Living with Epilepsy-Self-Management and the Self: Partnering with the Community to Improve Outcomes for People with Epilepsy

Video Transcription

So I'm Martha Sujatovic. I'm going to be talking about self-management in the self and partnering with the community to improve outcomes for people with epilepsy.  Here's my disclosures you have in your information available to you. Our objectives today is we will identify common behavioral difficulties in people with epilepsy  and talk a little bit about some freely available community resources, including the Managing Epilepsy Well, or MU, network. And then a little bit about forming partnerships  with the community stakeholders that are epilepsy-focused, some outreach methods and approaches that may help engage hard-to-reach populations, including  people that work in or people that live in rural communities. So I'm going to start with talking a little bit about stress and mental health. And Janelle Wagner talked quite a bit  about that broad scope in children and youth. If we think about the similar issues in adults, mental health comorbidity is very common in people with epilepsy.  Epilepsy in itself causes stress, particularly the unpredictability of when a seizure might occur. And folks with epilepsy have anywhere in the order of two to five times  an increased risk of developing any psychiatric disorders. One in three patients with epilepsy have a lifetime psychiatric diagnosis. And we know from abundant research  that having a psychiatric comorbidity is a poor prognostic marker for a variety of things, including worse response to biological treatments, including drugs and epilepsy surgery,  as well as increased morbidity and mortality in people with epilepsy. So you've heard quite a bit about different kinds of approaches for screening people,  identifying those who are most vulnerable, looking at some of the outcome markers, and have heard a little bit about some of the approaches that might be helpful.  And I want to pivot a little bit and talk about epilepsy self-management in particular. So I'm going to use the acronym ESM. ESM is described as the processes  that are used to control seizures and manage the effects of epilepsy, but also to improve life as a whole. And you've heard from our first talks  about people with epilepsies and those who love them are concerned about more than just seizures. And we really need to take that kind of whole person approach.  The current evidence-based approaches are mostly derived from models of chronic illness self-management. So they're not just kind of pulled out of thin air.  And there is a fairly robust body of research that suggests that ESM does have biological effects. You can look at the effects on blood-based stress  hormones, inflammatory biomarkers, and heart rate variability can all be impacted specifically by evidence-based ESM. If we think about ESM and the barriers,  so what is it that stands in the way of a person with epilepsy ideally or optimally managing their health? There are a whole bunch of them.  Forgetting to take anti-seizure medications is a big one. Sometimes the medications, even if they're taken consistently and on time, may have suboptimal treatment effects.  We heard a fair bit about medication side effects. So we push medication adherence. But then if the person does that, then they're having sometimes more side effects.  Depression, as you heard from Dr. Wagner and other mental health symptoms, are really common. Stigma has gone a little bit underground here in the US compared to some settings.  I think in particular, I do work in sub-Saharan Africa.  There's different levels of stigma with epilepsy. In that setting, as here, but I would say it's still there. It's still very corrosive. It's still very persistent.  Lack of social support. So you heard from Scott Badzik about the social isolation that happens. And that can also have a really persistent negative effect.  And then lack of access to care and medication. I've had the really good fortune now to work with Dr. Gina Gearing at the University of Iowa.  And we've been doing a fair bit of rural outreach. And I am just working in a more urban setting. I'm just really struck by how far people have to go  and how difficult it can be to get to see an epileptologist and get access to care that we know is evidence-based and needed. So you heard a little bit from Dr. Jobst  about the Managing Epilepsy Well Network.  It is an initiative that I've been part of now about eight years. And the program itself has been going on for over a decade. It is in being a self-management person  in a variety of chronic health conditions, I would say it is one of the best well-organized and consistent and maintained self-management research  and implementation communities that I've ever seen. And you have our little world map here. The mission is to advance, or US map,  to advance the science related to epilepsy self-management by facilitating and implementing research, conducting research in collaboration with network and community stakeholders.  And that's really important. And then broadly disseminating or scaling up the findings to make them available to as many people with epilepsy in their families as we can.  If you have questions or think that you would like to tap into some of the resources in the Managing Epilepsy Well Network, here's the website for you.  There, you can hear and read about all the different programs that are available. We have content for patients, for program adopters, and for clinicians and researchers as well.  So I'm going to give you a quick kind of word So I'm going to give you a quick kind of whirlwind tour of some of the MU Network programs.  Two that our group at Case Western in Cleveland have developed are the TIME program, which was focused on people with epilepsy who also have comorbid significant mental illnesses  like schizophrenia, bipolar disorder, recurrent major depression. That was an in-person program. We have kind of migrated more to using another program  that I'm going to talk about in a minute here, the SMART program. And that was, so SMART stands for Self-Management for People with Epilepsy and Recent Negative Health Events.  And I'll talk about the definition. But that is a group session developed by or co-delivered by a nurse and then a person with epilepsy who is trained to deliver the program.  Webbies is another fully online program. Uplift you heard a little bit from Dr. Jobst. Hobscotch, specifically focusing on cognitive difficulties.  The PEARLS program is a collaborative care model. And then PACES is Active Consumer Engagement and Self-Management in Epilepsy. So all of these programs are available.  I don't have the time to go into the details. But the focus of the Mew Network is to develop and test these programs and then scale them up.  And this is the CDC Epilepsy Program Self-Management Network here. So you can see kind of the flow that the research has. And so developing it.  A hallmark of the Mew Network is that it takes a community-based participatory approach. So it's not just a physician or a scientist sitting in his or her office saying,  this is what I think you need, but really convening groups of stakeholders, people with epilepsy, their families. What should these programs be? What should they look like?  How should they be rolled out? And then they're tested, often iteratively. So you heard Dr. Jobst talking about Hobscotch 1 and Hobscotch 2.  And we are certainly doing that with SMART. And then, how do we sustain that system and how do we make it happen? A final hurdle here that we are still dealing with,  it always comes down to the money, doesn't it? Is how do we make these programs widely available? So my personal goal is, how many of you  have ever treated or worked with patients with diabetes? Getting folks in your practices, I see some hands going up, right?  So if you're diagnosed with diabetes in a clinical setting, you almost always get referred automatically to a certified diabetes educator. And you get a diabetes education program  that's curriculum-driven. Insurance pays for it. Medicare pays for it. We don't have that with epilepsy. And that's where I think we need to be,  is we need to have evidence-based epilepsy self-management programs that are covered by major insurance and are available to everybody who has epilepsy.  So that's my personal soapbox. And I apologize for going off on that. But I think the data is just really driving us there.  If we look at the ESMs that are available across the MU Network, they touch on a variety of patient populations, including adults, young people, those  who have significant comorbidities. The intensity of the program really varies from a few hours to multiple hours. They're often delivered in hour-long sessions,  sometimes in person, sometimes in half-day workshops. The modes of delivery vary. So some are group level. Some are one-to-one. Personnel also are varied.  So we use nurses and SMART. You heard about the mental health professional approach. And I have always been a big believer in empowering patients. And we use trained peer educators.  And those are folks with epilepsy who are familiar and comfortable with delivering our programs, a variety of outcomes. I won't go into those a lot, because you've  heard quite a bit about outcomes. But I think it's really critical when we do ESM research to make sure that we are looking at outcomes that are important, not just to clinicians,  but also to patients with epilepsy. And I would add payers as well.  So if we look at the totality of the ESMs that have been developed by the MU network, results from at least 15 randomized controlled trials  suggest that there's a variety of improvements in multiple health domains, including quality of life, epilepsy knowledge, self-management competency,  self-efficacy as it relates to epilepsy specifically, mood, and seizure frequency.  And an effort that I've been leading at CASE now for about eight years is a integrated database, so the MU database. And that really is a testament to the research  collaborative community that we have in the MU network. So we have been able to partner with every site that's been involved, where the sites take their clinical trials  data in a de-identified fashion, and going through the appropriate regulatory processes, have allowed us to pool that data. So we have an integrated database  with information on over 1,700 unique people with epilepsy, over 19 studies. And we've actually published a variety of papers on this aggregate data.  So we can tell you a little bit about what happens when you start these epilepsy self-management programs, what kind of outcomes might you expect. And just as a brief snippet, this  was an analysis that we published on looking at depression severity. So we took five pooled MU network studies, almost 500 patients with that primary outcome of the PHQ-9.  So you heard from Aicham that the PHQ-9 is a key outcome that's important to patients. And we were able to demonstrate that compared  to control, a wait list usually, our intervention, our aggregate data on evidence-based ESMs showed a clinically and statistically significant improvement in PHQ-9 score.  So just drilling a little bit into the SMART program, SMART is a eight-session done in a group format, web-based format. So when we first started doing it,  we had a single in-person session. And then we had seven follow-up group sessions. But even before COVID, we very quickly saw that trying to get people who have transportation  limitations into that group could be really rate limiting. And so now it's fully online. When we first started doing this, we were using Skype or Dr. Yopes talked about Webex.  Webex was a huge disaster, by the way. Now we're using Zoom. And one of the few silver linings in the COVID pandemic is people are kind of used to Zoom,  and they're used to telehealth and telemedicine. And so it's really very highly acceptable. We do have telephone call-in availability for those who have limited web access.  Group sessions are completed over about eight weeks. We have a very detailed curriculum, and it's semi-scripted. So we believe it's good fidelity to the program.  The groups are led by the nurse and the peer educator. So Scott Badsik, who you saw his lovely video at the beginning of the session, is one of our peer educators.  And he's absolutely stellar, by the way. This is our curriculum. We cover a fairly broad waterfront, orienting people to this group session,  talk about stress, stigma, problem-solving skills, nutrition, exercise, social supports, and normalizing your life in spite of having a chronic but unpredictable condition.  So we cover a fairly large expanse of topics, but it's organized in a very specific way with a specific amount of time that you spend on each session,  with handouts and additional toolkit materials that are appropriate for most people with epilepsy.  I have to say, one of the secret sauce things about SMART is that it is a group format, and we hear time and time and time again from the folks in our group  that they have never actually been in a group setting with other people with epilepsy, where it's not just support, but really kind of self-management and learning together.  And that seems to be profoundly valuable to many people.  This is some data from our first efficacy trial with SMART. So our primary outcome was negative health events. That was defined as having a seizure,  a hospitalization, emergency room visit, or self-harm attempt. And we deliberately focused on those as being something that would be of interest  to both payers as well as clinicians, as families. I think everybody would agree that those four categories of NHE is not something that anybody wants.  We were able to demonstrate over a 24-week period that we had improvement, a reduction in total NHE count, and change in total NHEs.  But then we also saw improvement in other important outcomes, including the PHQ-9, the Montgomery Asper Depression Rating Scale, and quality of life.  Peer educators are important. They have personal experience. They've kind of walked the walk. They're not perfect models of health, but they are our secret sauce.  We've gotten funding from community agencies. So the Cuyahoga County Alcohol, Drug, Addiction, and Mental Health Services Board has taken to using  and supported us to use SMART within their network. And recently, we've gone national. So we have a new five-year project supported by the CDC.  Our primary partners are the Epilepsy Association in Cleveland, kind of Northeast Ohio region, Epilepsy Association of Western and Central Pennsylvania,  and the Epilepsy Alliance in Ohio. So we're covering a multi-state region. And what we're doing is training these organizations to provide SMART.  We train the peer educators and the nurse educators. We are prioritizing rural outreach, and including families and other individuals. And I want to say just a couple of words  about reaching out to a rural community. So I'm in Ohio, and when I talk to people from the East Coast, they sort of think that everybody's in a cornfield in Ohio.  But it's all relative. So we use something called the Rural Urban Continuum Code. So these are developed by the U.S. Department of Agriculture.  And so here's my colleague in Iowa, Dr. Gearing. And so the redder it is, the more rural it is. And here's Iowa and Ohio. But if you do this kind of coding across the United States,  you can really identify where you need to try to make these epilepsy self-management programs, because those are the folks that  have the greatest difficulties in accessing epilepsy care. We've learned some things along the way on how to engage stakeholders involving the community,  primary care doctors, rural providers, going to community centers like churches and public libraries. One of the things we've found with epilepsy self-management  generally across the whole MU network is that we almost always get more women coming to our programs than men. So we're trying to target some of the locations  where men might congregate. So the VFWs. In Iowa, the Lions Club is really big. Barber shops. We want to try to reach folks that aren't typically  self-referring for epilepsy self-management. And of course, partnership with epilepsy-focused social service organizations.  So just kind of thinking about that impact on clinical care and practice, this body of literature that we have on ESM suggests that evidence-based ESM  can reduce stress, depression, epilepsy complications. It improves quality of life. And partnering with community stakeholders can facilitate some of these practical models of care.  Finding ways to necessarily incorporate ESM into clinical workflow is good, but I don't think that's the only approach. An alternative is to make these programs  available in the community as an adjunct to whatever medical or health care treatments people are getting. And the overall bottom line is that investing in the self  has very high return on investment. So this is something that's fairly low cost, fairly low burden, but can yield big gains.  And I just want to follow with a thank you for inviting me and letting me talk about SMART, one of my favorite topics. And I'd just like to say a comment from one  of our SMART participants who said, I learned a couple ways to help that I hadn't even considered or known about. And since implementing them into my life,  the number of bad seizures days I've had has gone down, which is really important to me. So that kind of is our reward at the end of the day. And I hope you will find this helpful  and might spend some time checking out the MU Network and the various programs that are available. Thank you.

Video Summary

Martha Sujatovic discusses self-management in epilepsy, focusing on improving outcomes through community collaboration. She highlights common behavioral issues among epilepsy patients and introduces the Managing Epilepsy Well (MU) Network, which develops evidence-based self-management programs. Key challenges include medication non-adherence, mental health issues, and limited access to care, particularly in rural areas. Sujatovic outlines various programs like SMART, TIME, and Webbies, emphasizing the importance of engaging community stakeholders and using participatory approaches. The MU Network aims to make self-management resources widely available, akin to diabetes education. Sujatovic stresses the importance of empowering patients through peer-led initiatives and extending care to rural communities. Overall, investing in self-management shows promise in reducing epilepsy complications and enhancing quality of life while making care accessible and affordable.

Asset Subtitle

Presenter:

Martha Sajatovic, MD, is Professor of Psychiatry and of Neurology at Case Western Reserve University School of Medicine in Cleveland, Ohio. She is a researcher, educator, and clinician who has devoted herself to the study and treatment of traditionally hard-to treat populations with central nervous system (CNS) disorders. Dr. Sajatovic holds the Willard Brown Chair in Neurological Outcomes at UHCMC/Case Western Reserve University School of Medicine and has subspecialty certification in Behavioral Neurology & Neuropsychiatry.

Keywords

epilepsy self-management

community collaboration

Managing Epilepsy Well Network

medication non-adherence

rural healthcare access

peer-led initiatives