Adrianna Bermeo-Ovalle, MD (Host): The main purpose that brings our community together is our desire and resolve to offer people living with epilepsy the best alternatives of diagnosis and treatment; the ones that will empower them to live their best possible life. But what does that mean in practical terms? How do we put that intention into clinical practice? The National Association of Epilepsy Centers, NAEC, has taken a careful look at this question. We are delighted to have the opportunity to discuss together the 2023 Guidelines for Specialized Epilepsy Centers that will inform epilepsy care in the present and the future.

Welcome to Episode 7 of Epilepsy Currents Podcast. I am your host, Adriana Bermeo. I am the Senior Podcast Editor for Epilepsy Currents, the official journal of the American Epilepsy Society. Let me first welcome Dr. Susan Arnold. Dr. Arnold is Adjunct Professor of Pediatric Neurology at Yale University School of Medicine.

She's the Senior Author of the Executive Summary of the Report of the National Association of Epilepsy Centers, entitled Guidelines for Specialized Epilepsy Centers, which was published by the Green Journal Neurology in February of 2024. Dr. Arnold, thank you very much for joining us today.

Susan T Arnold, MD: I'm very happy to be here.

Host: It is also my pleasure to welcome Dr. Fred Lado. Dr. Lado is the president of the NAEC and professor of neurology at the Zucker School of Medicine in Hofstra University in Long Island, New York. Dr. Lado is the first author of the guidelines, which you can find linked to the Epilepsy Current site and at the NAEC home site. Dr. Lado, thank you for being with us today.

Fred A. Lado, MD, PhD: Thank you, Adriana, for the opportunity to speak with you.

Host: Great. For our listeners and our readers of Epilepsy Currents, you can also find an It's Currents commentary authored by Dr. Katherine Nichols and published in the May 2024 issue of Epilepsy Currents. So let's get this conversation started. Dr. Lado, I will start with you. Could you please explain to our listeners the role of the National Association of Epilepsy Centers in setting national standards for epilepsy care, especially for those dealing with drug resistant epilepsy?

Fred A. Lado, MD, PhD: So the NAEC was founded in 1987, and since almost the beginning, has published quality standards around the functioning and the care given in epilepsy centers. These standards have been updated approximately every 10 years. And these standards are different from the accreditation program that the NAEC runs. That accreditation program began in 2016. The guidelines have been the basis for developing accreditation standards, but for accreditation standards, centers have to provide evidence that they're meeting the guidelines. Guidelines are really focused on what is best practices. What is the best level of care that patients should be receiving?

Accreditation standards are focused on, are centers implementing these guidelines? Are they actually providing these services? Many of the recommendations that you'll find in these new guidelines are already present in prior versions of the NAEC guidelines and in the accreditation program, but many of the guidelines in the current version are new and sort of stretch the boundaries of areas that the NAEC is addressing as part of comprehensive epilepsy care.

We recognize that in sort of moving the goalpost somewhat, that in expanding the scope of guidelines, that epilepsy centers need to have adequate resources to implement. And so the process of incorporating these guidelines into accreditation is one that will unfold over the coming years, not all at once.

Host: Thank you very much for that answer. Can you just once more clarify what is the difference, how are the guidelines different from the accreditation process for the people in the epilepsy centers who may get a little bit nervous about all the new recommendations that come in the guidelines? What is the urgency for them to implement all of these recommendations into the care they provide for their patients?

Fred A. Lado, MD, PhD: Yes, this is a topic of great sensitivity in epilepsy centers. The guidelines, as we'll discuss are really the product of a consensus across sub specialists, patients, administrators, EEG techs, certainly epileptologists, about what makes a good epilepsy care, what makes a successful epilepsy center in taking care of patients.

But the guidelines are sort of a recommendation of best practices. They are not accreditation standards. Accreditation standards are what the NAEC uses to judge whether a program is meeting the requirements for NAEC accreditation, and that might involve showing reports, might involve doing a certain volume of particular cases or surgeries, it has different specific requirements.

The accreditation standards that the NAEC establishes and changes and updates from year to year, are informed by these guidelines. But the guidelines are a statement of what is considered best practice. The accreditation standards are a statement of what centers have to do to become accredited.

Host: Thank you very much for clarifying that for our listeners and our readers. Dr. Arnold, we understand that these guidelines were developed through a process that is called evidence informed consensus. Can you please elaborate on the methodology and how does it influence the recommendations provided? And if you could, how are they different from the prior guidelines published by the NAEC?

Susan T Arnold, MD: So, the idea when you're writing guidelines is really to have an evidence based process where you survey the literature, collect information, grade the evidence that you collect, and then write your recommendations based on that evidence with the level of the evidence supporting your guideline.

And that works very well for clinical treatment guidelines, where you can search the literature and find studies that compare, for example, one intervention to another. Unfortunately, for an operational guideline, such as the one we were writing for epilepsy centers, the literature doesn't have a lot of information.

And where we do have evidence, it's often not of very high quality and it has gaps. And so in that circumstance, you go to expert opinion. And so what we did is follow an evidence informed process; where we surveyed the literature, we gathered all the information, and then we went to our panel of experts. We educated them on what evidence was in the literature, discussed it as a group, and then created a consensus recommendation using the panel of experts.

What was really different, I think, this time around is that our panel of experts didn't just include the neurologists and neurosurgeons that we've included in the past, but a much broader panel of stakeholders. And so we had our neurology nurses, we had our EEG technologists, we had social workers, neuropsychologists, and most importantly, we had people with epilepsy and their caregivers, and all of that group together created the consensus recommendations for the guidelines.

Host: Thank you very much. It looks like everybody who will be affected or who has a stake in the matter was invited to participate. Dr. Lado, we will not have time in one podcast to discuss all the 52 recommendations, but, if you could walk us through the highlights of the recommendations, initially for the inpatient portion and the surgical programs, what are the items that you want our audience to remember from this podcast?

Fred A. Lado, MD, PhD: Yes, as you point out, Adriana, there are 52 recommendations in the current guidelines. Some of these are similar to our recommendations in the 2010 guidelines, but many have been updated.

With respect to inpatient services, we've always focused on resources. Do you have an EMU? Do you have the appropriate personnel?

In the current guidelines, we have a greater focus on the processes that take place. Are we providing a safe environment in the EMU? Do we have appropriate protocols for preventing escalation of seizures or acceleration of seizures in patients where medications have been reduced? And we have more emphasis on process in the multidisciplinary conferences. And this is an area that received a lot of attention in the current guidelines. We really make clear that the multidisciplinary conferences should be attended by a multidisciplinary group. And in those conferences, patients should really be considered with the full range of different surgeries that might benefit them or procedures, not just what a particular center might be best at doing, but really the full gamut.

And so, the patient can be confident when they go to an epilepsy center that they have received the most comprehensive evaluation and the recommendation of course of treatment most likely to render them seizure free. And then of course, we think that, as Dr. Arnold said, communication and informing patients throughout this process is important.

Host: Dr. Arnold, what about outpatient services? What encompasses comprehensive care for patients with epilepsy in these days and how do you see the future of epilepsy care in the outpatient setting?

Susan T Arnold, MD: Well, as Fred said, this is really the majority of epilepsy care is the outpatient care, not the inpatient areas we've focused on in the past. And so it was a very new thing for us to write guidelines addressing this very broad area. And it was really a struggle for the panel to figure out what was important and what to focus on, because of course everything is important when it addresses quality of care.

So we wrote some guidelines that address some of the American Academy of Neurology quality measures for outpatient care, and that was maybe our starting line and then we really listened to the panel, and in particular, we listened to our patients with epilepsy. We listened to, their caregivers, and we listened to the nurses and the EEG technologists who are often their advocates for us in the medical system.

And what we heard is that access to care is important, and as Fred mentioned, communication was important. And so we expanded our guidelines to those areas. We addressed centers needing to look at their access to outpatient clinic appointments and doing what they can to prioritize the sickest and the most urgent patients so that they're not waiting months for an appointment.

We addressed communication with patients, both using our electronic medical records and also using telehealth, which is something that was very new to all of us when COVID hit, but I think we've all learned a lot about managing telehealth services, since the COVID epidemic. Another thing that we looked at was screening for special needs and related complications for people with epilepsy; things like mental health needs, things like socioeconomic needs, barriers to obtaining their medication, for example. And finally, we looked at servicing special populations. Those that might have had additional needs such as neurodevelopmental difficulties, women with epilepsy and in particular patients with other mental health needs, and our patients with psychogenic non epileptic events.

 Those are all patients that in the past have not really been included in the guidelines that we have written.

Host: Thank you, Dr. Arnold. It seems like between the inpatient and the outpatient updates, we will be able to see the patient in many more dimensions than we do currently, and that really makes me feel hopeful for the care that we provide. Dr. Arnold, what about pediatric epilepsy centers? Are there any specific considerations regarding pediatric epilepsy care?

Susan T Arnold, MD: Absolutely, and as a child neurologist, the pediatric population is close to my heart. And, throughout our guideline writing process, we tried to ask ourselves as we addressed each area, is there anything particular that we need to look at differently for children and for centers that treat children? And so you will see in these guidelines, really a greater emphasis, not just on adapting guidelines, emergency managment procedures to the needs of children, but also on the very specialized services that children require. Those include things such as Child Life Specialists, educational material that's focused on the needs of children and their parents. Pediatric anesthesiologists, so that when a child goes for an imaging study, they can be safely sedated, and we can have the highest quality image that we can obtain to make the best decisions for their care.

In addition, we discussed special services that are relevant for both adults and children with epilepsy, but often have a greater role in the management of children. And among those were dietary services. Dietary therapy has a very special role in certain pediatric epilepsies, in children with certain metabolic disorders, and also in children with certain very severe epilepsies.

And the guidelines anticipate that centers that serve children either will have a dietician or will be able to refer to a center that has a dietician to provide a full spectrum of therapy, including dietary therapy. Another area would be genetic services. In the last 15 or 20 years, the use of genetic testing has just exploded and has become critical in the evaluation and in the management of epilepsy, both for children and more and more recognized as being important in adults as well.

And the guidelines discussed the importance of having genetic testing available, understanding which patients will benefit most from it and how to direct the testing towards those populations that will have the most benefit. And then providing genetic counseling services and genetic specialists to manage patients with complex genetic problems.

We recognize that this is a big ask for a lot of centers. We also recognize there are a number of adult focused centers that do a very good job of offering services to older children and teenagers with epilepsy. But we really tried to put ourselves in the shoes of the parent of a child with epilepsy looking for a pediatric epilepsy center.

And for that parent and for that child, a center that advertises itself as a pediatric epilepsy center, the panel felt really had to offer a very broad range of services or have them available by referral, if not within the center.

Host: Yeah, thank you, Dr. Arnold. That really sounds like an amazing perspective of being able to include all of that in the offerings for our patients from the epilepsy centers. But as we know, managing comprehensive epilepsy care can be resource intensive. Dr. Lado, how do the guidelines address the challenges centers may face in implementing these standards, especially when you think about resource limited environments?

Fred A. Lado, MD, PhD: So we gave this lot of thought. And you're right. Some of these guidelines are resource intensive. I think it's important to recognize from the beginning that general neurologists, primary care doctors often play a role in the care of individuals with epilepsy and often offer important and excellent services to the patients with epilepsy.

So these standards are not meant to say that all care for patients with epilepsy must always check every box of these guidelines. Rather, these are to say that comprehensive epilepsy centers meet a higher level of care for patients with epilepsy, and doing so, need to have more resources.

Now, the transition from the current state to the future state, where we would like more and more of these resources to be available, can't be abrupt. There needs to be sort of an on ramp so programs can gradually develop resources where they're necessary. And so, the process of implementing the guidelines, rolling them out in the form of accreditation criteria, is a process that will unfold over several years.

It's not going to be from one year to the next. We hope that by outlining what these guidelines contain and where we're headed with accreditation standards, that epilepsy centers will have both the time as well as the facts to make the case for their hospital administration, for their administrators, to commit the resources necessary to keep the program going.

Host: Thank you very much for that answer. That would certainly be very welcome by epilepsy centers all around the country and even internationally because NAEC sets guidelines that can be used beyond our country for sure. Dr. Arnold, can you please walk us into the future? How do you see these guidelines influencing future development, future accreditation, and as you know very well the process, what areas or aspects need further refinement or further research?

Susan T Arnold, MD: As we've mentioned many times already, with the fact that the scope of these guidelines is so much broader than what we have done before, we recognize a couple of things. First of all, I'm very excited for people developing new centers, we've given them a much broader and more comprehensive list of criteria to work on to understand what an epilepsy center is and that it's more than just an epilepsy monitoring unit or a surgical program.

So I think that's key. Secondly, and we've also touched on this a little bit, the guidelines are so much broader that we can't just put all of them into the accreditation process. There's going to have to be a period of adapting our accreditation process to get its arms around the new guidelines, if you will.

As Fred mentioned, when we have guidelines, when we have something written down on paper, centers can take that to their institutions and try and get the resources they need. And our hope is that by publishing the guidelines, as we take time to phase them into the accreditation process; by the time we get there, our centers will be prepared.

They will have had the lead time to get the resources they need to meet some of these things. Looking toward the future, one of the things we learned is that 10 years is just too long to go between guideline processes. And NAEC is looking at a way to address guideline development that would be much more responsive to changes that are going on in the world of epilepsy treatment.

And so that we're not bringing a big slice of new information to the table every 10 years, but providing more real time, if you will, updates in our guideline process. And finally, there were a number of areas that we simply didn't address in the current guidelines, not because there was a lack of interest, but because either the evidence base wasn't there yet, or because we felt that we had simply gone as far as we could with one set of guideline revisions. And some of those things include looking more at outcomes because our goal for treating epilepsy is not just to have the best process within our epilepsy center, but also to have the best outcomes for epilepsy interventions. And I think that's an area that will take time to address, but eventually we'll need to look at how centers look critically at what they're doing and what their outcomes are and use that to continue to improve the care they provide to people with epilepsy.

Host: Well, it certainly feels like we are making steps into a brighter future for the care of our patients with epilepsy. I would like to invite our listeners to log in into the Epilepsy Currents website and click into the link to the National Associations of Epilepsy Centers guidelines into the original papers which are cited in our site as well.

I want to thank very much our guests and thank our listeners. I want to especially thank the National Associations of Epilepsy Centers, who is the sponsor of today's episode and came today to share these important guidelines with all of us.

I want to thank Dr. Rohit Marwar and the SAGE podcast production team. We look forward to having you join our next episode. Remember to subscribe to Epilepsy Currents podcast wherever you get your podcast and send us your feedback, suggestions, or questions through our website, EpilepsyCurrents.org, and don't forget to follow us on ex former Twitter, at AESCurrents.

Until next time, everybody.