences. Interviews were audio-recorded and transcribed. Two coders performed qualitative analysis using thematic analysis with deductive and inductive approaches. Results: Twenty WWE (median age 23 years, range 18-43 years) completed interviews. Twelve were nulliparous, 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 planning 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. parenthood.2 This is one of the first studies to address the need to Commentary discuss these concerns early, even before transitioning to an adult clinic. This is especially important for discussion and initiation of Educating women with epilepsy (WWE) about sexual and folic acid supplementation given adolescence and young adult- reproductive health (SRH) is an important task given that hood are times of increased SHR needs with higher rates of approximately 1.5 million WWE are of child-bearing age in unplanned pregnancy.3 In addition, adolescents and young adults the United States.1 There are many concerns and fears that need to with epilepsy have reported limited resources and counseling be addressed, including how antiseizure medication (ASM) will about SRH and their epilepsy.4,5 Many of these WWE reported impact contraception and fertility. There are also questions having fears and concerns about their SRH as early as 10 years of about heritability of epilepsy and the impact of seizures and age. Lack of these conversations have led to misconceptions and ASMs on pregnancy. Given these concerns, some WWE may misinformation that increase anxiety and result in incorrect not consider having children because they have epilepsy and conclusions about whether a WWE can have a safe pregnancy lack knowledge or education surrounding contraception, and deliver a healthy baby. Significant advances have been made preconception planning, and reproductive decision-making.2 that have improved maternal and child outcomes. Currently, the The article reviewed in this commentary took on the task to majority of WWE have routine pregnancies and healthy babies. better understand SRH concerns and experiences of WWE by conducting in-depth interviews about their experiences and 1 decision-making around contraception, childbearing and Case Western Reserve University, USA Creative Commons Non Commercial CC BY-NC: This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage). Commentary 301 However, these developments and increased knowledge need to be increased seizure frequency, but there were higher increases in explicitly and clearly communicated to our patients. drug doses among the pregnant WWE group.9 Previous liter- In this study, individual, semi-structured interviews by ature suggested that seizures may increase or worsen in severity phone were conducted with 20 WWE aged 18-43 (median age in association with certain trimesters of pregnancy or during the 23 years) who were diagnosed with epilepsy prior to 18 years peripartum period. However, this publication showed there of age. There were 5 themes that emerged regarding concerns were no differences between pregnant women and controls about SRH: 1) Concerns about endangering pregnancies and according to the pregnancy stage or seizure type including children while having seizures, including a miscarriage or generalized tonic clonic seizures.9 hurting a young child, particularly in the newborn period, or Heritability: Many WWE also worry about the chance that concerns about being unable to parent due to seizures. 2) their child will develop epilepsy. For all comers, if the parent Concerns about teratogenic effects of ASMs. 3) Concerns has epilepsy, the risk of epilepsy in the child is 4.7%. However, if about having children due to fears about the heritability of one knows the phenotype of the parent, one can be more epilepsy. 4) Concerns about whether ASMs or epilepsy could specific. For example, if the parent has a generalized epilepsy cause infertility. 5) Concerns about interactions between disorder, the risk of any kind of epilepsy in the child is 7.3%. If ASMs and contraception. The study focused on patients’ the parent has a focal epilepsy disorder, the risk of any kind of perspectives about contraception, fertility, and heritability of ep- epilepsy in the child is 2.9%. This is compared to a baseline risk ilepsy, being sure to include perspectives from WWE who de- of epilepsy in the general population of 1.3%.10 veloped epilepsy prior to age 18 and could comment on the SRH Contraception: Intrauterine devices (IUDs) are recom- concerns of adolescent and young adult nulliparous WWE who mended as an effective birth control method that is not affected were not actively planning pregnancy. Previous literature focuses by enzyme-inducing ASMs. While hormonal IUDs suppress largely on pregnancy and preconception concerns of WWE who menses, it is important to note that this type of contraception were actively planning pregnancy or pregnant. However, this article does not suppress ovulation and thus does not treat seizures highlights the need for conversations and education about SRH related to catamenial epilepsy. Depo-Provera injections are starting in adolescence, to ensure this population has adequate and thought to prevent pregnancy by stopping ovulation and thus accurate information to make informed decisions about their SRH may be helpful in treating catamenial epilepsy. Other forms of and family planning. It also affirms the need for SRH discussions to hormonal contraception, including oral contraception pills, the be incorporated into the transition process from pediatric to adult patch, and the vaginal ring, can all be affected by enzyme- care for this population, as is recommended by the Child Neurology inducing ASMs which in turn reduce the efficacy of these birth Foundation.6 control methods, placing the patient at risk for an unplanned This publication does an excellent job in identifying con- pregnancy. cerns of WWE as early as puberty and emphasizing the need for In summary, the information from this publication could and providers to address these multiple concerns surrounding SRH should be used to help develop patient education materials to and future family planning. In the remainder of this com- improve SRH awareness among all women of childbearing age mentary, I will attempt to provide explicit responses that may be to help reduce anxiety and guide future family planning. This used for further educational discussions surrounding the informational material could be used to supplement the routine identified areas of concern. provider-patient discussions and also help to improve collab- Fertility and Pregnancy Outcomes: It has been demonstrated oration between neurologists, primary care providers, and re- that WWE, when compared to women without epilepsy, have productive health providers to best serve the SRH needs of comparable likelihood of achieving pregnancy, time to achieve WWE. pregnancy, and pregnancy outcomes (live births vs miscar- riages).7 However, women taking enzyme-inducing ASMs were ORCID iD reportedly less likely to achieve pregnancy compared with Danielle A. Becker https://orcid.org/0000-0002-4792-8055 women receiving other ASMs.7 A possible reason for this finding may be related to the induction of folic acid by enzyme- inducing ASMs, which supports the common practice of References placing WWE on higher doses of folic acid if they are taking an 1. Harden CL, Meador KJ, Pennell PB, et al. Management issues for enzyme-inducing ASM to prevent the development of major women with epilepsy—focus on pregnancy (an evidence-based congenital malformations. Some WWE can have higher rates of review): II. Teratogenesis and perinatal outcomes: Report of the developing polycystic ovary syndrome (PCOS), which is as- Quality Standards Subcommittee and Therapeutics and Tech- sociated with infertility, compared with women without epi- nology Subcommittee of the American Academy of Neurology lepsy. The higher rates of fertility issues related to PCOS are and the American Epilepsy Society. Epilepsia. 2009;50: more often seen in patients who have used valproate in idio- 1237-1246. pathic generalized epilepsy syndromes.8 2. Kirkpatrick L, Harrison E, Borrero S, et al. Sexual and repro- Seizure Frequency in Pregnancy: It was recently demon- ductive health concerns of women with epilepsy beginning in strated by Page Pennell et al., that there was no meaningful adolescence and young adulthood. Epilepsy & Behavior. 2021; difference among pregnant WWE and nonpregnant WWE in 125:108439. 302 Epilepsy Currents 22(5) 3. Finer LB, Zolna MR. Declines in unintended pregnancy in the 7. Pennell PB, French JA, Harden CL, et al. Fertility and birth United States, 2008–2011. N Engl J Med. 2016;374(9): outcomes in women with epilepsy seeking Pregnancy. JAMA 843-852. Neurol. 2018;75(8):962-969. 4. Manski R, Dennis A. A mixed-methods exploration of the con- 8. Morrell MJ, Hayes FJ, Sluss PM, et al. Hyperandrogenism, traceptive experiences of female teens with epilepsy. Seizure. ovulatory dysfunction, and polycystic ovary syndrome with val- 2014;23(8):629-635. proate versus lamotrigine. Ann Neurol. 2008;64(2):200-211. 5. Agarwal R, Patel R, Set K, Zidan M, Sivaswamy L. Safety, 9. Pennell PB, French JA, May RC, et al. MONEAD Study awareness, and familiarity regarding epilepsy in teenage years Group Changes in seizure frequency and antiepileptic (SAFETY): understanding the adolescents’ perspectives about Therapy during Pregnancy. N Engl J Med. 2020;383(26): their disease. Epilepsy Behav. 2014;41:114-118. 2547-2556. 6. Child Neurology Foundation. Transitions of care. Minneapolis, MN: 10. Peljto AL, Barker-Cummings C, Vasoli VM, et al. Familial risk of Child Neurology Foundation. https://www.childneurologyfoundation. epilepsy: A population-based study. Brain. 2014;137(Pt 3): org/transitions. (Accessed 23 July 2021). 795-805.