Behavioral Health Challenges in MS

Podcast Transcript

Neuro Pathways Podcast Series

Release Date: November 15, 2024

Expiration Date: November 15, 2025

Estimated Time of Completion: 25 minutes

Behavioral Health Challenges in MS

Grace Tworek, PsyD

Description

Each podcast in the Neurological Institute series provides a brief, review of management strategies related to the topic.

Learning Objectives

• Review up to date and clinically pertinent topics related to neurological disease
• Discuss advances in the field of neurological diseases
• Describe options for the treatment and care of various neurological disease

Target Audience

Physicians and Advanced Practice providers in Family Practice, Internal Medicine & Subspecialties, Neurology, Nursing, Pediatrics, Psychology/Psychiatry, Radiology as well as Professors, Researchers, and Students.

ACCREDITATION

In support of improving patient care, Cleveland Clinic Center for Continuing Education is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.

CREDIT DESIGNATION

• American Medical Association (AMA)
  Cleveland Clinic Center for Continuing Education designates this enduring material for a maximum of 0.50 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
  
  Participants claiming CME credit from this activity may submit the credit hours to the American Osteopathic Association for Category 2 credit.

• American Nurses Credentialing Center (ANCC)
  Cleveland Clinic Center for Continuing Education designates this enduring material for a maximum of 0.50 ANCC contact hours.

• Certificate of Participation
  A certificate of participation will be provided to other health care professionals for requesting credits in accordance with their professional boards and/or associations.

• American Board of Surgery (ABS)
  Successful completion of this CME activity enables the learner to earn credit toward the CME requirements of the American Board of Surgery’s Continuous Certification program. It is the CME activity provider's responsibility to submit learner completion information to ACCME for the purpose of granting ABS credit.

Credit will be reported within 30 days of claiming credit.

Podcast Series Director

Imad Najm, MD
Epilepsy Center

Additional Planner/Reviewer

Cindy Willis, DNP

Faculty

Grace Tworek, PsyD
Mellen Center

Host

Glen Stevens, DO, PhD
Cleveland Clinic Brain Tumor and Neuro-Oncology Center

Agenda

Behavioral Health Challenges in MS

Grace Tworek, PsyD

Disclosures

In accordance with the Standards for Integrity and Independence issued by the Accreditation Council for Continuing Medical Education (ACCME), The Cleveland Clinic Center for Continuing Education mitigates all relevant conflicts of interest to ensure CME activities are free of commercial bias.

The following faculty have indicated that they may have a relationship, which in the context of their presentation(s), could be perceived as a potential conflict of interest:

The following faculty have indicated they have no relationship which, in the context of their presentation(s), could be perceived as a potential conflict of interest: Cindy Willis, DNP.

CME Disclaimer

The information in this educational activity is provided for general medical education purposes only and is not meant to substitute for the independent medical judgment of a physician relative to diagnostic and treatment options of a specific patient's medical condition. The viewpoints expressed in this CME activity are those of the authors/faculty. They do not represent an endorsement by The Cleveland Clinic Foundation. In no event will The Cleveland Clinic Foundation be liable for any decision made or action taken in reliance upon the information provided through this CME activity.

HOW TO OBTAIN AMA PRA Category 1 Credits™, ANCC Contact Hours, OR CERTIFICATE OF PARTICIPATION:

Go to: Neuro Pathways Podcast November 15, 2024 to log into myCME and begin the activity evaluation and print your certificate If you need assistance, contact the CME office at myCME@ccf.org

Copyright © 2024 The Cleveland Clinic Foundation. All Rights Reserved.

Introduction: Neuro Pathways, a Cleveland Clinic podcast exploring the latest research discoveries and clinical advances in the fields of neurology, neurosurgery, neuro rehab, and psychiatry.

Glen Stevens, DO, PhD: The invisible symptoms of multiple sclerosis, like overwhelming fatigue, painful neurological disruptions and unpredictable cognitive difficulties are not only physically taxing, but can also take a significant toll on an individual's mental health. In today's episode of Neuro Pathways, we're discussing the behavioral health challenges facing patients with multiple sclerosis and the important role a multidisciplinary team plays in their care. I'm your host, Glen Stevens, neurologist/neuro-oncologist in Cleveland Clinic's Neurological Institute. I'm very happy to be joined by Dr. Grace Tworek. Dr. Tworek is a clinical health psychologist at the Mellen Center for Multiple Sclerosis Research and Treatment in Cleveland Clinic's Neurological Institute. Grace, welcome to Neuro Pathways.

Grace Tworek, PsyD: Thank you so much for having me. I'm excited to be here.

Glen Stevens, DO, PhD: Well, we're excited to have you, but why don't you introduce yourself to our audience. Tell us how you came to Cleveland, your training and what you do on a daily basis.

Grace Tworek, PsyD: Sure. So I'm originally from a small town called Spruce Grove, Alberta, Canada, and I made my way on over here to Cleveland after completing my doctoral training in Fort Lauderdale, Florida. So that's really where my passion for health psychology developed. And I knew I wanted to expand my training, which led me to a fellowship here at Cleveland Clinic, actually at the Mellen Center.

So through my time during my fellowship, I really realized how impactful psychology and behavioral medicine services can be in the lives of those living with multiple sclerosis. And I knew really early on in my training that I wanted to have a career here in Cleveland. So now I'm happy to say I'm going into my third year as professional staff member here at the Mellen Center, and I have an outpatient therapy clinic via the Mellen Center where I work with patients diagnosed with MS, autoimmune encephalitis, MOGAD, and NMO, and I also train two fellows, and I've also developed an inpatient psychology service for our Mellen patients as well. So I'll see folks we would see at the Mellen Center when they are here at main campus in the hospital and I create a bridge over to outpatient services at the Mellen Center to allow folks to get access to those mental health services and reduce that wait time for them so they can see me outpatient via Mellen Center as well.

Glen Stevens, DO, PhD: Well, Grace, I'm very excited with what you told me. The thing I'm most excited about is that you're from Canada, because I'm Canadian.

Grace Tworek, PsyD: No way.

Glen Stevens, DO, PhD: And I was actually married in Lethbridge, Alberta, so we have a kinship from the province, so we're just going to have a love fest here today as we move through. So it's very exciting. See, I've already learned something important today.

Grace Tworek, PsyD: Exactly. Exactly.

Glen Stevens, DO, PhD: So my mother had multiple sclerosis and she was diagnosed back in the sixties. And of course what was known back then significantly different from what was known now. And as you can imagine, took quite some time for her to be diagnosed. And I think she was on the other side of what we're talking about today, but I think that people just thought that she was functional, crazy would probably be the word would've been used back then, didn't really understand what the process was as it went through. So I'm glad that we're having a chance to talk about this topic here today, because having lived with someone until she passed away from the complications from multiple sclerosis, I'm glad to have you here and for what you do on a daily basis. Tell us how prevalent behavioral health problems like mood disorders are in the multiple sclerosis population.

Grace Tworek, PsyD: I'm actually so glad that you ask that because I think that's a topic we don't really discuss enough. But the current literature base points to a significantly increased prevalence rates of both anxiety and depression. Up to about 50% of folks diagnosed with MS may experience depression, and about 40% may experience anxiety at some point in their journey. This is about four times higher than those diagnosed with other neurological conditions. And then when we're speaking more about the general population, just to compare, rates of anxiety and depression have actually almost nearly tripled according to APA or the American Psychological Association following the pandemic, with depression around 28 to 37% prevalence rate and anxiety around 20 to 30%. This is really important as I'm not sure our current literature database really reflects anxiety and depression well in MS right now because we know that there's a higher prevalence, but I'm not sure we've really adequately measured it post-pandemic so that's really something to keep in mind as well. So we know that the prevalence rates are high, but I'm not sure we've truly captured post-pandemic what that might look like now.

Glen Stevens, DO, PhD: And give us an example of some of the behavioral changes that we're looking at. I assume we're looking at things such as aggression, impatience, irritability, lability, apathy, other things?

Grace Tworek, PsyD: Absolutely. So a lot of what I hear is, "I feel like my fuse is shorter than it used to be. I can't tolerate things like I used to be able to, so I don't feel quite like myself," and that can look different when you're at home with your family, when you're at work, when you're out and about being social with friends. So a lot of what I hear is,  “I just don't quite feel like myself or I don't feel motivated to do the things that I used to really enjoy or because of a change that's occurred for me physically I want to do the things that I used to do, but I'm not able to do them in the same way. And so that takes away from the joy or pleasure I used to have in doing these things.”

Glen Stevens, DO, PhD: So if we look at the drivers of the behavioral problems, I think you just mentioned one of them, and that would be that I can't do what I used to do so I'm irritable, I'm less happy. But outside of that, what are the drivers of the behavioral changes?

Grace Tworek, PsyD: Sure. In my own practice, I often see stress as playing a large role in both physical and mental health. And when I say stress, I'm really referring to navigating the complex challenges that occur from many folks following onset of MS symptoms as well as diagnosis in their day-to-day lives. So this might be at work, at home and interpersonal relationships. When stress is experienced, we know it can often trigger some sort of response, that fight or flight that we talk about a lot when our sympathetic nervous system is triggered to go off.

So this can cause those short-term impacts we all think about, sweating, trembling, increased heart rate, but really what I see a lot is more long-term impacts of prolonged stress. So impacts on mood, cognitive functioning, feeling like you're in a fog, and even the way one experiences their symptoms of MS. So stress can be a really big driver in how one experiences MS symptoms, mood and just faces challenges in their day-to-day lives.

Glen Stevens, DO, PhD: So does the psychologist see all the newly diagnosed MS patients, or is there a screening tool that's used and only if they score something set or how do you get involved?

Grace Tworek, PsyD: Yeah, so initially, every patient we interact with at the Mellen Center will complete some validated mental health screeners that assess for the presence of potential anxiety and depression. This can really help us to determine as a center who might be a good fit for our services. In an ideal world, I truly think every single person that steps through our doors could probably benefit, but unfortunately we are a small team. So this is really where clinical judgment plays a really big role and that interdisciplinary teamwork. So we really work closely with our neurologists, our APPs, physical therapists, occupational therapists, and speech therapists to talk about different things they may notice in their own clinical practice that might indicate someone could be a good fit. So kind of the things that we were talking about, if someone's saying, "I'm not feeling like myself," or maybe, "My partner is pointing out that I'm more irritable than usual." They'll reach out to us. We'll start a conversation and get those folks connected with us here and our team to make sure that we can meet their needs.

Glen Stevens, DO, PhD: And the screening tools that you use, anything in particular that you like?

Grace Tworek, PsyD: Typically, we use the GAD or the GAD-7 and the PHQ-9. The GAD looks at anxiety symptoms. The PHQ looks at depression symptoms. One thing that's really important to note though, is that sometimes many of these symptoms can overlap, especially with MS symptoms. So on our PHQ-9 or the Patient Health Questionnaire, a lot of times those symptoms are going to be fatigue, moving more slowly. Well, these are things that we can say may also be due to MS symptoms, so there is some overlap there so it's important that we talk about those things with our patients because I have had folks log in and say, "Hey, I noticed..." Because it gives them a little indicator of what they scored. "My score is staying pretty steady, but I'm feeling objectively better. What's going on there?" So that's a discussion we even have in our sessions as well.

Glen Stevens, DO, PhD: So I'm a patient at the Mellen Center and I've been diagnosed with MS and I do the screening tools and it looks like I've got some behavioral issues and the physician and I chit-chat about it a little bit and says I should come and see you. So I come to see you, what do you do with me? Take me through the appointment.

Grace Tworek, PsyD: So initially we really try to make our treatment plans as individualized as possible. We really want to spend some time getting to know you, understanding your own MS journey, what symptoms first look like. Did you have any mood concerns prior to MS symptoms and diagnosis? Does that look different now with diagnosis and with symptoms? What does it look like in terms of day-to-day life stressors? How does MS play a role in all of this? So we really want to begin to understand who you are as a person. And then at the end of that visit, we create a small plan. Okay, how often should we see one another? What fits for your schedule? And from there we start to, I call it build your tool belt.

So one of our main goals initially in treatment is giving folks the skills to make stressors in their day-to-day life feel more manageable. We want to give them the tools so that they can take them out into their day-to-day life, use those skills and get back to doing the things that they love with the people that they love. And some of those tools look like deep breathing, meditation and finding different ways to practice that in a realistic way in your day-to-day life.

Glen Stevens, DO, PhD: And do you guys incorporate just one-on-one meetings or do you do any group meetings with patients that have similar behavioral concerns?

Grace Tworek, PsyD: Great question. We do both. We have quite a few different group therapy options that we offer here at the Mellen Center. One is a weekly support group, so anyone who has seen us here in psychology and is interested in connecting with others for support is eligible for that group, and it is once a week. Then we have some monthly groups as well. Those include a men's group. We found that there was an interest for some of our men diagnosed with MS to connect with one another, and they wanted to find those connections in a group therapy.

So we've created a men's support group and we also have what we call our young professionals group. That group is made up of folks who are managing MS, maybe going back to school, working full-time, considering raising a family. Some of them are considering maybe stepping away from their job, but it's the balance of things that someone in a young professional role may be facing while also managing MS and then of course a caregiver support group as well because we know caregivers play a large role in all of this as well.

Glen Stevens, DO, PhD: Is there computer-based programs that you can use for patients? Maybe that's a little bit more for cognitive behavioral therapy issues that patients might have, but do you incorporate that?

Grace Tworek, PsyD: We do not incorporate that at this time, but I do know that our speech therapist here at Mellen Center does incorporate those tools, and I always lovingly refer to her as she's like your physical therapist from the shoulders up. And I know she incorporates some of those tools and folks that I've spoken with have really benefited from them.

Glen Stevens, DO, PhD: Will patients graduate from seeing you or will they see you long-term wise?

Grace Tworek, PsyD: So that looks a little bit different for each and every patient that I meet, but what I was talking about building your tool belt at the beginning of our services, typically the skills I was referring to take anywhere from about three to five sessions for us to work through in individual therapy. And then from there we create a plan. Some folks say, "You know what, I feel really confident in these skills. They're getting me back to doing things I love. I'm enjoying my time with my family and my friends. Can we step it back a little bit, maybe check in every couple of months, just make sure things are going smoothly and I continue to use these skills well." Some folks say, "You know what, alongside those skills, I'm noticing I'm having particular thought patterns that maybe aren't very helpful for me." So we say, "You know what, maybe let's have a few more sessions, peel back some layers, look at those thoughts and see if we can find some different cognitive therapy components to incorporate to help you reframe those thoughts that you're having," and we take it from there. So we really individualize based on person, and I can tell you that some folks I've been seeing about every other month or so since I was a fellow, so some were long term and then some folks I see a handful of times and they say, "You know what? I'm feeling great. I will let you know if I need you again." So I always jokingly say, "I'm here as much or as little as you need me."

Glen Stevens, DO, PhD: And what percentage of patients will need to go on some type of medication?

Grace Tworek, PsyD: Typically, in the population that I see, so in my own practice, I would say about between 30-50% of folks that I see work alongside either the neurology provider here. We also have some psychiatry folks that are joining our team shortly here at Mellen to incorporate medication management as well. So we work hand in hand to make sure that medication is aligning with the treatments that we're doing on the psychotherapy side of things to make sure that they have the tools they need.

Glen Stevens, DO, PhD: Well, when I started, we had steroids to treat multiple sclerosis. Now you've got dozens of medications, we call them disease modifying therapies, so it changes the disorder. But how do you see behavioral changes over time as the disease burden progresses?

Grace Tworek, PsyD: With some of the changes that we've seen in available disease modifying therapies or DMTs, it does impact the types of conversations that we have. So certainly we can never say we know what the future may hold for each individual person that we meet with, but we do know we have increasing confidence in these therapies to provide a level of stability for them. So this means that our goals really begin to focus on promoting what matters most to that person, how we promote that in their day-to-day lives with the tools that they have. But some folks that I meet with have experienced change in physical functioning. So how we really go about that is looking at the things that they love to do or have loved to do in the past and trying to break down those activities.

So for example, if I'm meeting with somebody who really enjoyed and loved hiking in the past, but because of physical limitations, they're no longer able to hike like they used to, we take a deeper look at that activity. What was it about hiking? Was it the activity itself? Was it the environment that you were in? Was it who you went hiking with? Once we can identify the components that promote joy within that activity, we can find some ways to adapt and adjust to that. So maybe it was really being outside, hearing the birds and being with a loved one that made you feel so good. Can we find other activities that promote that same feeling, even if it looks a little bit different than it did previously?

Glen Stevens, DO, PhD: Do any of the disease modifying therapies create behavioral problems or is that uncommon?

Grace Tworek, PsyD: I can say I haven't seen much of that in my own practice, but generally we work side-by-side with our neurology team. So if there is ever something that comes up and I say, "Hey, I'm not sure if that's related to medication or not,” we'll reach out to our neurology team. I have to say that's one strength we have here at the Mellen Center is that we all work in tandem so beautifully that if I have a question or they have a question, we're going to get to the bottom of it. We're going to find out what that means for that person.

Glen Stevens, DO, PhD: So I see that in Parkinson's disease and various disorders or incorporating a lot of exercise into the disorder, is that part of the behavioral treatment strategy is some type of exercise incorporation?

Grace Tworek, PsyD: So I can definitely say that many, many of our providers here say, move your body how it feels good, do things that make you feel good. And so oftentimes we will incorporate that in some different behavioral strategies. So behavioral activation is a tool that we use often. Usually when folks are saying, "I know I love to do this thing and I know I feel good after, but I'm not feeling as motivated to do that thing." So sometimes we find ways to schedule that time to make sure they're doing physical activity, going on that walk, using that tandem bike, doing things that they know make them feel good, and we schedule that time, we put it aside and make sure that they have a way to check that off and remain accountable to knowing that that's an activity that makes them feel good.

Glen Stevens, DO, PhD: So you mentioned, I think you also see patients with neuromyelitis optica spectrum disorder and some of the encephalitides. How are those populations different from a behavioral standpoint?

Grace Tworek, PsyD: So especially when it comes to autoimmune encephalitis and NMO, we actually have less data when it comes to prevalence of mood disorders. And it was one of our neurologists here at the Mellen Center that said, "Hey, we've never really had behavioral medicine or psychology involved in the multidisciplinary care of these folks." So when I was a fellow, I identified that as an interest area for myself is how can we expand it and grow and learn about that? And that has been an interest area for myself. And I can proudly say that I now have a support group that runs monthly for autoimmune encephalitis patients, and we've found that it has been life-changing for some of these folks to be able to connect and even just to meet somebody else that has the same or a similar diagnosis as them. Some of these disorders are rare, and many times when these folks are bringing it up, even with friends and family, they've never heard of this diagnosis before. So even being able to get them connected with folks who can say, "I hear you, I understand, and I've experienced that," can be such a validating and supportive experience for them.

Glen Stevens, DO, PhD: So I assume there's a lot of Facebook groups for MS and a lot of the degenerative disorders. Good thing, bad thing. What's your experience with them, with patients?

Grace Tworek, PsyD: There definitely are tons and tons of support groups out there. Usually as a rule of thumb, what I say to folks that I work with, if you find it to be supportive for you, engage in it with caution. These groups aren't moderated, and sometimes we're sharing information that we don't know if it's necessarily accurate or truthful. And typically, folks go online to share the best of the best experiences they've had and possibly the worst of the worst. We often don't get that middle ground average experience. So I oftentimes say to folks, if it's something that you get comfort from, monitor that. If it ever comes to a point where you're noticing that you're not finding comfort or support in that, maybe that's a good opportunity to disengage and engage in a supportive services that are monitored by somebody like myself, by a licensed psychologist or another licensed mental health professional.

Glen Stevens, DO, PhD: And it seems obvious, but talk a little bit about the role of the caregiver, family members in the managing, monitoring, assisting with behavioral change.

Grace Tworek, PsyD: Families and caregivers really play a large role for many folks along their entire MS journey. It's really important to feel like you have a place where you can be yourself, share your challenges, and feel supported along the way. For some of these folks, that's how they end up in our support groups. It's somebody close to them saying, "Hey, I think it could be helpful for you to talk to somebody." And for some folks, this is the family they were born into, and for others, this is the family that they make for themselves, right? But if you ever find that you have limited support or you feel like you don't receive the support that you need by those who are around you, this can be a really good reason to reach out to a trusted provider.

Support groups can be a really good way to connect with and find that support if you're not feeling it. But it's also really important that we take care of our caregivers as well, because many of them are there. Day in, day out, each of these appointments, they are there right alongside the folks that we serve. So that's why we also offer that monthly caregiver support group that I alluded to before, because we know it's really important whether you're in a caregiver role or whether you are somebody who has been diagnosed and is actively managing a diagnosis that you take care of yourself. I always say you cannot pour from an empty cup.

Glen Stevens, DO, PhD: Excellent. Grace, areas that we haven't covered that you think are important for our listeners?

Grace Tworek, PsyD: I think the only closing, closing statement or area that I would like to touch on is that if you ever find that you're having difficulty managing any symptom, whether it's mood, whether it's changes in functioning, there are always areas to find additional support. So if you feel like you could benefit from having a space that's just for you, where you can come, talk about things and leave them there and know that you're not going to have to see that person at your Thanksgiving dinner or at your ball game on the weekend, reaching out to a trusted provider can help get you connected with someone like myself and that is exactly what we are here for, to support you, to be in your corner and to help you build up some skills to make any of those things that are popping up, feel just a little bit more manageable.

Glen Stevens, DO, PhD: Well, Grace, the work you do is very important to our patients, and I'm glad that the Mellen Center has incorporated psychologists into the care of their patients. It's something that my mother could have certainly benefited from many, many years ago. So I'm very pleased to see this moving forward, and I appreciate all the work that you're doing and look forward to seeing you back and hearing more about the great things that you're doing. Thanks for joining us.

Grace Tworek, PsyD: Thank you so much. That means a lot. I'm so glad to be here, and I really think that we're ever-growing in terms of the different services and things that we can offer here at Mellen.

Conclusion: This concludes this episode of Neuro Pathways. You can find additional podcast episodes on our website, clevelandclinic.org/neuropodcast, or subscribe to the podcast on iTunes, Google Play, Spotify, or wherever you get your podcast. And don't forget, you can access real-time updates from experts in Cleveland Clinic's Neurological Institute on our Consult QD website, that's consultqd.clevelandclinic.org/neuro or follow us on Twitter at CleClinicMD, all one word. And thank you for listening.

Closing: This concludes this episode of Neuro Pathways. You can find additional podcast episodes on our website, clevelandclinic.org/neuropodcast, or subscribe to the podcast on iTunes, Google Play, Spotify, or wherever you get your podcasts. And don't forget, you can access real-time updates from experts in Cleveland Clinic's Neurological Institute on our Consult QD website. That's @CleClinicMD, all one word. And thank you for listening.