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Seizure action plans often are aimed at a subset of people with epilepsy, particularly children. Dr. Lucretia Long discusses how these plans can be used to engage and educate people with epilepsy, their families, and the larger community.
Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.
Podcast Transcript
[00:00:08] Dr. Lucretia Long: I'm Lucretia Long. I am a clinical associate professor of neurology at Ohio State University and also an outpatient epilepsy nurse practitioner.
In general, I think there is a consensus that all seizure action plans should be structured, customized educational tools that are really aimed at engaging patients and care partners to actively manage their conditions. So whether it's an acute seizure action plan where we're focusing on immediate intervention or general seizure action plan, the overall consensus is that those plans really allow patients and their care partners to be active in terms of managing their condition.
[00:00:49] Nancy Volkers (ILAE): Got it. And is there any sort of consensus on who should have a seizure action plan? Is it everyone who has epilepsy? Is it everyone who has a drug resistant epilepsy?
Are there different groups that it's…
[00:01:04] Dr. Lucretia Long: Yeah, you know, I love that question. And that is something that we… I'm on a couple of advisory boards and we often spend hours talking about what patients are candidates for seizure action plans. I think, in general, most healthcare professionals in the epilepsy space would agree that sort of, as you mentioned, those patients with pharmacoresistant or intractable epilepsy patients who may frequent the emergency room patients with a history of clusters or repetitive seizures.
Those with a history of status epilepticus and some of those really difficult to treat epilepsy syndromes, Dravet, LGS. Most healthcare professionals would agree that those patients are candidates for seizure action plans.
Do all patients deserve a seizure action plan? I'm a huge advocate. I think any patient with a history of seizures or epilepsy deserves a seizure action plan. And I think it's really important that we start to think about changing the paradigm for what an action plan is. It's really an education tool. All patients deserve to know what seizure triggers are.
Every patient deserves to know what their specific seizure emergency is and a customized plan to intervene.
[00:02:15] Nancy Volkers (ILAE): So at the International Epilepsy Congress, you presented a study where you were talking about implementing seizure action plans and sort of an outpatient setting and making providers aware and measuring implementation rates of action plans over a certain amount of time, could you talk about that study a little bit? Why was it done and sort of the general methods and what you found?
[00:02:42] Dr. Lucretia Long: Absolutely. I'll be very concise. So we wanted to look at and evaluate the use of a structured seizure action plan in an adult epilepsy center, and I sort of highlight the word “adult” because, as you know, those of us in the adult world, we don't do as well of a job implementing seizure action plans when you look at the literature and in clinical practice. And so I wanted to figure out a way that we could implement this in an adult clinic.
So that was the primary aim. The second aim was really to look at provider and patient comfort and knowledge scores pre and post implementation. So this was during a clinic setting. We standardize the comfort score. We use a very simplistic acute seizure action plan that several colleagues and I published in Epilepsy and Behavior.
And we were able to support an improvement in utilization rates from zero to 51%. Our target was 50%, but we were very happy to exceed that target at 51%. We also were delighted to see an improvement, not just statistically significant, but clinically relevant improvements in knowledge and comfort scores in patients and their care partners.
And Interestingly, 98% of patients and care partners that we surveyed felt that all patients deserve a seizure action plan. And this is a little different if you think about the numbers and that 49% of patients that we studied out of the 204 patients did not receive an action plan.
And although time was a barrier, the other barrier was the provider's perception, to your earlier point, as to who deserves a seizure action plan. So, very interesting when you look at the potential disconnect between what patients feel they deserve and what health care professionals think they need.
[00:04:30] Nancy Volkers (ILAE): So pretty much all of the patients and families thought that they should have one, but not all of the providers felt that everyone should have one.
[00:04:39] Dr. Lucretia Long: That's correct. So there are cases and this is unfortunately not unique. I'm on a couple of advisory boards, as I mentioned before, and oftentimes, we are spending time discussing what patient group deserves an action plan.
There are some providers who feel that, for example, if a patient is seizure free, they may not need a seizure action plan. I disagree with that. I think all patients should be aware and empowered with knowledge for reasons that we discussed earlier, but I think we have to sort of change the paradigm to get healthcare professionals to appreciate that all patients should deserve to understand triggers, and their customized action in the event they were to have, for example, a breakthrough seizure.
We have many patients who have been seizure free for years and they have a breakthrough seizure. So they also should be educated on what to do in the event of a seizure emergency.
[00:05:31] Nancy Volkers (ILAE): What is a seizure action plan? What does it look like? What does it do? How does it help an individual or a family?
[00:05:39] Dr. Lucretia Long: The seizure action plan is a customized plan of care that not only allows patients and care partners to understand what their seizure triggers are, but also a document that supports a summary of what that particular patient seizure emergency is.
And it's customized because not all seizures are the same for each patient, as you know. So that plan should be very specific, very individualized and include not only an opportunity for patients and care partners to understand how to identify and better recognize seizure emergencies, but also how to understand seizure intervention, whether that's just basic first aid or rescue therapy. So an opportunity to educate patients on when and how to initiate rescue therapies and certainly when to call emergency services. Some seizure action plans are a little more comprehensive in that they have the maintenance anti-seizure medicines that patients are taking.
The one that we utilize was very specific, as you sort of alluded to earlier, in terms of being able to capture what to do in the event of a seizure emergency. All of them have contact information for the care provider as well as the healthcare professional.
[00:06:54] Nancy Volkers (ILAE): Great. Thank you. So, obviously, the benefit of having one of these for the person with epilepsy or their family is that they know what to do in case of an emergency. If X happens, you do this. If Y happens, you do that. Are there, what are some of the other benefits to them as well as to the system as a whole? The healthcare system, the provider's office.
[00:07:23] Dr. Lucretia Long: Absolutely. So we believe that if you can educate patients to implement emergency interventions early on that, we can reduce healthcare utilization, whether that's visits, hospitalizations and, of course, the cost that directly impacts health care utilization.
So we're hopeful that we can demonstrate this. There are a few studies that support that if patients use rescue therapies that they may have a reduction in ER visits, and we're hopeful that this will not only impact costs, but equally, maybe even more importantly, impact reduced morbidity and mortality in patients in care partners with epilepsy.
[00:08:05] Nancy Volkers (ILAE): And as far as challenges go, one of them was time to establish a seizure action plan. Are there strategies for addressing the time barrier or other barriers?
[00:08:18] Dr. Lucretia Long: I actually interviewed healthcare professionals at my facility prior to implementation to discuss and get their input on what the barriers were and time was the number-one barrier.
So this is not only something that I saw in my project, but also when you look at the literature, And certainly my experience in clinical practice, we are required to do so much in so little time. And so time is a huge barrier. And so one of the strategies that we were able to implement in our project was using a very simple, one-page, very cost effective and easy to utilize seizure action plan. So that's one strategy when you're looking at action plans to make sure that they are not overwhelming in terms of the time required to complete them.
The other is to have patients and care partners actually serve as participants in documenting and completing the seizure action plan. So, for example, we provided seizure action plans to every patient with epilepsy in our outpatient clinic and provided them with a description of how to complete the action plan. So they were able to collaborate on documenting their triggers. Some of them were very familiar with semiology. And so they were able to document that prior to having the healthcare professional finalize the seizure action plan.
And then other opportunities are consistent with implementing an electronic seizure action plan so that you can click a few buttons to allow for time efficiency, and then perhaps implementing advanced practice provider or nurse-run epilepsy clinics where they are specifically focused on educating and updating seizure action plans to kind of minimize some of the time constraints that we as healthcare professionals have to deal with on a day-to-day basis.
[00:10:05] Nancy Volkers (ILAE): Excellent. Are there other barriers besides time? And I guess you mentioned the possible perception of providers that seizure action plans aren't a priority.
[00:10:17] Dr. Lucretia Long: Yeah, Nancy, that is so important. And in fact, that was the second biggest barrier even when we control for time. So, the simplistic seizure action plan, allowing patients and care partners to participate and having triage nurses facilitate the completion of the action plan.
The perception that the patient didn't need it was the second biggest barrier. So I think we have to be very intentional in educating healthcare professionals on the importance of educating all patients about seizure action plans and, and emphasizing the importance of that regardless of what that patient's presentation is in our study.
Even patients whose seizures were controlled felt that they deserved a seizure action plan. So again, changing that paradigm, having the conversation and trying to better incorporate a seizure action plan as a metric for every single patient who presents with a diagnosis of seizures or epilepsy.
For those of us who are advanced practice providers, we can actually bill for those services. So we can bill the insurance company. We can have scheduled routine visits for patients newly diagnosed. They are automatically referred to our center. In addition to managing medications, we can implement these action plans. So there are some strategies that we can put in place that are cost effective that would be super helpful for patients and families.
[00:11:43] Nancy Volkers (ILAE): And what about reviewing or updating the seizure action plan? Is there a time that they should be reviewed? Is it an annual thing or whenever medications change or is it sort of an individual thing?
[00:11:58] Dr. Lucretia Long: Most of the action plans have a date for an annual review. I am not in agreement with that. I think that those action plans should really be revisited during every single clinic visit. And certainly when there's a change in the patient's clinical presentation, so a change in their specific pattern of seizures. And also, if there's a change in their response to the rescue therapies, and really, anytime there's a lifestyle change that would warrant adjusting the action plan.
So you think about our pediatric population who are transitioning to the adult space, those patients who are going from high school to college, if you are pregnant. There are some lifestyle changes that certainly would warrant changing or adjusting the action plan. But I think anytime there is a change in the patient's pattern, it should be revisited.
So I don't think annual is enough. I mean, obviously for your patient who's seizure free where you're only seeing them once a year, then that makes sense. But if you have a patient that you're seeing more frequently, I think making sure they appreciate and understand the action plan at every single visit is really important.
[00:13:06] Nancy Volkers (ILAE): So from a provider perspective, how does a provider get started with these? Are there easy places to find templates that they can use?
[00:13:16] Dr. Lucretia Long: Sure, so the Epilepsy Foundation of America and the Epilepsy Alliance are wonderful resources. They have a variety of different action plans. Some of them are available in different languages. And they're a little diverse so that you can sort of decide which action plan makes sense for you and your patient population again for us, it was this one-page acute seizure action plan—very quick, easy to implement.
Also, we are working on and we actually have at Ohio State the seizure action plan embedded into our electronic system. And so we're hoping that maybe we can disseminate that across other institutions. So that, you know, we spent 1,000,000 hours and an equal number of days trying to finally get this into our electronic records.
So we can hopefully help and disseminate that across other institutions to facilitate time as a barrier and improve those resources, whether it's in the or primary care, general neurology dissemination is key in terms of outcomes.
[00:14:21] Nancy Volkers (ILAE): Great. Thank you. My last question has to do with lower-resource areas. So areas of the world where they may not have reliable emergency services and they're not going to be getting rescue medications. They just are not available. How can seizure action plans help people in those areas?
[00:14:40] Dr. Lucretia Long: I really think that is another super, super important question and you're right, I mean, when I was in Dublin, Ireland, I really had an opportunity to learn from some of my colleagues in different countries about the barriers, the disparities in the huge treatment gap.
There are some places, as you know, that have a 100% treatment gap. That means they have no resources for epilepsy care. Even though there are limited resources, I feel very strongly that we can customize these seizure action plans to focus on educating patients. I think the first thing we need to do is to better appreciate the culture and to collaborate with health care professionals that live and reside in those countries so that we can understand what resources are available.
The second point is that we can customize that action. plan to focus on education. It doesn't matter whether you're in a lower or higher social demographic index area. Seizure triggers are seizure triggers, and so we can educate patients on what those triggers are. Seizure first aid, although there are limitations on rescue therapies, ensuring that people aren't putting items in the mouth, making sure that they're turning that patient on the side, minimizing any related injury—those are all really, really important parts of a seizure action plan that can be implemented in some of these low resource countries.
I think the bigger challenge and one that I'm really very interested in and being a part of is collaborating with organizations to allow for improved virtual resources for diagnostics for low-resource countries and also educational interventions where we can help sort of attack the stigma that is so prevalent in some of these low resource countries where they still feel that epilepsy is contagious or that the person who has it is possessed.
And so I think we have the power to educate within the seizure action plans and customize it so that it makes sense for that specific country. A bigger challenge that we have that I think we need to tackle is collaborating with governing areas, organizations and other resources so that we can provide medication and devices to some of these low-resource countries and really collaborate to help impact outcome. So, we have work to do, but I think if we collaborate and we innovate that we can bridge the gap, not only here in the United States as we look at the importance of seizure action plans, but also to help facilitate the challenges that our colleagues in low-resource countries have.
[00:17:24] Nancy Volkers (ILAE): Yeah, that's a great point that you make about the seizure action plan really being an educational tool. I don't know what the research says, but I know that there's a percentage of people with epilepsy that don't know what kind of seizures they have. They don't know their seizure triggers. They've never been asked about them or asked to track them so that does seem like a way that you could not only educate the person with epilepsy, but then, I mean, that's how we reduce stigma, right? Education.
[00:17:53] Dr. Lucretia Long: Absolutely. Educate. Educate. Absolutely.
[00:17:57] Nancy Volkers (ILAE): Yeah. I am interested if you're doing any other research with the seizure action plans and then. Anything else that you want to mention?
[00:18:06] Dr. Lucretia Long: So our initial study was really to look at immediate knowledge and comfort for health for patients and their care partners. We are now looking at long-term outcomes. So once we've implemented the action plan, over a 3-, 6-, 12-month interval, can we in fact see a reduction in ER visits? Do we see a reduction in seizure clusters? How do we sustain knowledge and comfort across the time interval to make sure that we are maximizing the acute improvements and maintaining those over time and looking at ways that we can better Improvements?
This is a wonderful resource in terms of being able to disseminate, but really trying to make sure that we publish this information and also that we can continue to study marginalized populations, so how can we better direct and customize these action plans for some of these marginalized populations. You know, we know here, even in the states, there is a specific group of patients that are diagnosed and managed in the emergency room. African Americans, for example, are more likely to be diagnosed and managed in the ER. And so how can we capture that audience for seizure action plans to improve outcomes are all sort of areas for future research.
[00:19:31] Nancy Volkers (ILAE): Was there anything else you want to mention?
[00:19:38] Dr. Lucretia Long: No, I think we've captured most of it. Just sort of ensuring that we can again, change the conversation to incorporate seizure action plans as education tools for everyone with epilepsy and that we're customizing those. And then the importance of sustainability and also dissemination, I think, are really crucial areas as we look at moving forward with improving quality of life for patients and families with epilepsy.
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Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 125 national chapters.
Through promoting research, education and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.
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