UPMC Children's Hospital of Pittsburgh, 4401 Penn Avenue, Pittsburgh, PA 15224, United States.
Center for Women's Health Research and Innovation, University of Pittsburgh, 230 McKee Place, Pittsburgh, PA 15213, United States; Department of Medicine, University of Pittsburgh, 1218 Scaife Hall, 3550 Terrace Street, Pittsburgh, PA 15261, United States.
Epilepsy Behav. 2021 Dec;125:108439. doi: 10.1016/j.yebeh.2021.108439. Epub 2021 Nov 25.
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.
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.
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.
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.
患有癫痫的女性（WWE）在其性与生殖健康（SRH）方面可能存在独特的问题。既往针对 WWE 的研究主要集中在妊娠和备孕方面，并未涉及不积极备孕的青春期和年轻成年未产妇的相关问题。
我们对 18-45 岁的 WWE 患者进行了个体半结构式访谈。我们采用了最大程度提高年龄和产次多样性的抽样方法，并有意纳入了许多不积极备孕的青春期和年轻成年未产妇。访谈内容广泛涵盖了参与者的 SRH 问题和经历。访谈内容进行了录音并转录。两名编码员采用了基于演绎和归纳的主题分析法进行定性分析。
共有 20 名 WWE（中位数年龄 23 岁，范围 18-43 岁）完成了访谈。其中 12 名未产妇，6 名有子女，1 名仅有流产史，2 名正在妊娠。WWE 的叙述揭示了她们在癫痫背景下对计划生育和生殖健康的重大担忧，包括：1）癫痫发作危及妊娠和胎儿；2）抗癫痫药物的致畸作用；3）癫痫的遗传性；4）抗癫痫药物和癫痫对生育能力的影响；5）抗癫痫药物与避孕之间的相互作用。
包括不积极备孕的青春期和年轻成年未产妇在内的 WWE 患者对癫痫与 SRH 的相互作用存在重大担忧。应在青春期开始对 WWE 患者进行 SRH 咨询，并将其纳入从儿科到成人保健的过渡过程中。WWE 的观点可能有助于创建相关的面向患者的教育资源，以及面向提供者的培训和工具，以在 WWE 的生育期内为其生殖决策提供有意义的支持。
