Age-Related Counseling Requirements for Women with Epilepsy

Abstract

Purpose:

Women with epilepsy (WWE) have varying concerns at different ages and require relevant counseling and management. We conducted a retrospective chart review of WWE seen at the specialized women’s epilepsy clinic at Westchester Medical Center (WMC) from May 2024 to June 2025.

Findings:

We included patients 18 or older assigned female at birth referred for epilepsy evaluation and management. There were 117 patients who were subdivided into the age groups of 18–30, 31–44, and above 45 years old. 65.9% of patients received care related to the management of seizures or epilepsy, whereas 23% were found to have seizure mimics such as syncope, tremors, migraines, or transient ischemic attacks, and 11% were identified as functional seizures or functional neurological disorder. Our results show that 22% of patients with epilepsy on antiseizure medications (ASMs) had never received contraception counseling, 48% were unaware of fetal malformation risks from ASMs and the benefit of folic acid supplementation, and 71% had not been counseled on bone health.

Conclusions:

Women seen in a specialized women’s epilepsy clinic at WMC demonstrated distinct age-related concerns. Younger patients focused on reproductive health, whereas older patients prioritized comorbidities and seizure mimics. Unlike prior data, patients aged 31–44 and 45 and above had greater counseling needs than the 18–30 age group transitioning from pediatric care. These findings support the need for age-specific epilepsy counseling and targeted counseling to improve patient compliance. This study underscores the need for a specialized epilepsy clinic in addressing both medical and psychosocial aspects of care for WWE.

Keywords

women with epilepsy counseling reproductive health bone health contraception folic acid

Introduction

Epilepsy affects approximately 1.2% of the U.S. population, with women comprising nearly half of this group.¹ For women of reproductive age, epilepsy management presents unique challenges, particularly concerning the use of contraception and the potential teratogenic effects of antiseizure medications (ASMs) during pregnancy. The risk of major congenital malformations at all doses has been found to be significantly higher for valproate, carbamazepine and phenobarbital compared with lamotrigine, levetiracetam, and oxcarbazepine.² ASMs such as valproate are associated with cognitive impairments and poor neurodevelopmental outcomes.³ Despite these well-documented risks, studies have consistently shown that a significant proportion of women with epilepsy (WWE) do not receive adequate preconception counseling or guidance on appropriate contraceptive methods.^4,5 Compounding this issue, several ASMs can reduce the serum concentration of estrogen and progesterone, leading to decreased efficacy of hormonal contraceptives, further increasing the risk of unplanned pregnancy.^3,6 Conversely, some hormonal contraceptives can influence the metabolism of ASMs, potentially altering seizure control.⁷ Pharmacologic considerations further complicate counseling. The selection of a safe and effective contraceptive method in women taking ASMs requires individualized assessment, considering seizure type, ASM profile, comorbidities, and patient preference. In addition, ASMs are associated with a two- to three-times increase in risk of fractures due to the development of osteoporosis.^8,9 Given the critical role of neurologists, obstetricians, and primary care providers in mitigating these risks, targeted counseling that integrates reproductive health considerations into epilepsy care is essential.

This article aims to examine current practices of counseling WWE about contraception, pregnancy-related risks, and bone health and highlight gaps in care. The long-term goal would be to identify strategies for improving interdisciplinary management and bring awareness to this much needed improvement in health care. While guidelines from professional societies emphasize the importance of reproductive counseling in WWE, real-world adherence remains suboptimal.¹⁰ In many clinical settings, counseling is reactive rather than proactive. It is often initiated after a patient becomes pregnant or experiences complications due to ASMs. This reactive approach fails to address the full spectrum of reproductive health needs, from contraceptive planning to informed decision-making about pregnancy and medication adjustments. Furthermore, limited consultation time, fragmented care across specialties, and lack of standardized counseling protocols contribute to inconsistent patient education and missed opportunities for prevention.

Despite the complexity of care, interdisciplinary collaboration remains limited. Neurologists, gynecologists, primary care providers, and pharmacists each hold pieces of the puzzle, yet coordination among these stakeholders is frequently lacking. Moreover, disparities in both epilepsy diagnosis and management have been noted among socioeconomically disadvantaged and minority populations,¹¹ suggesting that structural barriers and implicit biases may further exacerbate gaps in care in people with epilepsy.

Methods

We conducted a retrospective chart review of women aged 18 and older who were referred to the specialized women’s epilepsy clinic at Westchester Medical Center in suburban NY. Our study focused on a diverse population, both English- and Spanish-speaking patients from urban and rural areas. Neurology clinic charts, both initial and follow-up visit notes from May 2024 to June 2025, were reviewed for counseling documentation. Follow-up times were typically 6 months; however, appointment follow-ups were based on personal patient factors such as severity and acuity of their condition. If the patient had pediatric neurology records, those were also reviewed for any prior counseling from a neurologist. Our study focused on expert neurologists and their role in counseling, and no other records such as OBGYN were reviewed. To be included in the study, patients had to be currently on an ASM with a diagnosis of epilepsy. Patients with seizure mimics such as syncope, tremors, migraines, or transient ischemic attacks and functional seizures (FS) or functional neurological disorder were not included in the study. No patients with FS had true epileptic seizures, and none were included in the counseling data. A total of 117 patients assigned female at birth were categorized into three age groups: 18–30, 31–44, and 45 and above. Early menopause is defined as menopause starting before the age of 45, so the age cutoff of 44 was decided on for the middle age group that we analyzed.¹² While we appreciate that some women may get pregnant beyond the age of 44, we decided that based on the definition of early menopause, this was an appropriate cutoff for our counseling data. The patient data were evaluated for variables stored in the data collection tool. Data on demographics, epilepsy history, chief complaint, counseling, and management were collected. Patients aged 18–44 were chart checked for counseling on contraceptive concerns, folic acid supplementation, and bone health pertaining to the use of ASM. Patients aged 45 and above were chart checked for counseling on bone health with the use of ASM. The primary goal was to look for the prevalence of counseling in the medical records, and a secondary goal was to identify gaps in care.

Statistical analysis was performed after data were compiled. From the chart review, patient descriptors such as age, diagnosis, and “yes/no” for whether they were counseled on contraception, folic acid, and bone health were recorded on an Excel database for WWE. The percentages were then calculated based off of “yes” or “no” for counseling requirements. For the most common complaints, we kept a qualitative section on the Excel database. Patient identifiers were removed and kept confidential. The study ensured patient confidentiality and data security by following all institutional and regulatory guidelines. The study was approved under exempt protocol by our Institutional Review Board (New York Medical College, IRB #25753).

Results

There were a total of 117 patients assigned female at birth, out of which patients with epilepsy on ASM were separated from patients who presented with seizure mimics such as syncope, tremors, migraines, transient ischemic attacks, and those with FS. Of the total patients, 65.9% (77 out of 117) had epilepsy and were on ASM, 23% (27 out of 117) were seizure mimics, and 11% (13 out of 117) were FS, not included in the counseling data (Fig. 1). The patients were initially subdivided into the age groups of 18–30, 31–44, and 45 and above years old. The population concerns based on chart review were recorded. Patients aged 18–30 primarily presented for preconception counseling, peripartum seizure management, epilepsy syndromes, and transition of care from a pediatric neurologist. Patients aged 31–44 mainly presented for peripartum seizure management and general management of epilepsy. Of note, many of these patients mentioned familial stressors during these visits. Patients aged 45 and above presented most commonly with postmenopausal seizure management, memory loss, neurocognitive concerns, cancer diagnoses, syncope, tremors, and multi-medication management (Table 1).

FIG. 1.

Seizures on ASM versus FS/No epilepsy. ASM, antiseizure medications; FS, functional seizures.

Table 1.

Age-Related Concerns in Women with Epilepsy

Age group	Primary concerns
18–30	Preconception counseling, peripartum management, epilepsy syndromes, transition of care
31–44	Peripartum seizure management, epilepsy management, familial stressors
45 and above	Postmenopausal seizure management, memory loss, comorbidities, polytherapy, seizure mimics

Summary of the predominant clinical concerns identified in each age group.

There were 77 patients with a diagnosis of seizures/epilepsy on ASM. The age distribution of these 77 patients showed that 59.7% (46 out of 77) were in the 18–44 age group and 40.3% (31 out of 77) were in the 45 and older group (Fig. 2). The primary outcomes for WWE on ASM included the prevalence of documented counseling on contraception, the prevalence of documented counseling on folic acid supplementation, and the prevalence of documented counseling on calcium and vitamin D supplementation for bone health. Based on the relevance of counseling for each age group, we looked for the presence of contraception and folic acid or reproductive counseling in the 18–44 age group and the presence of bone health counseling in the patients over age 45 with epilepsy on ASM. There were 21.7% (10 out of 46) women who had never received counseling on contraception in relation to their epilepsy and ASM use (Fig. 3). There were 47.8% (22 out of 46) women who had not received counseling on the benefits of folic acid supplementation with a diagnosis of epilepsy on ASM (Fig. 3). The results also showed that patients in the 31–44 age group had greater unmet counseling needs compared with the 18–30 group for folic acid supplementation. There were 52% (11 out of 21) women in the age group 31–44 who had not been counseled on folic acid compared with 44% (11 out of 25) women in the age group 18–30. In the age group 45 and above, there were 70.9% (22 out of 31) WWE on ASM who had not received counseling on importance of bone health (Fig. 4). These significant gaps were observed in our specialized epilepsy clinic for women.

FIG. 2.

Age distribution.

FIG. 3.

Lack of documented counseling (18–44 age group).

FIG. 4.

Lack of documented counseling 45+.

Discussion

This study highlights significant and pervasive gaps in reproductive and bone health counseling for WWE. The data revealed that counseling deficiencies are not confined to a single age group. The results showed that patients in the 31–44 and over-45 age groups had greater unmet needs compared with the 18–30 group transitioning from pediatric care. Prior work has identified that pediatric and transition-age WWE have counseling gaps.^13,14 It affirms that while the common idea is that the highest need for counseling is in the transition from pediatric to adult epilepsy care, all age groups require dedicated and sustained counseling. A notable 71% of WWE on ASM over age 45 were never counseled on bone health, which is concerning considering the compounding effects of ASM with declining estrogen levels during perimenopause and menopause. This deficiency is alarming considering the evidence detailing the ASM-associated bone disease in this population.^8,15 This persistent lack of documentation suggests that once initial reproductive counseling occurs, follow-up and reinforcement throughout different women’s health-related counseling needs throughout life are often neglected. The implication is that counseling must be an integrated and routine component of epilepsy care throughout a woman’s life.

The incidence of bone loss and osteoporosis has been well-documented in individuals with epilepsy on chronic ASM therapy; studies indicate that osteoporosis affects between 11% and 31% of epileptic patients. Patients on ASM are estimated to have a two- to sixfold increased risk of fractures compared with the general population.^8,15–17 This heightened fracture risk is not just from seizure-related falls but also from the ASM-related bone fragility. The pathophysiology is explained by enzyme-inducing ASMs (like phenytoin, carbamazepine, and phenobarbital) accelerating the metabolism of vitamin D into inactive metabolites via the P450 enzyme system. This acceleration leads to impaired calcium absorption and subsequent bone demineralization.^17,18 Even nonenzyme-inducing ASMs, like valproate, have been implicated in promoting bone loss.^17,19,20 Given this well-documented risk, on top of the natural bone fragility that comes with the decline in hormones during aging, the 45 and above population requires aggressive counseling regarding the long-term systemic effects of ASMs. Essential preventative advice includes the necessity of a calcium dose of typically 1,000–1,200 mg daily and vitamin D dose of typically 400–1,000 IU daily supplementation. These dosage recommendations can vary if patients have other medical conditions. Consistent advice on the need for follow-up with a primary care provider for baseline and surveillance bone density scans Dual-Energy X-ray Absorptiometry (DEXA) is also a recommendation.^21,22

For the 18–44 age group, our analysis revealed that while some women received counseling from primary care providers, family practitioners, or gynecologists, a critical lack of routine folic acid advice exists, necessitating neurologist-led guidance. Nearly half of the women aged 18–44 (48%) reported never being counseled on folic acid. This represents a major clinical and public health failure given the established teratogenic risks of certain ASMs relating to neural tube defects and other devastating fetal anomalies such as anencephaly and spina bifida.²³ Studies performed before widespread fortification of folic acid supplementation in the United States have shown a decrease in neural tube defects in offspring of the general child-bearing population who received peri-conceptual multivitamin or folate supplementation.^24,25 The protective effect of folic acid supplementation was felt to be greater in the pregnant patients who were taking ASMs and were already deficient in folic acid. In addition to the potential benefit of folic acid supplementation for prevention of congenital malformations above fortification levels, there is newer data on improved neurodevelopmental outcomes, higher global IQ, and decrease in autistic traits.^3,26 The Norwegian cohort study found that children exposed to ASMs without periconceptional folic acid had significant language delays compared with those whose mothers received folic acid from at least 4 weeks before conception through the first trimester.²⁷ The consensus guidelines recommend at least 0.4 mg/day of folic acid preconceptionally and during pregnancy.²¹ There is a documented decrease in adherence with folic acid in women on ASM polytherapy who may be at greater risk of teratogenic effects. Hence, counseling and improving compliance for folic acid supplementation may be needed in this population at every visit. A prescription for folic acid along with ASMs has been shown to improve compliance.²¹

We found better contraceptive awareness in our population compared with folic acid use for the 18–44 age group. We anticipate that patients who were not explicitly counseled on the impact of ASMs on contraceptive efficacy lacked awareness of this risk. While this study focuses on the adult population, it is important to note that we strongly recommend that counseling begins prior to the transition to the adult clinic given the chance of unplanned teen pregnancies. Contraceptive counseling by epileptologists plays an important role in patients’ contraceptive choices.²⁸ Previous studies have identified this gap in pediatric care, with a significant difference in discussions on the teratogenicity of ASMs as well as folic acid use prior to conception. This is seen in all pediatric transitioning patients and especially in the population with intellectual disability.²⁹ In addition, a survey done found that both health care providers and WWE were unaware of recent relative research findings, further pointing to a lack of complete counseling provided to this population.³⁰ The pervasive and distinct counseling gaps identified across all age groups affirm that current practices of reproductive and bone health care for WWE are suboptimal. The high rates of no documented counseling demonstrate that essential preventative care is not being consistently provided, often falling through the cracks between specialties. The findings strongly support the necessity to integrate standardized, proactive counseling protocols into routine neurology care and to promote robust interdisciplinary collaboration among neurologists, gynecologists, and primary care providers to ensure comprehensive support for WWE.

The limitations of the current study include inadequate documentation at times despite counseling being provided, and every attempt was made to look for additional follow-up visit notes that documented counseling. The physician also could have documented that counseling took place when there was no discussion. The set template of visit notes and single primary epileptologist for WWE in our specialized clinic ensured that there was consistency in documentation of counseling. Another limitation could be that outcomes of counseling were not able to be fully quantified, and our future research endeavors hope to clarify what percentage of population improved compliance after counseling was provided to them. In addition, there is no measure of how well received the counseling was or how in-depth and high quality or informative the discussion was. Our study was a single-center, retrospective chart review with no control group; however, it highlights what could be the current state of reproductive counseling for WWE and opens directions for research and clinical interventions in the future.

Conclusion

Despite the well-established and widely published risks of ASMs, our data reveal a critical failure in the translation of this knowledge into clinical care in the form of patient counseling. For women in the 18–44 age group, a severe gap exists in reproductive health management, evidenced by the finding that nearly half were never counseled on the critical importance of folic acid supplementation. This represents a failure to communicate the most crucial preventative measure against the ASM-related risk of major congenital malformations and adverse neurodevelopmental outcomes. Moving beyond the traditional focus solely on young adults, most prominently, we found that in the 45 and above age group, the majority were not advised to take proactive measures against bone density loss, such as calcium and vitamin D supplementation. The lack of patient education and preventative advice underscores a significant gap between clinical guidelines and real-world practice. This highlights the urgent need for standardized, mandatory reproductive counseling for all female ASM users.

Authors’ Contributions

L.Z.: Formal analysis, investigation, writing—original draft, writing—review & editing. K.K.: Formal analysis, investigation, writing—original draft, writing—review & editing. P.P.: Conceptualization, methodology, formal analysis, investigation, writing—original draft, writing—review & editing, supervision. All authors have read and agreed to the published version of the manuscript.

Footnotes

Author Disclosure Statement

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. There was no funding support for this research.

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