Article In Brief
A new study suggests that non-medical issues in pregnant women with epilepsy, such as stressors in their personal lives, need just as much attention as seizure management.
Women with epilepsy are more likely to experience life stressors during pregnancy, facing challenges such as job loss, homelessness, and even domestic abuse, according to an analysis of self-reported data from a federal survey published April 18 in Neurology.
While clinicians have made strides in helping women with epilepsy achieve healthy pregnancies and births through improved seizure management, the new study suggests that non-medical issues need attention as well.
“We are overall doing a good job medically managing women with epilepsy during pregnancy, and they are doing well,” said the study's lead author, Naveed Chaudhry, MD, assistant professor of neurology at University of Colorado School of Medicine. “But this research suggests that women with epilepsy are having more stress in pregnancy, some of which may be recognized and at least some of it going unnoticed.”
He said providers who care for pregnant women with epilepsy need to ask about what's going on in their lives and connect them with social workers, counselors, and other support services as needed.
“Even women who have a successful pregnancy could be having stress and could benefit from counseling throughout pregnancy,” Dr. Chaudhry said.
CDC Survey Data Analyzed
The study authors pointed out that, up to now, there have been no studies using population-level data to evaluate life stressors in women with epilepsy during pregnancy. Examining stress-inducing factors is important because “stress during pregnancy is potentially harmful for both the mother and the fetus,” increasing the risk of miscarriage, preterm labor, low birthweight, and preeclampsia, the study authors said. Stress, and in particularly stressful live events, also may increase seizure frequency.
The new study used data from the Pregnancy Risk Assessment Monitoring System (PRAMS), an ongoing surveillance system by the US Centers for Disease Control and Prevention that collects pregnancy-related information in 50 states/locales. The surveillance represents about 81 percent of live births in the US, with each state sample including between 1,300 and 3,400 women postpartum. The women are contacted by mail and telephone, if needed, and the response rate is 50 to 85 percent. PRAMS oversamples certain populations, such as mothers with low birthweight babies and mothers of a minority race.
“We are overall doing a good job medically managing women with epilepsy during pregnancy, and they are doing well. But this research suggests that women with epilepsy are having more stress in pregnancy, some of which may be recognized and at least some of it going unnoticed.”—DR. NAVEED CHAUDHRY
The PRAMS survey includes core questions that all states ask, although 13 states and locales also ask postpartum women if they had a diagnosis of epilepsy three months prior to their pregnancies. The survey also asked about asthma, anemia, heart problems, thyroid problems, polycystic ovary syndrome, or anxiety.
The PRAMS survey collected information on 14 life stressors experienced prior to giving birth: illness of a family member, divorce or separation, moving, homelessness, loss of job by the mother, loss of job by the mother's partner or husband, reduced hours or pay, being apart from the partner, excessive arguing, difficulty paying bills, mother or partner in jail, drug use by a close contact, death of someone close to the mother, and pregnancy undesired by the mother's partner. PRAMS also asked the women if their partner or another close contact had abused them physically, emotionally, or sexually.
The study included data from 64,951 postpartum women, including 1,140 respondents (1.99 percent of total) who reported having a diagnosis of epilepsy in the three months prior to pregnancy.
The Stressors in Women With Epilepsy
After adjusting for covariates, women with epilepsy were 1.24 times more likely to report having experienced stressors than women without epilepsy. In addition, women with epilepsy were more likely than those without to have experienced nine of the 14 stressors: illness of a family member, divorce or separation, homelessness, loss of job by the mother, loss of job by the mother's partner or husband, a cut in work hours or pay, arguing more than usual with their partner, serving jail time, drug use in a close contact, and death of a close contact.
Other factors associated with more stressors were being of younger age, of Indigenous or mixed race, or of a non-Hispanic ethnicity; having a lower income; and using the supplemental nutrition program for women, infants, and children (WIC) or Medicaid, the study found. Women who were married were less likely to report stressors.
Women with epilepsy were also more likely to report abuse before or during their pregnancies than those who were not pregnant—10.7 percent versus 4.1 percent.
After adjusting for factors such as age, race, and socioeconomic status, the analysis found that women with epilepsy were still more than twice as likely to report that they had experienced abuse compared to women without epilepsy, a finding that aligns with some previous studies that found that abuse, or a history of it, is more common in people with epilepsy.
The study noted in general that “domestic and sexual abuse is a significant public health issue and adds substantially to the cost of health care during pregnancy due to its association with poor maternal and fetal outcomes,” though the study did not include information on birth outcomes for the women who responded to the survey.
The analysis also examined the impact of epilepsy in pregnant women compared with other chronic health conditions and likewise found an association between chronic health issues and life stressors, particularly with heart disease, thyroid disease, and asthma. Women with epilepsy were much more likely to experience another health condition (77 percent) compared to the non-epilepsy group (14 percent). But even after statistical adjustments, in women without any of these chronic conditions, women with epilepsy were 1.47 times as likely to report stressors compared to women with epilepsy who were not pregnant.
“The presence of these substantial life stressors is an important consideration for clinicians managing WWE [women with epilepsy] and emphasizes the importance of counseling and the need for support services such as social workers, psychologists, or psychiatrists,” the study said.
Dr. Chaudhry said he hoped the findings would encourage neurologists and others who care for pregnant women with epilepsy to ask about stress—a line of discussion that may seem a bit awkward and personal amid the usual focus on medication choice and dosage and the patients' concerns about when their next seizure may occur.
He also would like to see the development of a questionnaire that providers could use to guide the conversation and determine if a social worker or counselor would be needed.
The study had limitations, including the fact that it was based on self-reports by the mothers, which could have resulted in recall bias. The study also did not focus on birth outcomes, though the authors said future research could help illuminate whether stressors led to worse birth outcomes.
Another limitation was that the PRAMS survey did not ask specifics about the women's epilepsy, including what type of epilepsy they had, medication use, and whether their seizures were well controlled. It is possible that some respondents had psychogenic non-epileptic seizures, which has been associated with a history of abuse, the study noted. The researchers also noted that the PRAMS survey does not collect data on gender identity or the gender of the postpartum individual's partners.
“This is a limitation, as members of the LGBTQ community also experience substantial additional stressors related to discrimination both inside and outside the health care system,” the authors said.
The study did not examine the reasons behind the life stressors, though the authors suggested “these increased stressors could be due to lack of support systems, poor coping skills, and lack of resources to manage their pregnancies.” The survey questions only focused on negative life stressors, even though positive stressors (such as graduation or starting a new job) “can be equally or more stressful,” as can daily stressors, too.
Experts Comment
Andres M. Kanner, MD, FAAN, clinical professor of neurology and director of the Comprehensive Epilepsy Center at University of Miami Miller School of Medicine, said the study results did not surprise him, though some of the findings, particularly regarding the increased risk for domestic abuse, warrant more investigation.
“The data are not surprising because, in general, women with epilepsy have an increased number of stressors. Unfortunately, epilepsy brings with it a variety of potential stressors on your daily life—you can't drive, you're dependent on others, you can't hold certain jobs, you're subject to stigma,” he said.
But Dr. Kanner said the survey-based study on life stressors in pregnancy is missing important clinical data that could help back up the self-reported responses. He noted that it would be critical to know whether the women with epilepsy who said they had experienced abuse had a documented diagnosis of epilepsy or instead a history of psychogenic non-epilepsy seizures, which is more common in women and often includes a history of abuse. He cautioned against making alarming statements about the prevalence of domestic abuse in pregnant women with epilepsy until confirmatory data are available.
Dr. Kanner said many misconceptions around epilepsy and pregnancy have been refuted by recent research, including the much-cited MONEAD study that reported positive developmental findings for babies born to women with epilepsy. “Women with epilepsy have an excellent chance of giving birth to a healthy baby and to have non-eventful pregnancies, particularly when their pregnancy is well managed,” he said.
“If you are treating a woman with epilepsy and don't know the patient's psychosocial profile, you're not doing a good job,” Dr. Kanner said.
Elizabeth E. Gerard, MD, associate professor of neurology at Northwestern University Feinberg School of Medicine and director of the Women with Epilepsy Program at Northwestern Medicine, said the new study “points out a troubling disparity in the number of stressors mothers with epilepsy may be exposed to compared with their peers,” and the “difference in reports of abuse is particularly concerning.”
“The stress these mothers endure has repercussions not only for the mothers themselves but for their children as well,” said Dr. Gerard, who was a site principal investigator for the MONEAD study. She said the study found that maternal anxiety, mood, and perceived stress had implications for child neurodevelopment.
“Clinics and providers who take care of these patients should provide screening for important life stressors as well as depression and anxiety,” Dr. Gerard said.
“When taking care of these patients, it's not just about medications. We should be asking about what else is going on in their lives, in the home, because that affects outcomes, too.”
She said clinics “should ideally be provided with the resources needed to evaluate and mitigate particular stressors. This may include specific training (including on domestic violence), social work, and mental health support and more time with patients.”
Dr. Gerard noted that while “this study focused on mothers with epilepsy, the increase in incidence of stressors extends to non-pregnant individuals with epilepsy as well.”
