Living with Epilepsy-Insights and Suggestions for Adopting Models of Care for Pregnant Women with Epilepsy

Insights and Suggestions for Adopting Models of Care for Pregnant Women with Epilepsy

Video Transcription

I'm Sirita Maturu. I'm from Ohio State Wexner Medical Center. I'm an epileptologist, and today, along with Dr. Nemi Vélez-Ruiz from University of  Miami, we're very excited to talk to you about adopting models of care for pregnant women with epilepsy. My only disclosure is that I'm a board member of  My Epilepsy Story since 2020, and Dr. Vélez-Ruiz does not have anything to disclose. So today, our talk will be split into two, so I'll be talking to you  about a model of care for an epilepsy pregnancy clinic that was started at two different institutions but has been almost identical and successful, I would  say, and then I'd like to end my part of the talk with telling you about how you can make your own epilepsy pregnancy clinic if that's something you're  passionate about, and this can be in a resource-rich or a resource-limited institution. And then Dr. Vélez-Ruiz will be talking to us about all the data and  their research that supports our clinical models. So typically, we break up our clinic model into four separate patient visits for every epilepsy  pregnancy patient. So there is a first trimester visit, second trimester visit, a third trimester visit, and then a postpartum visit or the fourth trimester  visit. During the first trimester visit, it's really important, of course, to talk about anti-seizure medications and how they can lead to major congenital  malformations. We all know that the general population has about a 2% chance of having a baby with a major congenital malformation, and that can increase with  certain anti-seizure medications. Of course, we have a lot of data on some medications, and we can give certain percentages out to our patients, but then  there's not a lot of data on some of the newer generation medications, and I think it's just important to be transparent about what we know and what we don't  know. It's also a good time to discuss neurodevelopmental outcomes, particularly for one medication. We know that there are poor neurodevelopmental outcomes, and  it's really important to be transparent about that so, you know, the family knows what to expect potentially in the future as well. This is the visit where we  talk about monitoring lab work. We get lab work every month. For me personally, I try to tell my patients to get it around the same time of the day so that I can  kind of account for peak versus trough levels, but really just setting, making sure that they understand that this is really important to their care and that,  you know, we really want to avoid breakthrough seizures, and so this is something that we absolutely need to integrate into their monthly practice.  This is also a great time to ensure that they're taking folic acid. Of course, we prescribe folic acid the first time, you know, we're prescribing an anti-seizure  medication to anyone of childbearing age, but sometimes that can get lost in translation, so just to make sure we're all on the same page, it's important to  reiterate the benefits of folic acid and how that can improve neurodevelopmental outcomes, and then I think it's really important to document OBGYN information.  A lot can get lost in translation if you don't have open communication with the OBGYN, so documenting who their OBGYN is and sending them notes along the way, I  think just opens the line of communication for both providers, but also for the patients, so they don't feel like they're stuck in the middle having  to communicate information that both providers are telling them, and then, of course, just establishing the estimated due date. In between visits, each patient  is placed on an epilepsy pregnancy list, and really that's so that we can keep track of if they're getting their monthly lab works, and if they're not getting their  monthly lab work, to send them a reminder, call them, and say, hey, your lab work is due, and that helps us because we're keeping a close eye on this lab  work, and we're going to adjust medications based on these serum levels. We're also adjusting medications in between if someone has a breakthrough  seizure, of course, or, you know, anything that happens in between, potentially, and then this leads us to our second trimester visit. Oftentimes, multiple  medication changes have been made in between, you know, the first trimester visit and the second trimester visit, so really just going over meds again, making  sure that you're on the same page in terms of what everyone's taking, what are the doses, ensuring that your patients are getting monthly lab work. That can be  hard, of course. It's hard to get anything monthly, and so I think just reiterating that it's very important and really brainstorming ideas, so do we need to  write it in your calendar? Do we need to set, you know, phone reminders? Do we just need to sync it with your OBGYN visits? You know, anything that we can do to help  with monthly lab work. Again, confirming the use of folic acid is very important, and then I try really hard to try to do my second trimester visits after the  anatomy scan. The anatomy scan can be really important for us because it's a means to screen for major congenital malformations, and so it's a great time  to review that data with them in case anything did come up that was positive, but also it can give us kind of insight into other things that are associated  with patients that do have epilepsy, so having babies that are small for gestational age or maybe red flags that pop up for preterm labor, things like  that. The next visit is the third trimester visit. This is a really important visit to go over a postpartum plan, so as we just talked about,  medications change really frequently during pregnancy, and so it's important that we have a communication for the postpartum plan. We don't want to leave  them at those really high doses because after pregnancy and after you deliver, you start to metabolize medications the same way you would just prior to getting  pregnant, and so if you're on these really high doses of medication, you're gonna start feeling really toxic on those medications very fast, so imagine  having a newborn and feeling incredibly dizzy on lamictal, so we need to make sure that we have a postpartum plan written up for them and that there's two  ways that we're communicating this, so one way is to give it or send it to their OBGYN directly so that they have the plan in hand, but the other thing I  like to do is print it off for my patient and I say take it, you know, in your go bag or the bag that's going with you to the hospital and hand it to staff  as soon as you get there. You're gonna be very preoccupied, obviously, with delivering a baby and then taking care of a newborn, so, you know, that kind of  takes it off of your plate and then imparts that information to the staff. It's also important time that we're counseling on breastfeeding, you know,  many of our patients still get the message that breastfeeding is unsafe if you're taking an anti-seizure medication, that's gonna happen in the hospital, so  we need to be able to tell them that it is safe to breastfeed and if they would like to breastfeed, then that should be a goal that they can definitely achieve,  but it's also important, you know, to give knowledge but also to understand what a patient's goal is, so if that's not in their goals and they don't want to  breastfeed, that's completely fine just as long as all that information is given to them ahead of time. Counsel on postpartum anxiety and depression, I try  to go over ways to help with sleep deprivation. Ideally, our patients are getting five to six hour blocks of sleep, that's a lot, actually, when you have a  newborn and so really just going troubleshooting ways, getting people that come to any visits involved, anything that they can pull from their  social support system is really helpful during this time, and then I like to go over general safety recommendations. So, of course, if you have some support, maybe  not giving baby a bath by yourself, not wearing forward-facing carriers, things like that, absolutely not sleeping with baby in the bed, you know, things that you  might not think about when you're just trying to get a little bit of sleep or trying to make sure baby isn't crying, and then I use the last part of this  visit to talk about contraception, so it's really important that we're already talking about contraception in the third trimester visit because 50% of epilepsy  patients have unplanned pregnancies and some report even higher than that, so we need to talk about contraception, you know, right in the third trimester so  that even between visits people know what they could potentially be on, what could be effective, and what could be interacting with their anti-seizure  medications. There's also some misconception that if you breastfeed that you cannot have a baby, that's a form of birth control, but that is not an  adequate form of birth control, and so it's just really counseling and making sure we're all on the same page. And then the fourth trimester visit or the  postpartum visit, in the third trimester when I am giving people, you know, an anti-seizure medication plan to back their medications down, sometimes I leave  them on a slightly larger dose just depending on how much we increase to help account for sleep deprivation and stress, and so I use that postpartum  visit to really back them down to their pre-pregnancy dose. I rediscuss contraception, so I just make sure that they started a contraception if they  don't want to get pregnant again immediately, and just make sure that they know what contraception would be safe for them. And then a lot of times in my  clinic I get referrals from outside neurologists or OBGYNs or epileptologists, and so I'm just referring people back with kind of a  summary letter of what we did during their pregnancy. And so that's a clinic model that we've both kind of established in our separate institutions,  but I also really wanted to quickly talk about potentially a clinic model that could be started at any institution if you're really passionate about it. So I  think in general when you're starting some type of multidisciplinary specialty clinic, it's really important to define your goals. So are you trying to start  more of a general women's clinic, or are you trying to be very narrow and specific and just do an epilepsy pregnancy clinic? So what is your  passion, who are you trying to help, and how can you reach your goals and provide that information to a population? So a lot of times working with administration  and figuring out how many referrals you're getting over a six-month to one year period can help you establish how much time you'd want to block off for a  certain clinic. And I do think it's really important to block off a period of time for this patient population that you're interested in teaching, or sorry,  interested in having in patients and clinic. Because what happens is oftentimes if we don't block off a period of time, you're scheduling three, four months out,  right? So if you get a referral for an epilepsy pregnancy, pregnant patient, you don't want to see them after they delivered their baby. That's not going to  be helpful. So it's really important to block off time for these clinics. Your referral base can be from many resources. So of course your own patients are going  to become pregnant, and you can put in, you can have them come into your epilepsy pregnancy clinic. You can have internal referrals from your own  epilepsy colleagues just during the time of pregnancy. So you can do all the counseling and manage blood work and things like that. You can get referrals  from OBGYN or maternal fetal medicine within your own institution. A lot of times they get these referrals that are high risk OB patients, and their own  neurologist doesn't want to follow the levels. They feel uncomfortable during times of pregnancy. And so the OBGYN is kind of just monitoring the levels, not  knowing what to do with the medication. So this is a great way to get referrals and then of course you can get it from your regional clinic and hospitals again  sometimes other people in different communities may not be comfortable treating patients that are pregnant during this time and so you know we can absorb that for them do all the  right counseling you know really get updated lab work and then refer them back when when they're finished with their pregnancy.  And I think one thing that me and Dr. Valizer talked about in our first discussion together when we were going to give this  presentation is that we wanted everyone to know that you don't have to have like a million resources to start a specialty  clinic you just have to have an idea you just have to have you know some passion for it. It can be one person that's interested in that starting the  clinic and that's what we did personally in our own institutions and it can be really successful.  If you can work with your department again to create some dedicated time I think that can be really helpful so you can help get referrals and quicker you can create your own clinic  structure. So I gave you a model that had four clinic visits if that's not within your goals or that doesn't seem feasible you could  do two clinic visits you could do a first trimester and a third trimester as long as you're getting all of that counseling out there I think that's what's really important.  And a lot of times the monthly lab work can feel burdensome to like send reminders. It is a lot of work and so if you don't feel like you have the  bandwidth for that you know some of that ownership can be on your patients so you're going to brainstorm with them on how to  be on top of getting the lab work every month but you can give the ownership to them if you have many resources in your institution.  I think partnering with maternal fetal medicine is a really nice idea.  I have my clinic with maternal fetal medicine and it's so nice because we can have one patient that sees both of us during the same clinic visit.  So that helps with show rate that helps with compliance and it's also nice to bounce ideas off on each other. So at every clinic I think we're both asking each other questions  like what would you do in this situation or what would you in this situation. And we have immediate access to each other.  You can keep an epilepsy pregnancy list you can have a dedicated nurse or ma reviewing the list sending out reminders looking at lab work for you red flagging things for you if you  have those resources you can build an epilepsy pregnancy registry collect variables and outcomes work with your research  coordinators so they can update frequently and accurately and you can start to see trends your own trends that are going to be  meaningful and important and then you can work with marketing and outreach. I think you know a lot of times we have all this information we  learn all these and for all this information from these conferences and then you know there's this gap of care of really like giving this information to the community to  our patients and we all need to do a better job with that I think.  And so we can make patient information packets physician referral cards you can have a dedicated Web site for your clinic you can give presentations to you know regional  neurologists and OBGYN so how does this impact clinical care and practice establishing a clinic model for epilepsy pregnancy patient I think can be done on multiple levels and you  can have a lot of resources or you can have very little resources but if you have a good idea then I really think you can  make it happen and having a strategic plan and model of care can be really helpful when you're trying to discuss these ideas with leadership and administration and I'm going to  hand the rest over to Dr. Bell as Ruiz Hello.  So I have the task to very quickly and efficiently in the next seven slides convince you that adding all this work to your clinic it's worth it because it actually improves  patient care and outcomes.  So first I want to present a publication from the International and European Pregnancy Registry and in which they perform an analysis of the data from the international  their international registry to evaluate the changes in prescribing patterns of anti-seizure medications in  pregnant women with epilepsy over time and how this impacted the risk of major congenital malformations and what they found was that as the prescribing as the years passed  by prescribing of some of the older medications associated with a higher risk started progressively decreasing significantly so people started prescribing less valproate less  phenobarbital and more of the newer medications that are associated with a lower risk. As we can see there over time we started prescribing more and  more Lamont region which has one of the lowest risk possibles and very close to that of the general population as well as levity acetam and as the years pass by and the prescription  patterns change also the risk of major congenital malformations change.  So over the last 10 to 13 years there has been a significant decrease in the risk of major congenital malformations especially of those that are associated with the need of our  potentially associated with the need of surgical correction and that can be very impactful in the fetus and in the infant  such as the cardiac malformations hypospadias and neural tube defects. So it's totally worth it taking time even before women are  pregnant to orient them about this risk and to adjust in the medication to use medications with the lowest risk possible at the lowest dose possible.  And what about checking out those levels seems like a lot checking a level every month but we know that when in pregnant women with epilepsy levels can start to decrease as early as  the fifth week of pregnancy especially for the motor gene which we prescribe so frequently and when levels decrease by 35  percent or more from baseline from the ideal baseline we then start seeing an increased breakthrough seizures and in order to prevent that we develop this model in which we monitor  the antiseizure medication levels and adjust to those accordingly to achieve the ideal pre pregnancy level at which the woman was seizure free.  However until recently we had not prospectively look at the question is this effective. Is this actually having the effect of decreasing breakthrough  seizures in pregnant women with epilepsy.  And I have the data of the maternal outcomes and developmental effects of anti epileptic drugs that was published on this question.  This is a prospective multi center study with 20 centers across the United States and they looked at the seizure frequency in 299 women with epilepsy and a control group of  93 women and they look at their seizure frequency during  pregnancy and the peripartum time and then during the postpartum time defined as six weeks to nine months and they compare the seizure frequency with that of the control woman  which were healthy pregnant woman during sorry pregnant woman non pregnant woman with epilepsy and then this pregnant woman with a non pregnant woman with epilepsy of course were  not really having levels monitoring monitored because of  expected decrease but mostly as a comparison over the same time frame.  And what they found is that during these time frames both groups surprisingly had similar amounts of seizure a breakthrough seizure so the woman the same amount of women remain well  control the same amount of women more or less 23 25 percent actually had an increase in seizure frequency. But what what happened is when they look at how often the  antiseizure medication levels were checked in pregnant woman with epilepsy and versus non pregnant woman with epilepsy they realized that all that 74 percent of pregnant women with  epilepsy had at least one adjustment of antiseizure medication dose based on the level throughout the pregnancy meaning that these women actually remain with a  comparable seizure control because their antiseizure medication levels were actually being checked and their doses were being adjusted.  And from the states from the same study also there's some prospective data on breastfeeding and what they found is that the approximately 49 percent of all antiepileptic  drug concentration in nursing infants of three hundred and forty five infants in this study 222 were breastfed and from those 220 to 49 percent of these drug concentrations were  less than the lower limit of quantification meaning that the levels in the infant are significantly lower than the levels measured in the mother and in most cases negligible or  very low. And the data from the money studies suggest as it was published most recently in 2021 that breast the infants that were breastfed at two years old actually have comparable  outcomes to that of the healthy pregnant woman that were not on antiseizure medications and there's no risk in terms of cognitive outcomes from breastfeeding on antiseizure  medications. So we encourage all women with epilepsy to breastfeed with a very few exceptions in women in which are on sedating  medications that can actually result in sedation of the infant.  And how these can impact clinical care is that all this work that we do in clinic actually have resulted in very outcomes for our patients.  Counseling patients spending the time on changing antiseizure medication actually result in lower risk of major congenital malformations.  Monitoring the antiseizure medication level so closely results and lower amount of breakthrough seizures in our patients and counseling on breastfeeding results and more  women actually breastfeeding with little to no risk from the antiseizure medications themselves and with all the known benefits that already are have been described in the general  population.  So I just want to end saying that treatment and counseling needs to be individualized including the information regarding antiseizure medications more level monitoring.  We have these models of care and then how we implement it depends  on our resources but also on the patient that we have in front of us and our patients own resources and we need to take that into consideration.  Thank you all for staying and for your attention.

Video Summary

The video presentation, led by Dr. Sirita Maturu and Dr. Nemi Vélez-Ruiz, discusses models of care for pregnant women with epilepsy. The focus is on integrated clinic systems that provide dedicated care through all pregnancy stages, including postpartum. This model comprises structured patient visits in each trimester and postpartum, focusing on topics like medication effects, neurodevelopmental outcomes, and patient education, especially regarding drug safety, folic acid intake, and breastfeeding. Adjusting medications as necessary and tracking health through consistent lab work are key components of the care provided. The presentation highlights the success of these models at different institutions and encourages setting up such clinics even with limited resources by underlining the importance of defined goals, strategic planning, and collaboration with other medical departments. Supporting data are cited showing improved outcomes, including fewer congenital malformations and better seizure management, confirming the clinics' positive impact on patient care.

Asset Subtitle

Presenters:
Naymee Velez Ruiz, MD, FAES, is an Associate Professor of Neurology at the University of Miami Epilepsy Center, which she joined in 2015. She is the Director of the Jackson Memorial Hospital EMU & EEG Lab. She is an Attending Epileptologist at the University of Miami Hospital and Clinics. She is Director of the Women & Epilepsy Program, and Epilepsy Fellowship Director since 2017. Her interests include the surgical treatment of intractable epilepsy and women issues in epilepsy. She is Site PI for the Maternal Outcomes and Neurodevelopmental Effects of Antiepileptic Drugs Study. She is Fellow of the American Epilepsy Society and Contributing Editor for Epilepsy Currents.

Sarita Maturu, DO, is an Assistant Professor of Neurology in the Epilepsy Division at The Ohio State University Wexner Medical Center. She is currently the Interim Co-Chief of the Epilepsy DIvision as well as the Director of Neurology Specialty Clinics. Her interests include treating women with epilepsy and transition care for the young adult/adolescent population. Pursuant to this passion, she has started an Epilepsy Pregnancy Clinic and an Epilepsy Transition Clinic in conjuction with Nationwide Children's Hospital. She is also on the board of My Epilepsy Story which is a non profit organization for women with epilepsy.