Living with Epilepsy-Behavioral Health Across the Spectrum

Video Transcription

So, I'm going to be talking today about behavioral health across the spectrum.  I have nothing to disclose, and here are my learning objectives. So, I'm going to identify some common behavioral health concerns in individuals with epilepsy,  describe the role of family background in behavioral health, and then discuss a little bit about implementation of behavioral health screening protocol in a pediatric clinic.  So, I wanted to start with a few slides to get us all on the same page. So, when I refer to behavioral health, what exactly am I talking about?  As you may have heard, other terms such as psychological, psychosocial, psychiatric, mental health. And so, when we think about behavioral health, I like this figure here.  This is the Agency for Healthcare Research and Equality, defining behavioral health as an umbrella term that includes mental health, substance use, life stressors, health behaviors,  which would include things like nutrition, sleep, physical activity, so self-management behaviors, and then resilience and well-being.  So, in a nutshell, the CDC defines behavioral health as the connection between a person's behaviors and the health and well-being of the body and mind.  And what you just heard is the importance that patients with epilepsy place on these things being addressed as part of their epilepsy care.  So, when we think about behavioral healthcare, then, we're looking broadly at support for  those who experience mental health or substance use disorders or symptoms, and their families and communities.  So, I want to emphasize the fact, especially I work in the pediatric world, that we're also thinking about caregivers and the families who are helping kids with epilepsy navigate  their epilepsy on a daily basis. So, that could include mental health interventions. It could include self-management, which you're going to hear about two of those today.  It could also be community resources. And as we heard Scott mention before, one of the things that was so important for him  was getting hooked up in his community with those resources and being able to feel like he was giving back, as well as receiving from those communities.  So, we don't want to underestimate the importance of these community resources. So, as far as mental health in adults, we know, hopefully, all of us by now, that they are common.  So, just a very quick overview, about 50% of adults experience cognitive impairment, 25% depression, 20% anxiety, with a few studies showing that young adults may experience higher  rates of anxiety, 20% ADHD, and about 12% with PNES. And we see some similar numbers in youth with epilepsy.  About 25% experience depression with similar rates of suicidal ideation, 25% anxiety. We see higher rates at 30% of ADHD, and 50% of our youth have learning disabilities or  learning disorders, and 50% also experience developmental delays, which include 15-30% of youth on the autism spectrum.  So, we know that it's important to think about these behavioral health concerns. And a few other things to consider, as well, is that we know that the AEDs can cause mood  or behavior side effects. So, it's really important for us to think about when the symptoms occurred. Was it before or after starting or changing a medication?  And also, some studies have shown that depression and anxiety can worsen side effects to anti-seizure medications.  So, then it's also important to consider adherence, because if people are experiencing significant  side effects and perhaps behavioral health symptoms, does that impact their adherence?  And we know that 30-40% of adults are non-adherent to their AED regimen, and up to 60% of youth and families, and that this increases your risk of seizures threefold, as well as is  related to a poorer quality of life. So, treating behavioral health comorbidities can reduce seizure burden and improve quality of life.  So, I want to pivot just a moment here and talk about family background and how it's relevant and important in thinking about behavioral health in youth with epilepsy.  You're going to hear more about adults in the talks later, so the rest of my presentation today will be focused on pediatrics.  So, family background includes a number of factors, such as race and ethnicity, culture, finances, education, and has become increasingly important to consider in the wake of COVID  and the known disparities for some of our patients. So, in 2022, Huber and colleagues conducted a scoping review of socioeconomic factors  and outcomes in children and youth with epilepsy, and they defined broadly these factors as caregiver income, occupation, area of living, annual income, and home ownership.  And one thing about this scoping review to know is that the inclusion criteria required that the abstract describe a relationship between socioeconomic factors and epilepsy.  So, they found 26 articles and found that the socioeconomic factors influencing adherence were caregiver education, race, marital status, and income, and that socioeconomic factors  influencing educational, seizure, and quality of life outcomes included caregiver occupation, academic achievement, geography, home ownership, income, and sociocultural factors.  There's another scoping review that's currently going on through the Pediatric Epilepsy Research Consortium Health Equity Special Interest Group.  And so, we've been conducting a scoping review to look at the relationship of social determinants of health factors to outcomes in pediatric epilepsy.  But different from the previous review of 26 studies, we are scouring articles looking for this information anywhere in the article.  And so, when we have looked at this for over a year now, and I can honestly say because I've been part of this project, it's been a labor of love, in that we have a lot of  very dedicated individuals giving a lot of their free time, if you can call it free time,  to looking at these articles and trying to find out what do we know about social determinants of health and how they impact outcomes in pediatric epilepsy.  So, this year, earlier, we published some preliminary findings and our lessons learned because we're still working on the scoping review.  And a couple things that I just want to highlight is that in many of the articles, we found they included this information for the sample.  So, there was information on race, ethnicity, gender, geography. But then there weren't any analyses conducted with this information as variables.  One of the other things that we noted is that many times race, ethnicity was categorized as white versus non-white.  So, we really don't know much about the non-white category, where races and ethnicities were  comprised of this group, and how might there be differences among the races and ethnicities that were included in those groups.  The other thing that we noted is that in many cases, there is some data in these articles. It's not the focus of the article. And so, it's not included in the abstract.  It's not even discussed in the discussion. It's embedded somewhere in the text of the results section or maybe in a table.  And so, that's why our review has taken so long because we've combed through all of these articles and read every single word to try to see if that information is in there.  So now that we know that numbers indicate behavioral health screening is important, what do we know about screening and how does family background play a role in screening?  So, a couple of years ago, actually it's been more like seven now, ILAE conducted a survey  of their members and found that half of respondents, both pediatric and adult providers, said that they screened and prescribed for comorbidities.  Twenty-five percent were uncomfortable prescribing and 50 percent of child neurologists rated knowledge of comorbidities as poor or very poor.  So over the past five to seven years, there have been a lot of educational opportunities trying to meet this need because 40 percent of those child neurologists identified screening  and managing comorbidities as a priority. So we're beyond the fact of not knowing whether this is important because we know it is. The patients have said it is.  We know that the numbers tell us that a significant number of our patients experience these. So what can we do about this?  And then a couple of years ago, several of us looked at a survey within the American Epilepsy Society of providers in the United States, and we asked that if there was a behavioral  health provider at the site who was responding, if they could have that person complete this.  If there wasn't a behavioral health provider, then a typical epilepsy provider could also respond. And we found that 80 percent conducted a formal screening.  This was mostly made up of behavioral health providers. And this was most often to determine if further evaluation was necessary, but only 50 percent  of the providers who responded were using a standardized method to do the screening. So clearly, we still had work to do in terms of providing that standardized method.  And then earlier this year, several other psychologists and I looked at, okay, what is out there in terms of here are some frequently used measures that we screen for anxiety,  depression, and disruptive behaviors, which we see a lot of in pediatric clinics. So which measures can we or should we suggest or recommend for use?  So we looked at 41 unique papers for nine commonly used measures and evaluated them into tier 1 and tier 2. Tier 1 meaning that they were validated  in a pediatric epilepsy population. So you saw a couple slides in the previous presentation about psychometrics. What does that look like? We're talking about reliability, validity,  and have these been looked at in pediatric populations. And then in psychology, Hunsley and Mash came up with a principle called the good enough principle. So if we're looking  at what we have available, which measures are good enough for clinical use? But beyond looking at just reliability and validity, what about clinical utility? So back to what  you heard in the previous presentation too, brevity, ease, cost, accessibility, how do we look at these as well? And so again, this was a paper that looked at a very small number  of measures and looked at some commonly used measures was not nearly to the scale of what you heard in the previous presentation. But a couple of conclusions from this work too  were that it's really important to think about what the characteristics are of screening measures. So what we're looking for is a very sensitive measure. We wanted to pick up all  the kids that have these particular issues. So it's going to be less specific. You're going to perhaps pick up some kids that don't actually have a clinical diagnosis, but that's  better than not picking up kids who do. So it's important to think about sensitivity versus specificity. And then what is the goal? The goal of a screening measure is to identify  who might need further assessment and or intervention. It is not to diagnose. And none of these screening  measures are set up using DSM criteria and looking at how we would actually diagnose a disorder. And here are just a few examples. And some of these may be different than what  you saw earlier. But in terms of what we have out there in these different areas, these are, again, just some no cost tools that are available and are easy to find. And what is  a little bit different than what you saw in the previous presentation, too, is that a lot of these are currently being used for clinical use, right? Sometimes the promise  measures get used a lot in research, but not so much in clinical. So where we are in the mental health field, too, is kind of figuring out is what we're using in research what we,  you know, are using clinically and vice versa and how many items it's important to think about. And are we looking at general screening measures? Are we looking at very specific  measures? And I'm going to come back to that in just a minute when I talk about how to implement this. I will also mention that within the American  Epilepsy Society there's a mental health toolkit group that's looking at putting a lot of information  together about what measures are available with a summary of the age range, the psychometrics, so that clinicians can go. And again, one is not going to be recommended over another,  but so that you could pick something that would fit for your particular setting, knowing  that people practice in very different settings. So here's just an example of one, the Pediatric  Symptom Checklist. This has been used a lot in primary care, but has been validated in  an epilepsy, in a pediatric epilepsy population, which we also found the three-factor structure for, so you can look at a total score, but you can also look at internalizing, which  would be anxiety and depression, externalizing, which is disrupted behaviors, and then attention as well. So back to what I mentioned before about considering  social determinants of health, it's important to think about parent literacy level, right? So if we're asking a parent to complete this, if we're asking a child to complete this,  does the child have a neurodevelopmental disorder as well? So we can't just broadly throw out  screening measures and expect that we're going to get valid and reliable responses back, unless we're considering some of this family background that I mentioned before in terms  of what is the parent literacy level, what is the, do you have it available in the language  that the family speaks and understands primary? Also, do we think about this in terms of what's  the cultural understanding in your area of mental health? What's the previous exposure to mental health that families have had? Because many families have had a negative experience,  right? So we want to create this open door and this opportunity for them to have a positive  experience with mental health, and so screening is one way that that can happen if it's integrated into routine care, and I'll come back to that in just a minute.  The other thing to consider is access to care, right? So when we are screening, the next thought is, okay, what happens next? So one of the things to really consider is  what's available where you are, what community resources are available. So the idea is not  just to do it, but to have a plan and a purpose for screening, and to do that with cultural  humility as you consider what your patient sociodemographics look like and what the resources are that are available in your area. So is this even feasible? And an initial question  to think about is, who should we screen? And a three-tiered health promotion approach is  a model of stepped-up care, and Sandy Helmers with the Managing Epilepsy Well Network published on this a number of years ago, looking at this meaning that patients at higher levels  of risk would be offered more intensive services. So with this approach, services can be reserved  and then feasibly allocated for those who need it, promoting comprehensive care while utilizing cost savings. So we can apply this to behavioral health screening for youth with  epilepsy and their families, and as most of you are aware, the American Academy of Neurology now includes mental health screening as a quality indicator for routine epilepsy visits.  So in this example here, step one could include a routine assessment that would be a yearly screen for every patient, which would follow quality indicators as well as provide that  general open door, every patient gets this at least on a yearly screen. So in a second step, though, clinicians would be encouraged to target more comprehensive evaluation for  those children who are at risk for challenges, such as children with treatment-resistant  epilepsy, suspected behavioral health or neurodevelopmental or cognitive symptoms, or children with adherence  difficulties. And then a third step would target those with known recent symptoms and disorders, and you would want to assess current severity and follow up. So in these cases  at step two and step three, we're not talking general screening anymore. This is specific to, okay, I know this patient has struggled with depression and suicidal ideation, so  I'm going to make sure they get a depression screen and an SI screen. So a few things to consider when you would be thinking about setting up a screening protocol is who is  the population, what provider is going to be responsible for this, is this something that takes place electronically, is this done in the waiting room versus the clinic  room, and then what are the next steps? So again, if we're considering social determinants of health in your population, access to and utilization of behavioral health care that  would be integrated into a visit would provide that for a lot more patients than referrals  out to another system. A mom recently told me she had to wait 11 months to see a behavioral health provider for her daughter, and this was an educated family that lived in a very  affluent area near a top academic center. So you think about how this could differentially affect a low-income family or one that lived in a rural area. So again, back to that idea  of what Scott talked about earlier of what are the resources that are available in even getting patients hooked up with other families of epilepsy in their area. And what is the  family's experience with behavioral health care? A lot of times families come to our epilepsy appointments with lots of questions and expectations that problems will be addressed  and fixed at that visit. So what can we do, because we know that many of these problems can't be fixed at one visit, is to start the process. If you don't ask about these behavioral  health problems, guess what? They're still there. Just because you don't know about it doesn't mean the family is not still struggling with it. So what can we do to assist these  families and get them hooked up with the care that they need? So here's just an example. In the pediatric epilepsy clinic, if every patient were to get behavioral health screening,  if there were no concerns, then you would just rescreen in 6 to 12 months. But if there  were concerns, whether those be subclinical or actual above clinical threshold, you would want to evaluate further and assess or send for treatment options. And here's where there's  just a lot of different choices, right? So in some situations you would refer to a behavioral  health provider or the school for a more comprehensive assessment. Or you may refer straight for  a behavioral health intervention. Or maybe you refer to primary care and they're going to manage pharmacological intervention. Maybe you're going to treat with pharmacological  intervention. Maybe they need emergency services in the case of suicidal ideation or intent.  So the bottom line is there are lots of ways to do this. It's finding a protocol that will work in your particular clinic setting. So just very briefly, I feel like if I'm talking  about screening, then it's important to at least mention treatment, right? If the purpose of screening is to find out who needs help and then to think about that help and what  that looks like. Many of you are familiar with pharmacological, but when we say behavioral health intervention, that can mean a lot of different things. It can be a psychosocial,  psychological or educational treatment that focuses on steps taken to cope with or behavioral  changes made to manage epilepsy or its comorbidities. And there are a lot of different treatment  focuses. Some might be on cognitive or changing the way that someone thinks about or perceives the world. It might be changing behaviors like getting more sleep or making choices  about diet or physical exercise. Or it might be tracking adherence and working with the  family to take their medication as prescribed. It might be working on relationships and communication  or problem solving. So broadly, behavioral health intervention can mean any of these things depending on what's indicated from the screening. So impact on clinical care  and practice. Behavioral health is on a spectrum. We see it in adults. We see it in pediatrics. We see it across the board as times as far as different types of things that families  are struggling with. And we also know that family background is related to behavioral health and access to care and is really important to consider. And routine behavioral health  screening is indicated and it can be feasible. Thank you.

Video Summary

The talk covers behavioral health concerns in individuals with epilepsy, highlighting the significance of integrating mental health screening into epilepsy care, especially within pediatric settings. Key points include the prevalence of mental health issues like anxiety, depression, and ADHD among both adults and children with epilepsy. Factors influencing behavioral health, such as family background and socioeconomic conditions, are discussed, stressing the impact of family caregivers' education, income, and cultural factors. The barriers to effective behavioral health care, including side effects from anti-seizure medications and medication non-adherence, are addressed. The speaker emphasizes the importance of implementing standardized screening protocols using sensitive measures in clinical settings and considering social determinants of health. The aim is to identify individuals needing further assessment and connect them to available resources, emphasizing the need for practical, consistent screening methods tailored to specific healthcare environments, ultimately improving patient outcomes and quality of life.

Asset Subtitle

Presenter:
Janelle L Wagner, PhD, is a pediatric psychologist and Research Associate Professor at the Medical University of South Carolina. Dr. Wagner’s program of research focuses on behavioral health assessment and intervention for youth with epilepsy. She has been funded as PI and Co-I on private foundation and federal projects. Dr. Wagner has over 100 peer-reviewed publications, serves and holds leadership positions on national and international epilepsy task forces and committees, and serves on three scientific journal editorial boards.

Keywords

epilepsy

behavioral health

mental health screening

pediatric care

social determinants

screening protocols