Thank you for attending today's webinar, The Path to Equitable Care in Epilepsy. Please note that this webinar does offer continuing education credit after completing the evaluation. You will be taken to the evaluation immediately after the webinar. You will receive an email when the on-demand version is available. Before we get started, I would like to take a moment to acquaint you with a few features of this web event technology. At any time, you may adjust your audio using any computer volume settings that you may have. Should you encounter any audio issues, refer to the meeting information pod for further instruction. On the right-hand side of your screen, you'll see the text Q&A window. There's a large window which holds all of your sent messages and a smaller text box at the bottom where you will type in your questions. To send a question, click in the text box and type your text. When finished, click the send button. All questions that you submit are only seen by today's presenters. Your questions will be responded to in the order in which they were received and will be addressed at the end of the presentation. I would now like to introduce today's moderator, Dr. David Ficker from the University of Cincinnati and an AES Online Education Committee member. Dr. Ficker? Great. Thank you so much for everyone for joining the presentation today. As mentioned, I'm Dr. David Ficker. I am chair of the Online Education Committee at the American Epilepsy Society and professor of neurology at the University of Cincinnati. We are pleased to have Dr. Elaine Kiriakopoulos join us to present the path to equitable care in epilepsy. She is assistant professor of neurology at the Geisel School of Medicine at Dartmouth and director of the Hobscotch Institute for Cognitive Health and Wellbeing and the Community Epilepsy and Self-Management Training Center at Dartmouth-Hitchcock Epilepsy Center. She's a graduate of McMaster University Medical School in Ontario, Canada, completed her neurology residency in epilepsy and neurophysiology fellowship in Boston at Beth Israel Deaconess and Harvard University. She has held numerous national nonprofit leadership roles focused on improving systems of care for people living with epilepsy. At Dartmouth, her current research and programmatic efforts target building multi-sector partnerships to reduce disparities in the care of people with epilepsy, addressing social determinants of health and ensuring the most vulnerable populations have access to quality epilepsy care and community resources. Her work re-imagines health system constructs integrating telehealth accessible self-management interventions that reach patients in their homes and diverse communities to help improve health outcomes and quality of life. She has a multifaceted professional experience as an academic epileptologist, national nonprofit leader and public health researcher that informs her work at Dartmouth. Dr. Kyriakopoulos, thank you for presenting today and I will turn it over to you. Thanks so much, Dr. Ficker and thanks to everyone who has joined us today. It's good to have you with us. Provided here are the disclosure for today's presentation and we'll jump right in. Listed here are our learning objectives for today which include taking a look at public health challenges in epilepsy, reviewing the diagnosis of epilepsy and what it means to be resistant to medical therapy in epilepsy. And we'll also look at common causes of epilepsy and treatment options for people with epilepsy and spend time reviewing comorbidities in epilepsy, focusing in on mental health and cognition. We also wanna share with you evidence-based self-management programming in epilepsy and how as a provider these resources are available for you to share with your patients either through adoption in your own practice or via referral. Today's learning supports an overarching goal of making progress towards health equity for people impacted by epilepsy. And to reach people, we know that there will need to be a reimagining of care pathways and partnerships, a growth of knowledge and competency for both traditional and non-traditional members of the healthcare workforce and the mobilization of community partners so that we can reach the most vulnerable populations and work towards empowering all people with epilepsy with high quality epilepsy care and support. Why is it important that we make these efforts in epilepsy? Well, one consideration is disease burden and shared here is a map from the Centers for Disease Control and Prevention which plots the prevalence of active epilepsy across the US. Epilepsy is a public health problem. In 2015, 1.2% of the US population had active epilepsy. Two-thirds of people living with epilepsy also live with four or more other chronic conditions. And in 2014, epilepsy ranked as one of the top 10 reasons for hospital stays paid for by Medicaid in the US. Epilepsy poses substantial individual and societal burdens that require heightened public health action. Now, along with the diagnosis of epilepsy come a host of potential medical challenges. And you can see them listed here and I wanna highlight delayed diagnosis, the high percentage of people with uncontrolled seizures and the well-established fact that a person living with uncontrolled seizures has increased risk for both morbidity and mortality. There are frequent comorbidities and common and complex ones are cognitive dysfunction and mental illness impacting about one in two people with epilepsy. We also know that epilepsy is challenging to self-manage and disclosure of the illness is often hindered by stigma, which is also experienced by about one in two people with epilepsy. Often accompanying medical challenges come well-known social challenges, which are listed here. With the graphic on the right highlighting data demonstrating the low household income challenge and the impact of epilepsy on families, we know that approximately half of families impacted by epilepsy. In epilepsy, many factors contribute as to whether or not an individual receives high quality care and these include socioeconomic status, education and transportation. Others such as lack of employment, lower household income, limited insurance coverage and long commute distances to healthcare providers and it's important to consider where people with epilepsy access care. A national health interview survey data has been used to track the distribution of visits to general practitioners and epilepsy specialists. Close to one out of three people with epilepsy had received their only care for epilepsy from a primary care provider in the past year and at least one out of two people had seen both their primary care physician and a neurologist. This supports the importance of multi-level primary care providers staying knowledgeable on epilepsy care. While the data shown here allow us to see an improvement in visits to neurologists and epilepsy specialists for people with active epilepsy over time, there remains room for further improvement. In particular, there's reason to be concerned that patients with uncontrolled seizures are not receiving adequate care. Studies support that one in four adults receiving treatment for active epilepsy from a general practitioner reported at least one breakthrough seizure in the past year. As we've mentioned previously, adults with uncontrolled epilepsy have increased risks for multiple adverse health and social outcomes and early death. And epilepsy clinical practice guidelines share that referral for specialty care with a neurologist or epileptologist is critical for proper diagnosis and treatment when seizures are not controlled. This recent 2021 study examined primary care provider attitudes toward and experiences with referral to specialty care of their patients with new onset seizures or existing epilepsy. And what emerged from the analysis of data from a sample of 1,284 providers, including family practitioners, internists, nurse practitioners, and pediatricians was that most primary care providers do refer their patients with new onset seizures to a neurologist, particularly to help determine or confirm the diagnosis of epilepsy and to initiate appropriate treatment. However, strikingly, 40% of PCPs did not indicate a referral if their epilepsy patient was unresponsive to treatment. And also concerning, less than one third of all practitioners consulted seizure treatment guidelines. This pattern of care is critical to appreciate because it's well-established that adults with uncontrolled epilepsy are at high risk for negative outcomes. All right, having shared this brief look at some of the population health challenges that prevail in epilepsy, we're going to move ahead to begin an overview of epilepsy and seizures. Epilepsy is defined as a neurological disease characterized by recurring seizures, not otherwise provoked by acute injury, another medical condition, or another health emergency. Now, some people will interchange the word seizure disorder for epilepsy when they're describing the condition of recurring seizures. More formally speaking and accepted among clinicians is that a diagnosis of epilepsy is made when someone has two unprovoked seizures occurring greater than 24 hours apart, or if a person has one seizure with a high chance of having another. So if someone were to have one seizure and testing demonstrated an abnormality, for example, a structural lesion on brain imaging or abnormal brain waves on an electroencephalogram, that person might still receive a diagnosis of epilepsy because of a likelihood or increased risk that they have for recurrent seizures. The definition of epilepsy also includes that if a person has been diagnosed with a syndrome that includes seizures, even if they only have had one seizure, that person may still be diagnosed formally with epilepsy. Receiving a diagnosis of epilepsy does not indicate cause or prognosis. Let's look a little closer at seizures. We know the human brain is both complex and dynamic and is made up of billions of cells that communicate with each other by sending and receiving messages in the form of electrical and neurochemical signals, and that the electrical activity in the brain is normally very carefully balanced. Seizures associated with epilepsy occur when there is abnormal and excessive electrical activity that temporarily disrupts brain function, and that's depicted here in this graphic, which is a snapshot from an electroencephalogram recording. Now, it's important to keep in mind that every brain has the potential to seize, that seizures are incredibly common. One in 10 people will have a seizure at some point in their lifetime. So who has epilepsy? Anyone can have epilepsy. Epilepsy and seizures can develop in any person at any age and of any race or ethnicity. 3.4 million people in the U.S. live with active or current epilepsy, and about half a million are children, and about a million are older adults over the age of 55. We know that new cases of seizures and epilepsy are more common in young children and older people because risk factors are more common in these age groups. For example, complications before or during childbirth in the young and stroke in the old. Epilepsy affects people of all races and ethnicities, and some studies have shown slightly higher rates of epilepsy among Hispanics than non-Hispanics, blacks versus whites, and males versus females. Let's talk a little bit about how a diagnosis of epilepsy is made, so there is no single test which is used to diagnose epilepsy. And critical information to help diagnose epilepsy is the medical history of the individual and a description of the events that are concerning for seizures that took place. It's common for an evaluation for epilepsy to include complete medical and neurologic exams, blood testing, brain imaging, which typically includes an MRI scan, and an EEG to record baseline electrical activity in the brain. Sometimes it's necessary to obtain more extended EEG testing which may or may not include video monitoring, and this is done as well to record events concerning for seizures for clinical review and correlation with the EEG. And this type of study can be done either as an outpatient or an inpatient at centers that specialize in epilepsy care. Seizures, we know, are the main symptom of epilepsy. And for most people, including health professionals, when they hear the word seizure, it first conjures up an image of a person who is unaware, potentially on the ground, convulsing. But seizures can present many different ways. A seizure can manifest as a staring spell. It can affect one part of the body with a less obvious movement, like a muscle twitch or a change in muscle tone similar to a spasm. And a seizure can present as someone being confused or having difficulty moving or speaking or wandering. And there are some seizures that have very few outward signs. Seizure symptoms and signs of seizures will vary from person to person. However, in most cases, for any one individual, the symptoms and signs of their seizures tend to be stereotyped and can be described as usually consistent and predictable. I'd like to share with you just a bit around seizure triggers, and you can see a list of potential triggers presented here. Seizure triggers reflect behaviors and situations that make it more likely for someone to experience a seizure. Over time, some people with epilepsy or their families can become aware of certain activities that seem to trigger their seizures. And avoiding these activities or situations can help to reduce the frequency of seizures. It's important to note that the most common reason that seizures recur is missed medication. It's estimated that about half of people taking medication for epilepsy don't follow their medical instructions properly. Medication adherence is a problem that truly transverses chronic disease, including epilepsy, and targeted efforts to improve barriers to medication adherence should be a standard part of comprehensive care provided to people with epilepsy. Let's spend a little time reviewing the different type of seizures, and we'll break this down very simply into three main types of seizures. One key to defining the type of seizures a person has is where the seizure begins, and this is sometimes referred to as the area of seizure onset or the seizure focus. And this is highlighted in this graphic on the right. So, focal onset seizures begin in and involve only one hemisphere of the brain or less, while generalized seizures have their onset in both hemispheres of the brain. And we think that seizures that involve both hemispheres of the brain likely occur from deep pacemaker cell areas of the brain that disrupt normal activity all at once, or that there are networks of the brain that synchronize rapidly, making it not possible to determine exactly where a seizure has begun. Now, when it's not possible to determine where a seizure begins, these seizures are classified as unknown, and often with time and more extensive testing, unknown seizures can eventually be better defined as having either a focal or a generalized onset. Another key factor in classifying the type of seizure someone has, particularly for focal seizures, is whether or not a person's level of awareness is affected during the seizure. For generalized seizures, where both hemispheres of the brain are involved, one might expect that a person's awareness would be impacted. Other key information that is considered when classifying seizures is whether or not the seizure involves other symptoms, such as face or body movement. These motor symptoms can often help to further classify the type of seizure that someone is having. Now, shown here in this diagram is a schematic of the classification developed and published by the International League Against Epilepsy. And you can see how the information we discussed on the prior slide fits into this classification scheme presented here, which highlights that seizures are classified by their onset, so a reminder where they start, that they're focal or generalized, how they impact a person's awareness, and whether or not someone has motor symptoms that accompany the seizure. If we take a look at the first column, focal seizures, they can present with or without a person's awareness being affected, and they can also have motor symptoms that accompany them or not. I want to point out here that any seizure that starts in one area of the brain, so focally, can spread to involve both hemispheres. And this is referred to as focal to bilateral chronic seizure, which people sometimes use older terms like grand mal or convulsion to describe. Now under the second column are generalized onset seizures, which we know present with impaired awareness because the entire brain is impacted, and this type can have a variety of motor symptoms. There are also generalized seizures called absence seizures, which are classified as non-motor, and an older term that sometimes gets used or that you might hear to describe these is petty mal seizures. So why is classifying a seizure so important? Classifying a seizure is important because it helps to determine the best evaluation for a person to have and the most appropriate treatment options and seizure-first aid response. It's important to understand that there are many different risks and causes when it comes to epilepsy, and for many people diagnosed with epilepsy, the underlying cause may be unknown. When a cause can be identified, some of the common causes are listed here and include traumatic brain injury, which can lead to post-traumatic epilepsy, ischemic or hemorrhagic stroke, CNS tumors, as depicted on the MRI image on the right, infection, or genetic factors. Advances in brain imaging and genomic sequencing over the past two decades are leading to more people having a better understanding of their epilepsy and also enhancing the possibilities for targeted therapies. In considering treatment, along with typical first-line therapy, which is anti-seizure medications, other treatment options for epilepsy exist and include epilepsy surgery. There are many different types of epilepsy surgery and surgery techniques that range from open procedures, then to remove an area of brain tissue responsible for seizures, to using a less invasive laser therapy to target abnormal brain tissue responsible for seizures exist. Surgery can be an effective alternative to seizure medications for some people, and it's important that people who have seizures that don't fully respond to medication who might benefit from surgery are referred to an epilepsy center for evaluation. Neuromodulation with implanted stimulation devices is frequently used in patients who have not responded to medications, and these devices have the ability to stimulate a nerve outside the brain, the vagus nerve in the neck, or to directly stimulate brain tissue in a case of responsive neurostimulation or deep brain stimulation. And in all cases, these therapies aim to decrease the frequency of seizures or reduce the effects of seizures. Medically prescribed and monitored diets are another option and can be used in infants, children, and adults. And a note about these, they should not be used or tried unless they're recommended and monitored by a neurologist, and they involve working closely with a specialized team that usually includes a nurse and a dietician. Investigational medications and clinical trials can also be considered if other modalities of treatment have not been successful. And managing seizure triggers, I want to mention, is also an important aid in reducing seizure frequency. Antiseizure medication we know will be successful in controlling seizures for about two out of three people with epilepsy. Therefore, two important self-management domains for people with epilepsy are both treatment and medication adherence, so taking antiseizure medicines regularly and reliably as they've been prescribed. It's not uncommon for some people to have to take several different antiseizure drugs at different times throughout the day, and this can be difficult to manage. And often, the side effects from the polypharmacy can be disabling, sometimes even more so than the seizures themselves. It's important to share with you briefly around medication-resistant epilepsy and how we define this. Medication-resistant epilepsy occurs when a person has failed to become seizure-free with adequate trials of two antiseizure medications. This means an appropriate drug was chosen for the person's seizure type and that the medicine, when tried, has been tolerated by the person at adequate treatment doses. These medicines can have been tried alone or together with other seizure medicines. The high risks of uncontrolled epilepsy and current practice referral patterns we've discussed so far are why this is important to emphasize. If an individual's epilepsy is drug-resistant, it's essential for them to be seen by an epileptologist at a comprehensive epilepsy center for further evaluation and treatment to limit their risk for both morbidity and mortality. Now, epilepsy centers are accredited by the National Association of Epilepsy Centers, and they provide a comprehensive epilepsy patient-oriented team that can assist with the diagnosis and treatment of epilepsy. As I shared earlier, substantial disparities exist in neurologic specialty care, and many factors can contribute to an individual receiving high-quality care. We want referral to specialized care to be timely, and so it's important to think about this. It's known that people with epilepsy are greater than five times more likely than the general population to lack transportation to healthcare services. So if you have a patient who you feel requires specialist-level care, know that many epilepsy centers offer telehealth consultation, and the accessibility to telehealth consultation has expanded significantly during this era of COVID. Additionally, reaching out to community epilepsy-serving organizations can also bring aid in the form of resources that support or provide assistance with transportation to an epilepsy center, as well as providing support to your patients throughout their evaluation process. We'll transition now to discuss common comorbidities in epilepsy, focusing in on mental health and cognitive dysfunction. Cognitive impairment, depression, and anxiety are common in people with epilepsy, irrespective of age, gender, or socioeconomic status. These comorbid conditions are often more disabling than seizures. Superimposed on managing the comorbidities are hazards of widespread stigma and social isolation, and the lack of general public understanding around the abilities of people affected by epilepsy, as well as a fear of seizures. An important point not to lose sight of in caring for individuals impacted by epilepsy is depicted here on this image of an iceberg. That is, for many people, seizures, which are recognizable as a visible symptom, really represents only the tip of the iceberg of what they're dealing with, with comorbidities and psychosocial challenges often presenting metaphorically below the surface. Let's take a closer look at the comorbidity of mental health. Mental illness is disproportionately common in people with epilepsy. A recent systematic literature review demonstrated a relatively high prevalence of mental health comorbidities in people with epilepsy. Mood and anxiety disorders are the most common comorbidities, as you can see displayed here, with prevalence rates of 35% and near 26%, respectively, while psychotic spectrum conditions such as schizophrenia and bipolar disorder are less prevalent. It's important to note that the prevalence of comorbidity that a patient experiences may vary with the type of epilepsy they have and the person's responsiveness to treatment. Recent publications have raised concerns of the under-recognition and under-treatment of psychopathology in people living with epilepsy. As primary care providers, the process of screening and identifying in your patients with epilepsy, the presence of comorbid depression or anxiety is of tremendous importance in getting them to the treatment and support that they need. Shown here are the results of a population-based study done in Canada that shares the lifetime prevalence of mental health disorders in people with epilepsy compared to people without. Now, as a population-based study, this is representative of what happens to everyone in the community and is not just reflective of people cared for at an epilepsy center. And what you can see is that when they looked at the prevalence of any mental health disorder in the past 12 months, what they found was that in people who live with epilepsy, this is more than twice as common than in people without epilepsy. They also looked at the prevalence of suicidal ideation and found that lifetime prevalence for suicidal ideation was nearly twice as high for people with epilepsy as compared to individuals with no history of epilepsy. What about children? How common are these comorbidities in children with epilepsy? This slide reflects findings from a large study, a patient registry done in Norway, looking at over a million children. They followed the children over a 17-year period, and they compared comorbidities in kids with epilepsy, both complicated epilepsy and uncomplicated epilepsy, with children in the general population. They defined complicated epilepsies as epilepsy with additional neurologic or developmental disorders. And what they found when they looked at this list of comorbidities was that the children with both complicated and uncomplicated epilepsy had a higher risk for comorbidities than kids without epilepsy, and that their findings were particularly marked for children with complicated epilepsy. In essence, detecting comorbidities early is critical, and all children with epilepsy are at risk. Requests for screening and referral to a psychiatrist, a psychologist, a social worker, or a counselor should be initiated early if there are any concerns whatsoever. Depression and anxiety in children are treatable, and early detection and treatment can enhance neurocognitive outcomes and certainly improve quality of life. Another common comorbidity impacting more than half of people with epilepsy is difficulty with cognition. It's important to keep in mind that just as epilepsy syndromes are diverse and clinical outcomes in epilepsy are diverse, cognitive profiles in epilepsy are also diverse. Both children and adults with epilepsy frequently report memory or thinking difficulties. Subjective memory complaints are increased with people in epilepsy compared to the general population and can be complicated by a wide variety of factors. Highlighting the need for support around cognitive challenges, studies have shown cognitive function is a significant predictor of self-evaluation of the quality of life among adults with epilepsy. As you might expect, there are, of course, a number of causes and variables impacting cognition, which come into play. You can see displayed here the spectrum of considerations. If you take a look across, these range from largely irreversible factors or variables, things like structural factors, to modifiable lifestyle factors. You can see there's a great range and a great need to take these into consideration when considering a patient's cognitive challenges. In epilepsy seizure medication, the first line of treatment in epilepsy is considered a largely reversible or functional factor when it comes to comorbid cognitive challenges. It's important to note that there are medications which generally are regarded as more or less favorable on this front, with a trend towards newer therapies being relatively favorable from a cognitive side effect standpoint. It's important also to note that anti-seizure medicines can have positive as well as negative effects on cognition. Seizures and interictal activity can impact cognition, and lessening that abnormal electrical activity in the brain with the best-suited medical therapy will often bring improvements on a cognitive front. A further consideration is evaluation of cognitive symptoms. Neuropsychological testing early in the course of a diagnosis of epilepsy should be discussed with patients, as this type of evaluation can provide a longitudinal assessment of cognitive symptoms related to epilepsy and its treatment. Having that early baseline assessment can be very helpful in managing symptoms and treatment, and also for providing patients with the appropriate supports throughout the course of their disease. All right, this is a great segue into us taking a closer look at the support you can share with your patients via evidence-based epilepsy self-management programming. We know that an effective approach to improve population health requires a strong focus on self-management. The CDC's National Center for Chronic Disease Prevention and Health Promotion includes among its four priority efforts to help ensure that community support and clinics refer patients to programs that improve management of chronic conditions. Self-management support truly is a grouping of policies, programs, services, and structures that extend across healthcare, social sectors, and communities to support and improve the way individuals manage their chronic conditions. In epilepsy, self-management reflects the processes used to control seizures and to manage the effects of epilepsy, and also covers medication and treatment, as well as seizure and lifestyle management. Current approaches have been derived from other models of chronic disease management, and it's essential to appreciate in epilepsy self-management that there's a partnership that exists between the person with epilepsy, their provider, and their family or other support persons. It's also good to note that this adjunct care support does not replace clinical guidance. Strategies that are used in epilepsy self-management are grounded in proven behavioral science approaches. In 2012, the Institute of Medicine report on the public health dimensions of epilepsy highlighted important knowledge gaps and emphasized the need for evidence-based, scalable epilepsy self-management programs. And the CDC translated recommendations on self-management research and dissemination into an applied research program, which began in 2007 through the Prevention Research Center's Managing Epilepsy Well Network, often referred to as the MU Network. And MU Network objectives are to advance epilepsy self-management research by developing effective interventions that can be broadly disseminated for use in people's homes, in healthcare provider offices, or in community settings. The Managing Epilepsy Well Network is a multi-site initiative, which is funded by the CDC. It's comprised of the CDC's Epilepsy Leadership Team coordinating academic centers, clinician scientists at collaborating academic centers that engage in the development, the evaluation, the implementation, and dissemination of self-management programs and tools. Epilepsy partner organizations are also critical in this network, as well as people who live with epilepsy, their caregivers, and their epilepsy providers. The work of the Managing Epilepsy Well Network has demonstrated that, irrespective of program delivery mode, results from 15 randomized controlled trials. So, a good amount of evidence has demonstrated improvements for patients who engage in epilepsy self-management. And these improvements have been measured by looking at quality of life, knowledge, self-management, self-efficacy, so the sense that someone has a control of their situation, mood, and also an improvement in seizure control. Displayed here are current new programs available for sharing with epilepsy patients. These programs are each unique in the domains that they cover when it comes to self-management and comorbidities. But there's a common thread of improving quality of life and health outcomes for people with epilepsy. Let's take a closer look at some of these programs. So, we'll start with HODSOCH, which stands for Home-Based Self-Management and Cognitive Training Changes Lives. And this program's focus area is cognitive dysfunction, and it aims to address memory and attention problems in adults with epilepsy to improve health outcomes and quality of life. And you can see the different program components which help to comprise this intervention. Now, this program is facilitated by one-on-one counseling from a certified HODSOCH memory coach. It's delivered over eight weeks, and it can be done online and through telephone delivery. Research findings for this program have shown improved quality of life and objective cognition as well. Project UPLIFT is another program, and this one has a focus area of mental health. And the goal is to empower people with epilepsy to improve their mental health through mindfulness and cognitive behavioral skills. You can see the elements that make up each session for this program listed on the right. The program is facilitated by someone who's trained in UPLIFT. It can be also co-facilitated by a person who's living with epilepsy and often is. And it's supervised by an UPLIFT-trained mental health professional. Now, the format for this program is a group format. It's delivered over the phone, and sessions are delivered once a week for eight weeks. And research findings for UPLIFT have shown increased knowledge and skills for people who participated, decreased symptoms of depression, prevention of major depressive disorder, and an improvement in satisfaction with life. I want to note that this program is also currently available in Spanish. Some of the other programs are in the process of adapting to include the availability of their programs in Spanish. And so, hopefully, those will become available soon as well. I'm going to move on to a third program called P.A.C.E.S., which stands for the Program of Active Consumer Engagement in Epilepsy. And the focus area of this program is coping and goal-setting strategies that improve overall and discrete aspects of quality of life, self-management and efficacy, anxiety, and depression. It really is looking to increase medical, psychosocial, and community adjustment of adults with active seizure conditions. This, again, is a group format program, which can be done by telehealth or in person. It's facilitated by a mental health professional and a peer facilitator with epilepsy. Research findings for P.A.C.E.S. demonstrated improved quality of life, mood, epilepsy self-efficacy, and epilepsy self-management behaviors. I'm going to move on to one more program, which is called SMART, Self-Management for People with Epilepsy and a History of Negative Health Events. Again, on the right, you can see that it is an eight-session program. And what's involved in all of those sessions that participants pass through. The focus area for SMART is to improve self-management and mood in order to reduce negative health events. So, things like seizures, hospitalizations, or emergency department visits, or self-harm attempts. This program is facilitated by a trained nurse as well as a peer educator. There are eight group sessions, and it's also available by telehealth. Once the eight sessions are completed, this program is unique in that it offers monthly phone follow-up with the nurse over a three-month period. Research findings associated with SMART include reduced health complications, improved mood, quality of life, and health functioning in high-risk people with epilepsy. I just want to emphasize, it's a lot to take in, I know, but that all of the programs presented are telehealth accessible and adaptable. This is so important when we look at tackling disparities and bringing epilepsy care to all people living with epilepsy, irrespective of where they live, how far they are from an epilepsy center, or any unique circumstances that they have related to their condition. We want to encourage you and share with you to connect people to epilepsy self-management programs. Program delivery varies, as you can see. Some of it is one-on-one delivery. Some of it is group delivery. There are different individuals who have trained, who are available at clinical centers or in the community that deliver these programs. Centralized program hubs, so the centers where these programs were developed, and the investigators who oversee their development, dissemination, and implementation can certainly help you to connect your patients to these programs. The MU Network, which I shared with you, which includes, of course, community-serving organizations, is also a source for program delivery. There are many clinical healthcare partners who are implementing these programs through epilepsy centers and their private practices. You'll see at the bottom of the slide and the next one, the managingepilepsywell.org website, which is a great spot to refer your patients to if they are interested in learning more about programs. You can also help them register for a program right on this site. It's also possible for you to become a MU program partner to train and adopt these programs. The programs were designed to be adopted by healthcare and community organizations to serve the needs of local epilepsy communities. There's virtual training that's available with certification as well that's done through the academic centers where programs were developed and tested. And each of the programs truly relies on these important partnerships to increase access to epilepsy self-management for people with epilepsy. And with that, I'm going to thank you for your attention and turn things back over to Dr. Ficker. Thank you so much for that comprehensive presentation. We do have some questions that came through in the chat. We'll start with a couple of questions that came up about the Managing Epilepsy Well programs. And they're somewhat related. The first question is, is there a minimum age for the MU programs? And are there programs like this for parents of children with epilepsy? Right. So currently, all of the MU programs, which undergo rigorous trials for efficacy, have been tested in adults living with epilepsy. So the short answer is, at this time, these programs are available for adults. However, two programs are currently in adaptation to be able to offer self-management to children and youth with epilepsy. The target age range will be adolescents, so roughly 13 to 17. And there will be a mechanism for parents to participate with their children in these programs. Each of them will have their unique guidelines for how that's done. But developers recognize the importance of having parental involvement, potentially, when disseminating and implementing this type of program. Related to that, one question was, the MU programs seem to be geared towards those that may be higher-functioning adults with epilepsy. Are family members or caregivers allowed or able to participate in the MU programs, along with their family member that might have epilepsy? Dr. Anneke Vandenbroek Sure. And so one of the things that I mentioned when I sort of ran through quickly the fact that these programs are telehealth accessible and adaptable is that they are adaptable. So if someone wanted to participate in the program, there are many ways that we can work with people to do that. So if they had a loved one who wanted to sit in with them as they participated, that's possible. Of course, this is outside sort of the strict confines of a research trial, but in the general delivery of these programs, certainly we're able to adapt to try our best to meet the needs of people who may benefit from having, you know, a partner or caregiver sit in with them during the sessions. Dr. John Barratt Okay. Thank you. Just a reminder for the attendees, if you have any questions, please type them in the Q&A box, and we will answer those as they come in. We do have a question from an attendee who lives in Brazil who practices in Brazil and commenting about it's a poor income country. Some of the investigations, tools, techniques like imaging, laboratory studies are rather expensive. And are there comments that you have about potentially enhancing the investigations or a way for patients who live in, you know, either lower socioeconomic status or poor countries where any tips or resources for that, for that, for those individuals? Dr. Anneke Vandenbroek So something specific to Brazil, I can't offer. Although what I will say is that many of the epilepsy serving organizations work with people in other countries to try to assist with helping them to connect to additional resources either locally or at a distance. And that might be a good first start, connecting with, say, the Epilepsy Association may be a good start. Connecting to professional organizations through available in the U.S., for example, the American Epilepsy Society to see what's available to support clinicians from outside and what would potentially, you know, be available to their patients. The International League Against Epilepsy has a bureau as well, which is very patient-oriented and specific. And so that's another good place to look for assistance. And Dr. Ficker, I don't know if you have other information to add to that. You may know of more. Dr. Robert Ficker No, I think that answer is very appropriate. Thank you. We did have a question come up about dietary therapy for epilepsy. And why should it be prescribed or supervised rather than the patient just going out and trying it on their own, you know, going to the Internet and getting, you know, instructions for a ketogenic diet? Why is it important for that to be supervised by a professional? Dr. Jennifer Ficker Sure. And so, you know, there is a lot of information about keto diets that live on google.com, and so people could certainly look that up in general. The general public can look that up. When it comes to epilepsy, the medical diets that are used are prescribed. So they're medical therapies, and often they're used in combination with medications. And so what's important is because the diets are prescribed, there's a great deal of specificity that goes into the way dietary therapies are applied that require things like frequent follow-up and labs and considerations for very specific dosing of these dietary therapies that can only come at the expertise of a team that includes a neurologist and a dietician and typically a nurse as well. And so just like any other medical therapy which is prescribed, you want to have the expertise behind that therapy or that prescription, and you want it for it to be monitored closely to see whether or not there is benefit, to see whether or not there's any need to adjust any concomitant additional therapies that are going on at the same time. And so when these diets are being prescribed for epilepsy, remember that it's a treatment. It's a therapy. This is not, you know, a google.com sort of thing where you can go and look up, you know, I'm going to go on a keto diet. This is not what we're talking about. This lives under the umbrella of medical therapies for epilepsy. A related question to that somewhat would be, what about a patient that wants to try medical marijuana through a, you know, state-approved dispensary? Any comments or thoughts about that? Sure, and so that, you know, question comes up a lot, and, you know, here's what I can share around that, that having a discussion with your epileptologist or your neurologist if you're planning to start a new lifestyle behavior, right? So if it's not prescribed, it's sort of something that you're going to try, and sort of something that you're going to try on your own. Having a discussion with them about how that might impact your treatment or your seizure control, what other concerns they may have around the side effects from that is always important. There are options, medical treatment options for epilepsy around the use of substances like that, and so it's important, you know, to understand that really anything you do outside of what's prescribed as a treatment for your epilepsy needs to be discussed, whether that's medical marijuana, whether that's an herbal medication that you choose to pick up, you know, irrespective of what it is that you'd like to try, and in some instances, after having that discussion with your provider, they may say, no harm, give it a try, but they might not, and so what I would recommend to anyone is before branching out and adding something to sort of your regimen for treatment, take the time to have that discussion and to really weigh the pros and cons of doing so with someone who really should be, you know, an expert on the care of your epilepsy. Perfect. Thank you. You had talked a little bit about the mental health comorbidities in patients with epilepsy. You know, referral to a mental health provider is often challenging, and so, you know, we get, as seizure specialists, we get questions about, you know, from a primary care provider or even a neurologist or even patients themselves, are, you know, therapies like SSRIs, if the neurologist or primary care provider wants to prescribe that to start treatment for either anxiety or depression, are they safe to use in people with epilepsy? They are. It's absolutely safe to treat mental health comorbidities in epilepsy. There's no, you know, evidence to show otherwise. Always good for a primary care provider or behavioral health care provider to communicate back and forth with the neurologist. That open communication can be very helpful. To think about other medications the patient's on or maybe where to start with treatment for depression or anxiety. You know, it may be that someone, you know, is already on, let's say, in the example of a person who lives with epilepsy, may already be, say, on a benzodiazepine to help control seizures. So, it's important for, you know, the psychiatric or behavioral health care provider to understand that that already exists as part of their regimen. And so, when they're thinking about different treatment options for that person, there may be other considerations around choice and dosing. And so, what I would say is, yes, you know, mental health comorbidities in epilepsy are definitely treatable. Medication can help. We know this to be true. And communicating with the neurology or epileptologist around the patient's current drug regimens and treatment is always good to do. Okay. Thank you. And with that, we're nearing the end of our presentation. I want to thank Dr. Kiriakopoulos and the American Epilepsy Society for organizing this presentation. I thought those were very useful tips and information for treatment with epilepsy. So, thanks, everyone.

equitable care

epilepsy

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Managing Epilepsy Well Network

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