An online mindfulness-based group intervention for tics

[00:00:43] Dr. Hannah Reese: Thank you. 

[00:00:44] Mr. Alan Brown: Thank you.

[00:00:45] Dr. Sarah Lidstone: All right, so I'd like to get started for our audience perhaps Hannah, you could, answer this question can you please describe the current landscape of how tics are treated in adults, also in children, if you could speak to that before the study was done.

[00:00:59] Dr. Hannah Reese: So [00:01:00] I think people commonly think about medications as the first line treatment for tic disorders. But we've actually seen a shift in the last 10 or 15 years as a result of some great research examining psychosocial approaches for managing Tourette syndrome, tic disorders, and especially comprehensive behavioral intervention for tics, or CBIT.

And so, a few years ago, the American Academy of Neurology actually put forth some treatment recommendations suggesting that CBIT should actually be the first line intervention for tic disorders relative to other psychosocial interventions and relative to medication. So we're, seeing a real shift toward more psychosocial approaches.

[00:01:42] Dr. Sarah Lidstone: And I know very often patients don't have good responses to medications even, so do you know anything about how effective the existing therapies are already?

[00:01:52] Dr. Hannah Reese: Yeah. So CBIT is the first line approach but it is by no means a cure. So we see that in the two sort of [00:02:00] largest, most rigorous multicenter trials for CBIT, there was one done in kids and one done in adults. It's slightly more effective for kids than adults. We saw close to 40 percent response rate.

So that's where folks seemed much improved or very much improved at the end of the intervention for adults and slightly higher for kids.

[00:02:20] Dr. Sarah Lidstone: And so why did you select mindfulness as an intervention for this population?

[00:02:25] Dr. Hannah Reese: So my motivation came out of my clinical interactions with patients and that I was doing CBIT in the clinic. I was one of the therapists on the major adult trial for CBIT. And I was really amazed by some of the gains that I was seeing. But I also felt like maybe we could offer some more to patients.

And at the same time, in my training, I was being exposed to mindfulness and the different practices and ideas within it. There are a number that really, I think, connects well to Tourette's. So we know from prior research that mindfulness can help with attention [00:03:00] regulation and improve bodily awareness.

And those are really essential skills for anyone trying to regulate a movement. And then we also know that a lot of mindfulness based teachings help people develop the capacity to be with uncomfortable or difficult sensations, thoughts, emotions. Some of the earliest mindfulness work done by Jon Kabat Zinn was in pain, which can be a sort of somewhat similar experience to the premonitory urge that people with tics experience. And so we thought those strategies for really building that capacity to be with that discomfort, to sit with it would be particularly helpful. And then we also know that mindfulness can reduce stress and improve emotion regulation.

We know that tics are influenced by stress and the sort of emotional context of the person. So that could help make the tics less likely to occur in the first place. And then [00:04:00] finally, we know that mindfulness can really help people increase their sense of kindness and self compassion for themselves.

And we know that with such a publicly stigmatizing disorder. A lot of folks with Tourette's or tics carry around a lot of sort of blame and judgment of themselves. And we thought that that aspect could be particularly helpful for folks.

[00:04:24] Dr. Sarah Lidstone: So many different targets amenable to mindfulness based practice and Alan, I'm sure you have a unique perspective as well as somebody who practices mindfulness also has Tourette's syndrome and teaches others how to do these skills.

[00:04:38] Mr. Alan Brown: Yeah, I think everything that Hannah says resonates with my experience, but I discovered them sort of on my own and in isolation. So I first started teaching mindfulness and practicing mindfulness as a high school educator. Interested in stress and kids and gosh, the kids are so stressed. I was lucky to find myself in trainings.[00:05:00] 

which turned that back on myself to say, you know, if you're going to try to offer these things to other people, what does your own mindfulness practice look like? And as I deepen my mindfulness practice, I think at first I had some sense of, oh, there's this global nervous system relief that I experience when I pay attention to my breath or when I do a body scan or something like that.

So, oh, when you turn down the volume on the nervous system, so to do the tics, sometimes, go down a little, I have some relief. But the more I practiced, the more I began to understand some of the teachings about working with pain, working with discomfort, distress tolerance, all of those things.

And it actually wasn't until I did as an adult CBIT, and learned about the premonitory urge. So I, I'd never kind of put all of these different pieces together. And I'd been practicing mindfulness for quite some time with some relief, but really not kind of directly targeted to my experience of urges and tics.

And it wasn't until [00:06:00] I started realizing, Oh, that's where I feel an urge. That's a different place than where I feel the tic. Oh, I can ride this urge. I have the tools because I had practiced mindfulness for some time. I have the tools to be able to stay with this discomfort to be able to not do the tic. And sort of the difference between CBIT, which was, compete with that urge or do something else.

That was maybe hard for me or it didn't feel as natural as a mindfulness practitioner to not have some tools for maybe soothing that discomfort, maybe just being with that discomfort, experiencing that discomfort, noticing it. And, and so I kind of put the same things that Hannah had put together, but separately and we connected after that.

And this particular trial was born out of that.

[00:06:42] Dr. Sarah Lidstone: So that's an excellent segue into the next question, which is, can you just describe this intervention describe the program? Sounds like it was nine weeks or so one visit a week, but maybe give us a high level overview of what is involved. 

[00:06:55] Dr. Hannah Reese: Yeah. It was an eight week intervention and it was delivered fully [00:07:00] online, which was a way for us to try to develop the intervention in a way that would be accessible to people. I'm sure you know how hard it is for many people with tics to find somebody who knows anything about them especially if they don't live anywhere near an academic medical center.

It was delivered fully online over zoom. It was done in a group format. They had about six to eight people in every group. And there were once a week, 90 minute video conferences, and there were really three phases of the program. The first couple of weeks were just focused on what is mindfulness and what are some foundational mindfulness practices, things like breath, focus, meditation, body scan, just trying to build some foundational capacities.

And then the middle section of the course was really focused on this urge tic relationship. And as Alan said, helping people develop the capacity to kind of notice the urge as it arises, soothe the urge, and ultimately allow it to be there and to subside without [00:08:00] engaging in the tic and then the final two sessions were really about consolidating what folks had learned applying mindfulness to other areas of their life and making a plan for sustained practice after that program ended.

[00:08:16] Dr. Sarah Lidstone: And did you think that there's some benefits for group versus individual therapy in this type of format?

[00:08:23] Mr. Alan Brown: Yeah I think we saw often participants even commenting in session, I wasn't sure how this was going to be. It was a little bit nervous to be around other people with tics. This is for many people, first time I'm in a group like this. But wow it's so affirming to know that I'm not alone. Wow.

It feels good to be able to be around other people. It feels helpful to hear from other people's experience. I think the sense of group support, solidarity, if you will, is in fact an important component of what people experience.

[00:08:56] Dr. Sarah Lidstone: Yeah many of these hyperkinetic movement disorders can be so isolating, can't they, for [00:09:00] people? They feel a lot of, as you mentioned earlier, Hannah, the stigma. And so that is one way to help with that as well.

[00:09:06] Dr. Hannah Reese: Yeah, we had a number of people say to us, that I've never met anyone else with a TIC disorder, and this was their first opportunity to do that.

[00:09:15] Mr. Alan Brown: I think that the Zoom format also is a little bit of a lower or safer entry point, that I'm not stuck in a room where if it doesn't go well or if I feel much more exposed in person versus I can turn my camera off, I can turn my microphone off if I'm self conscious about what I'm doing, or I can pin the instructor and not look at other people and see what they're doing.

So there's, I think just a different level that being on Zoom allows people to dip their toes in the water of being around other people who are ticing. 

[00:09:49] Dr. Sarah Lidstone: Yeah, that's fascinating. Tell us about the control intervention. Because it wasn't a no treatment control. The control group actually had a pretty substantial amount of support. So did you [00:10:00] want to share what that looked like?

[00:10:01] Dr. Hannah Reese: Yeah, so we wanted it to be a really robust control condition. And so it was called psychoeducation relaxation and supportive therapy. It was identical in duration and format. But the focus of the intervention was on psychoeducation. So really spending a few weeks focusing on phenomenology of tic disorders, prevalence, course, etiology, comorbid disorders and consequences of tic disorders, and then transitioning into relaxation strategies. So diaphragmatic breathing, progressive muscle relaxation, which actually are part of CBIT. And we included those because we wanted to see if MBIT provided benefit above and beyond relaxation, right?

Which we know can occur with mindfulness based interventions. And then a few weeks around are healthy habits, communication and self esteem toward the [00:11:00] end of the program.

[00:11:00] Dr. Sarah Lidstone: So still, yeah, quite a robust educational program with some skills interwoven in there as well. 

And can you describe for the listeners in general, what did the results show? What did we learn?

[00:11:11] Dr. Hannah Reese: Yeah, so our primary outcome was looking at change in tic severity score on the YGTSS from baseline to endpoint, which is week nine. And we saw that the MBIT was associated with significantly more reduction in tic severity than the PRST group. And so, we had an effect size of about 0. 85 for total tic severity, Cohen's D of 0. 85 between the two groups in terms of degree of change and a slightly larger difference between the two groups, when we looked at impairment on the YGTSS, so it was a Cohen's Day of about 0. 99. So both groups did improve, but EMBA improved more.

[00:11:53] Dr. Sarah Lidstone: Can you talk about response rate and what you noticed?

[00:11:55] Dr. Hannah Reese: Yeah. So at post-treatment we saw that 69% of [00:12:00] the MBIT group, the individuals who received MBIT were considered responders to the treatment, meaning that they were rated as very much or much improved by our independent evaluator and in contrast, we only saw about 13 percent of the PRST participants received this rating and we were really encouraged by the 69 percent rating because this is a good bit higher than what we see in CBET, which is closer to slightly under 40%. But of course this is a small pilot study and we need to replicate these findings in a larger sample.

[00:12:36] Dr. Sarah Lidstone: And can you speak to what anecdotally people were talking about during, during the trial? So they're coming in, once a week for eight weeks. And what did you observe on the ground?

[00:12:48] Mr. Alan Brown: I think we saw a whole range of experience, including at the outset the wow I've never paid so much attention to my tics. I've never been around people with tics. For some people there's a temporary [00:13:00] tic worsening effect or wow, I'm just more aware of what's always been here?

It's hard to say as we move through, we kind of talked earlier about the, wow, this group experience, that's something also new and I'm feeling more settled in sort of my experience of talking about paying attention to being around other people with tics and for so many people the sense that wow, I have these strategies and when I do them, I feel different.

Whether that's, I feel different about myself. I was personally really struck by the number of people who mentioned the self compassion, this element of kindness, this element of maybe not being so hard on myself. That was personally also very touching to hear people talk in that way, but the experience of some relief that I have something different that I can do and that it feels kind of quote unquote more within my control that I have some strategies that I feel I can deploy myself.

[00:13:56] Dr. Hannah Reese: I would echo all of that, and I think another thing that [00:14:00] people often reported was a sense of surprise, in that they thought that they knew everything about their tics. And then when they started paying really close, careful attention to things, they realized things weren't exactly what They thought they were. They started noticing their urges more and realizing that maybe they had a little bit more choice than they thought in some instances and that, oh, wow, these urges can go away without doing anything about them. And again, I think like Alan said, that provided people with a greater sense of sort of freedom or their control over things.

[00:14:38] Dr. Sarah Lidstone: It's one of the benefits of therapy. We do this work in our clinic in Toronto and teaching someone a skill, there's an embedding of agency and a feeling of control that simply doesn't really happen with the medication.

So I think that's really interesting, and it's funny, I also notice there tends to be a self compassion deficit in patients as well. So that can be a therapeutic [00:15:00] target in its own right, that can be very powerful for patients, for sure.

[00:15:03] Mr. Alan Brown: It's a really important one especially for folks who are interacting with the medical community, right, I will speak from my own perspective, I was so used to thinking about myself in a way in this language of disorder, deficit, and really what we internalize is the sense of brokenness, right?

And an unfixable broken. If there's something wrong with me. And that is, to lift that even a little bit. It's such a, it's such a key component, such a gift to people. 

[00:15:31] Dr. Sarah Lidstone: Oh, I could talk this this for longer than we have sure. 

[00:15:34] Mr. Alan Brown: Me too. 

[00:15:36] Dr. Sarah Lidstone: How did, the effects change over time? So you did a very well designed study where you measured kind of baseline post intervention and then also at six months out. So what did you notice over time?

[00:15:45] Dr. Hannah Reese: Yeah. So that was interesting and something we were currently exploring with an ongoing larger clinical trial looking at these same questions. So we saw that the gap between the two interventions narrowed over [00:16:00] time. So the gap was largest right at that post treatment measurement and then narrowed over time over one month and six month follow up.

And overall, the PRST group actually continued to improve. And then the MBIT group showed a little bit of loss of gains at one month. But then regained them and sort of held steady for the six months. And so we're really curious about that and what might be contributing to those patterns of results.

And for the M group, we wonder if, the eight weeks end and you kind of think, ah, okay, that's done. And you don't really sort of commit to continued ongoing regular practice, right? We think about meditation like exercise. You need to keep doing it. You can't just know how to do it. And you need to keep kind of working that muscle, that mental muscle.

 But then maybe when they came back for that one month check in and they thought, okay, all right, I need to sort of recommit to doing this. And those gains came [00:17:00] back. But the continued improvement in PRC is really interesting, something we'd like to understand more and it may be that some of the skills were introduced toward the second half of the eight weeks, and so they may have just taken more time to really take hold and produce some benefits for folks.

[00:17:20] Dr. Sarah Lidstone: So how do you see this intervention fitting into the current landscape of tic disorder treatment? Who might it be most appropriate for? What was quite interesting to me is, we know there's as we mentioned earlier, the comorbidity with anxiety disorders and many of these therapies themselves are used as first line for those conditions as well that are largely overlapping with tics.

And so we thought about who might do well in this type of intervention.

[00:17:44] Dr. Hannah Reese: Yeah, I mean, and that's really an empirical question that we're hoping to study. We have a larger clinical trial going on right now that will hopefully allow us to look at some of these mechanisms and moderators. But I do think what you're speaking to is important in that I [00:18:00] think MBIT has a promise to help people more globally where CBIT is very focused on tics and doesn't really address comorbid concerns. But as you said, most people with tics have some comorbid concerns. And I think that a lot of the ideas and practices in MBIT can be beneficial for those comorbid concerns as well.

[00:18:22] Dr. Sarah Lidstone: So I think one of the interesting strengths and that's very unique about this study Alan was, was your involvement as somebody who treats patients who have tic disorders but also has the lived experience of experiencing tics yourself and being involved from the conception and development of the program in a very non tokenistic way. Can you speak a little bit about, what that was like and how you hope that this will impact patients?

[00:18:49] Mr. Alan Brown: Well, I first have to say, I have to appreciate Hannah's stance on this because she didn't actually have to include me in this work. She's doing fine. Her work is strong. She knows what [00:19:00] she's doing. But when I first reached out she was so generous to say, I would love to hear about your experience.

And I think I stand to learn from someone who has tics and speaks mindfulness in this way. And that quickly turned into this collaboration. For me, my background is not in the medical field. My background is in the field of education and mindfulness education. And so sometimes I feel like a fish out of water, even in this podcast.

Ooh, what am I doing here? Right? Like this is not my background. And so often it is the, the way we talk about this feels weird to me, or, this is what it feels like in my body, and I think being able to speak to that in the room and, this is how I, obviously, I can't speak for everyone with tics.

But I do carry a certain life experience that I think when it's represented does make a difference. And obviously the work is deeply personal. It's very meaningful, but the stance or the approach in the field of being welcomed in [00:20:00] spaces where I think often people with tics and families, parents, right?

Often feel like I have to go to so many specialists and everyone's talking their own little part and no one's really understanding me or no one's really understanding my child. What is this holistic experience of a person who lives this day to day. I think having that as a more regular way to operate in this field, we only stand to gain from that.

[00:20:24] Dr. Sarah Lidstone: This is such an important study, an important pilot study that I really hope the results are replicated and extended and more robustly analyzed in a larger population.

But what a beautiful example of co design with patients who actually have these symptoms and can articulately like speak to what's happening in their body and really focusing on skill building that is what sustains improvement over time more so than medication probably does in many ways.

And so really impressive body of work. And thank you for joining us today.

[00:20:57] Mr. Alan Brown: Thank you.

[00:20:58] Dr. Hannah Reese: Thank you.