Prepregnancy Education: A Gap in Care for All

Abstract

Original Article Citation

Tao AK, Rivero-Guerra J, McFarlane KN, Kerr WT, Pennell PB, Chang JC, Kazmerski TM, Harrison EI, Kirkpatrick L. Anticipatory guidance and care in pediatric and adult neurology for people with epilepsy who became pregnant. Epilepsy Behav. 2025 Apr; 165:110292. doi: 10.1016/j.yebeh.2025.110292. Epub 2025 Feb 20. PMID: 39983588.

Objective: To assess documentation of pregnancy-related counseling and care for people with epilepsy of childbearing potential (PWECP) in pediatric and adult neurology who became pregnant. Methods: We reviewed health records for primigravida PWECP prescribed an antiseizure medication (ASM) who delivered between June 2014 and May 2024 within one academic medical center. We used chi-squared tests to compare counseling, ASM prescriptions, and recommendations for supplemental folic acid between individuals in pediatric and adult neurology care before pregnancy. We performed logistic regression for these outcomes of prepregnancy counseling associated with type of neurology care, race, ethnicity, intellectual disability (ID), teratogenic profile of ASMs prescribed, and ASM polytherapy. Results: One hundred seventy-three PWECP (84% White non-Hispanic, 9% with ID were included. Twenty-one (12%) transferred from pediatric to adult neurology care due to pregnancy (“pediatric group”) and 152 (88%) were previously established with adult neurology (“adult group”). PWECP in the pediatric group compared to the adult group had lower rates of documentation of clinician discussion of ASM teratogenicity (43% vs 66%, P = .041) and folic acid use (24% vs 63%, P = .001) before pregnancy. PWECP established with adult neurology prior to pregnancy were significantly more likely to have been taking folic acid before pregnancy (OR 5.21, 95% CI [1.78-15.3]). Individuals with ID were significantly less likely to have documentation of discussion of ASM teratogenicity (OR 0.18, 95% CI [0.05-0.62]). Conclusion: Our findings suggest a need for improvement in providing prepregnancy guidance and care for PWECP, especially for PWECP in pediatric neurology care and those with ID.

Commentary

People with epilepsy of childbearing potential (PWECP) may be at an increased risk of having a child with major congenital malformations or poor neurodevelopmental outcomes related to their antiseizure medication (ASM).^1,2 Given these risks, there is necessary education and action that should be taken when people with epilepsy (PWE) become of childbearing age. To aid in guidance around these discussions for our patients, the American Academy of Neurology put forth updated practice guidelines published in 2024, recommending that clinicians consider using low risk ASMs, discuss drug–drug interactions (DDI) with contraception, prescribe daily folic acid supplementation, and counsel on the benefits of folic acid supplementation in promoting optimal neurodevelopmental outcomes. ³ In addition, given that over half of pregnancies among PWECP are reported to be unintended and can occur at less than 18 years of age, anticipatory guidance and counseling discussions are crucial in both the pediatric and adult neurology populations prior to pregnancy.

The article reviewed in this commentary focused on both pediatric and adult neurological pregnancy-related care and counseling prior to pregnancy. It is a retrospective analysis of electronic medical records which compared documentation of prepregnancy counseling and care between PWECP who transferred from pediatric to adult neurology care due to becoming pregnant or who had established care with adult neurology prior to pregnancy, between June 1, 2014 and May 31, 2024, at an academic Level 4 epilepsy center. ⁴ The authors hypothesized that PWECP seen by pediatric neurology prior to pregnancy received lower rates of prepregnancy guidance and care than PWECP who established with adult neurology prior to pregnancy. The authors extracted the use of teratogenic ASMs (carbamazepine, phenobarbital, phenytoin, topiramate, valproate), use of lower risk ASMs (lamotrigine, levetiracetam, oxcarbazepine), use of ASMs with unknown risk (all others), documentation of teratogenicity counseling, folic acid prescription or documentation of folic acid recommendation, and documentation of folic acid adherence from clinician notes prior to pregnancy. In total there were 173 PWECP included, of which 21 (12%) transferred from pediatric to adult neurology due to pregnancy (“pediatric group,” median age at delivery 20 years, interquartile range [IQR] 18-21, range 13-25) and 152 (88%) had established care with adult neurology prior to pregnancy (“adult group,” median age at delivery 28 years, IQR 24-31, range 19-41). Most PWECP identified as White (87%) and non-Hispanic/Latino (84%). About 10% had intellectual disability. About 20% of subjects in each cohort had drug-resistant epilepsy. An ASM with known teratogenic effects prior to pregnancy diagnosis was prescribed to 19% of the pediatric group and 14% of the adult group (P = .52). Topiramate was prescribed to 19% of the pediatric group and 7% of the adult group. Other teratogenic ASMs prescribed for PWECP in the adult group included carbamazepine (4%), valproate (3%), phenobarbital (0.7%), and phenytoin (0.7%). Documented discussion of teratogenic risks of ASMs was lower in the pediatric group (43%) than the adult group (66%, P = .041). Clinicians documented recommendations for supplemental folic acid for 62% of the pediatric group and 72% of the adult group (P = .32). There were lower rates of documentation of PWECP taking supplemental folic acid prior to pregnancy in the pediatric group than the adult group (24% vs 63%, P = .001). Of those recommended folic acid supplemental prior to pregnancy (pediatric group n = 13, adult group n = 110), the pediatric group had documentation of lower rates of adherence to the recommendations (38% vs 87%, P < .001).

This publication does an excellent job in identifying and supporting the need for improvement in both pediatric and adult neurology pregnancy-related care and counseling prior to pregnancy. Suboptimal rates of folic acid recommendation, adherence to the folic acid recommendation, and discussion about ASM teratogenicity prior to pregnancy in the pediatric and ID groups were illustrated. This study highlights and confirms the need for these discussions to be incorporated into pediatric care, especially before the transition to adult care.

One limitation of this study was that clinician documentation of folic acid supplementation and ASM teratogenicity discussion was used as an indicator of whether prepregnancy care and guidance was provided, although some clinicians may not have documented their discussions in the medical record. In addition, the clinician documentation was only utilized to assess whether certain measures of guidance and care were discussed, but did not capture the extent or quality of counseling. Another limitation of the article is that it did not include a discussion about contraception counseling and potential DDIs between contraceptive and antiseizure medications, especially in a pediatric population who may be at higher risk for unplanned pregnancies. Lastly, this study occurred at a single academic medical center which may limit generalizability and racial and ethnic diversity.

Previous literature focuses largely on pregnancy and preconception concerns of PWECP who were actively planning pregnancy or pregnant. However, this article emphasizes the need for education in pediatric neurology as well as for populations with ID, to ensure these populations have adequate and accurate information to make informed decisions about their epilepsy treatment prior to pregnancy. The information from this publication could and should be used to help develop interventions to improve awareness among all PWECP to help reduce anxiety and guide future family planning. Various barriers may prevent clinicians from providing prepregnancy-related counseling, including limited time and other competing topics of discussion during clinic visits. In an effort to improve the gap in education and prepregnancy care, our center developed a clinic focused on educating all PWECP on ASM teratogenicity and benefit of folic acid supplementation including targeted interventions to increase awareness and adherence to the recent AAN guidelines. This referral-based service is led by a clinical pharmacist integrated into our neurology clinic. Each office visit with the pharmacist consists of a review of the patient's current medication list, the patient's plans for pregnancy, current method to prevent pregnancy (if applicable), review of drug–drug interactions between contraception and ASM, counseling on the teratogenic risks of ASMs, evaluation of prescribing lower-risk ASMs when appropriate and the recommendation for folic acid supplementation. Patients are seen in the preconception planning clinic on a yearly basis for continued review of this information. This clinic is now part of our standard practice, with health system changes to our workflow incorporating specified patient guidance that utilizes multidisciplinary expertise to enhance education. This article provides objective data for support and motivation to develop new formalized interventions to increase knowledge that is explicitly communicated to all PWECP prior to pregnancy.