Neuropsychiatric Research Advances Self-Management Programs for Neurological Disorders

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Daniel Simon, MD (Host): Hello, everyone. My name is Dr. Dan Simon. I am your host of the Science@UH Podcast, sponsored by the University Hospitals Research and Education Institute. This podcast series features University Hospitals' cutting-edge research and innovations. Thank you for listening to another episode.

Daniel Simon, MD (Host): Today, I am happy to be joined by guest, Dr. Martha Sajatovic, Director of the Neurological and Behavioral Outcome Center at University Hospitals Cleveland Medical Center. She also holds the Willard Brown Chair of Neurological Outcomes and the Rocco L. Motto Professorship in Child and Adolescent Psychiatry. Dr. Sajatovic studies traditionally hard-to-treat populations with central system disorders. Her research interest focuses on neuropsychiatric outcomes of the brain across the lifespan, including epilepsy, stroke, Alzheimer's disease and Parkinson's disease. Welcome, Martha.

Martha Sajatovic, MD: Thank you very much for having me. It's really a pleasure to be here.

Daniel Simon, MD (Host): So, you know, Martha, for our audience, neuropsychiatric, I think is a little hard to understand. You work in both fields. Tell us what do you mean by neuropsychiatric conditions.

Martha Sajatovic, MD: Yeah, that's a great question actually, and I get asked that all the time by other clinicians, patients, family members. So, we're really talking about that interface between the brain and the mind, sort of the way our central nervous system helps us manage the world, interpret the world, deal with the world. And when a person has a neurological condition, conditions like epilepsy or Alzheimer's or other types of dementias, it will often cause them to have difficulty coping with their life and coping with their world and so, there may be what we call behavioral symptoms or behavioral problems. That could be something like depression or anxiety or agitation. There's a whole slew of different things that can happen and so, that's generally what's referred to with that term.  You know, the implications, as you can imagine, is that it will often benefit from having different types of healthcare professionals help that individual and his family, you know, neurologists, psychiatrists, different members of the healthcare teams with different skill sets.

Daniel Simon, MD (Host): So, you know, as a cardiologist, I know that patients with myocardial infarction have a very high onset of depression after a heart attack. And I would imagine that after a stroke, that would potentially be even greater. Is that part of that mind-body link, that organ damage, especially in a distant organ, can actually cause a psychiatric disorder?

Martha Sajatovic, MD: It actually can. And, you know, as you can probably imagine, there's multiple pathways to where somebody could end up with depression. In some conditions like Parkinson's, the mechanism or pathology that is causing the Parkinson's or eventually causes those symptoms to manifest can actually cause depression. But you can also get depression from, you know, having a catastrophic event like a stroke, you know, depending on how severe it is, or the ongoing difficulties. You know, for example, people with epilepsy not only are dealing with a chronic and yet unpredictable condition, you know, when are they going to have the manifestation of a seizure, but they also have to deal with negative societal attitudes, which is what we call stigma. Epilepsy still, unfortunately, is a highly stigmatized condition. So, if you think about it, it's kind of a double whammy of having that neurological condition plus stigma and it's perhaps not surprising that many individuals, at least at some point, will also have some depressive symptoms or even full blown major depressive episode.

Daniel Simon, MD (Host): So, you do research on the self-management of epilepsy, and it's very interesting…very, very common, the fourth most common neurologic disorder. And I guess your research and others have shown that self-management programs addressing specific targets can help people with epilepsy take control of their health. And you've developed a model called Science to Service in Targeting and Training in Epilepsy Self-Management. Tell us a little bit about that. It sounds very exciting.

Martha Sajatovic, MD: Oh, I'm happy to, it’s one of my favorite topics actually, Dan. So, probably about a decade ago, or give or take a little, I got funded by the Centers for Disease Control and Prevention or CDC to develop a program and be part of something called the Managing Epilepsy Well Network or MEW Network. And part of the mission of that group, this research collaborative, is to develop evidence-based epilepsy self-management program.

So, the evidence part of it is really important. It's not just what I think will benefit patients and then I keep doing that. But we actually have conducted randomized control trials that demonstrate that people with epilepsy who participate in these programs can have predictable improvement in outcomes.

So, we have a program called SMART where we've been able to demonstrate that people who participate in the SMART program compared to treatment as usual or waitlist, have a reduced number of what we call negative health events or epilepsy complications. So, that's great. But then another, I think, very cool aspect of what we are doing as part of the MEW network is scaling up those evidence-based approaches into community and clinical settings. So, making them available to people with epilepsy more broadly. And that's what I really love about that Science to Service Model. So we got funding to do the randomized control trials. And then, we started taking it to other approaches, making it available to people in rural settings. And actually, we have a new project now where we are offering the program in collaboration with epilepsy-focused social service agencies. We're teaching those agencies how to offer the program. So, it is really using science to come up with an approach that we know works and then implementing it in ways that we also know works. So, we use kind of evidence-based implementation models to make sure that on a broad level, we can improve and advance care for people with epilepsy that benefits our patients, it benefits their families, and it benefits our society.

Daniel Simon, MD (Host): Wow, that's really inspiring. You know, one of the other areas that you're quite prominent in is this concept of outreach and engagement of hard to reach populations and in the Cleveland Alzheimer's Disease Research Center, you are leading an Outreach, Recruitment and Engagement Core. Tell me a little bit about what you're doing, reaching out to patients with Alzheimer's and dementia.

Martha Sajatovic, MD: So, I lead the Outreach, Recruitment and Engagement Core or the ORAC Core. We're absolutely thrilled to have this Alzheimer's Disease Research Center in Cleveland, ADRC. And it is a team effort, absolutely. We have multiple cores doing a variety of things. Our overall mission is to advance care and research so that eventually we will have a cure that's available to everybody for Alzheimer's.

But one of the big problems with the current state of our research is that some communities are underrepresented in research. So, we don't have enough African-Americans, we don't have enough Hispanics, where we have data that could help us understand how Alzheimer's or related dementia affects different communities and even more importantly, can help identify what might be most helpful for those groups. We know that Hispanics and African-Americans tend to be disproportionately impacted. So, the way to address that is using a multi-pronged approach. So, I'm very, very fortunate, I have a stellar team that works with me. They are good at doing community engagement. We do a lot of education. We're involved in a lot of live events during COVID. I have to say it was a little challenging getting into the communities that were locked down or had travel restrictions, but we're mostly back in business, I would say. We also use the strength of our clinical health system. So we can look at people who use our services in large health systems like University Hospitals, and offer that to our patients. You know, "Would you be interested in participating in research?"

I've been so impressed that people and families who are living with Alzheimer's, in spite of the stress and burden that so many of them have, that they really want to help. They want to make it better for the next generation. And so again, it's that partnership, that outreach to say, "What can I do right now so that hopefully things will be better for my children and my grandchildren?"

Daniel Simon, MD (Host): Wow. I can't wait to bring you back and we can follow along with your progress. You know, one of the things I find very interesting is your work in sub-Saharan Africa and Uganda on the global front. Bob Salata invited our Harrington Heart and Vascular Institute team to come and help set up the first cath lab and PCI program for heart attacks in the country. And he told us back now over 10 years ago, "Dan, non-communicable disease, non-infectious disease is taking over. It’s going to a greater number of people will be affected by the kind of diseases that we see in America, diabetes, heart disease, stroke, kidney disease because they have rising obesity and diabetes." And I see from you that we've learned that neurologic disorders cause 16.8% of deaths in lower and middle income countries compared to only 13% in high income countries. So, what are you doing in Uganda? What's going on there? What are the diseases that Ugandans are suffering from right now?

Martha Sajatovic, MD: Well, I love your story about setting up the cath lab and, addressing cardiovascular disease. So, let me tell you, Dan, my dream is to put you and your cath lab out of business.

Daniel Simon, MD (Host): Okay, good.

Martha Sajatovic, MD: Because, while it's wonderful and transformative that you have that there and you can provide those services, wouldn't it be greater, even more wonderful, if we could prevent those diseases to begin with? An ounce of prevention is worth a pound of cure.

So, what we're doing, and I have some wonderful colleagues that I'm working with at Makerere University, Dr. Mark Kaddumukasa is the other principal investigator on a project that's funded by NIH, National Institute of Health. So, what we're doing is identifying people who have risk factors for stroke, high blood pressure, diabetes, and lipids that are abnormal, and enrolling those individuals into a program where we can teach them to kind of know their numbers, right? Our primary outcome is systolic blood pressure, which is one of the biggest things that puts people at risk, at least in those settings, for having a stroke, having a heart attack, having a whole host of additional medical comorbidities.

So, that's what we're doing, is we have these standardized curriculum we're doing groups that are led by a nurse. And another important element is a peer educator. So, a peer educator is a patient who has these risk factors and can help deliver the program and teach other people. So, walking the walk, talking the talk, both at the same time. And it is profoundly impactful. And what we have seen, it's much better than giving somebody a lecture or giving them a handout where they may feel less supported by what they need to do. If you think about the time that patients spend with doctors, whether it's in Sub-Saharan Africa or in the United States, it's just a little teeny piece of their life, right? And no matter how wonderful you are as a clinician, it's still, you know, a little bit of influence. But if you can teach people how to help themselves during the rest of the time, outside of that clinical visit, then I think you can really have those longer term payoffs.

Daniel Simon, MD (Host): Yeah. I think you've really touched on a really key issue here. We've learned a lot from the JCRC in Uganda and the use of community healthcare workers to really bring HIV therapies, antiretrovirals…way out into rural areas. And, you know, one of the most amazing success stories in Uganda is the reduction in the HIV positive rate from 40% down to 6-7%, and that all came exactly as you point out from doing culturally sensitive communication through community healthcare workers and sort of coaches away, distant from the clinic and I think that this effort now in stroke and in cardiovascular disease, we can learn a lot from it.

So listen, I really want to thank you for taking the time to speak with us today. It's been great to have you. You're one of my heroes at University Hospitals and I'm sure this podcast will attract a lot of listeners.

For our listeners interested in hearing more about research at University Hospitals, please visit us at uhhospitals.org. Thank you very much.