Our CAS Treatment Studies, With Dr. Julie Case

Full transcript

Dr. Case: We're back! When we cut out, Nicole was talking about how we quantify the children's improvement in terms of their gains in speech accuracy for the four-times-a-week study, but she was also sharing how amazing it is to see the confidence factor in these kids, and the swagger. I love how you talk about the swagger these kids have. Sorry about the technical difficulties, everyone; I had the camera turned the wrong way. Please let us know if you can't hear.

Nicole: It's real.

Dr. Case: It is a research protocol. It's the research, operationalized way of doing DTTC. But what's really amazing is that we do it in a way that the kids have fun. They play, they have fun.

Nicole: I think maybe I should give the quick overview, because I don't know what you all missed. I'm used to coming on from my phone at NYU, and what we didn't think through is that I'm at Hofstra and should have connected to the Hofstra Wi-Fi. So sorry about that; next time.

Study 1: four days a week at NYU

Nicole: Okay, so I am the lead SLP on what we call the four-day-a-week study at NYU, and it's ongoing. It's four days a week. The sessions are 45 minutes each, typically Monday through Thursday, at the same time each day. So if your time is Monday at 10, it's Tuesday, Wednesday, and Thursday at 10 as well. You don't have to have a consistent person bring them, and you don't even really need to stay. You can absolutely watch; we have an iPad. But you can also go down to Starbucks for a couple of minutes, take a breather, and come back up. That's absolutely okay.

It's eight weeks long. We do a bunch of testing beforehand, probably about five or six days of testing, and then there are post-treatment data collection points, and we ask that you commit to the whole thing in its entirety. There's a one-week post, where you come back one week after the eight weeks of treatment have finished, and then 16 weeks. We also offer what we call a commuter card, an $80 Visa gift card at the end of every week, or every four sessions, with the idea of offsetting some of your commuting costs.

We don't do this virtually, but we have had many, many out-of-state participants, and two from out of the country. We don't offer housing; it's up to you to find an Airbnb, or some have stayed with family and friends. However you can make that work, if it's feasible, that's absolutely okay. We just ask that you know ahead of time that you have to commit to coming back for these post-treatment data collection points.

Which is what I was telling Julie before: every kid is really doing well. We've been doing this for a few years now, and we've seen big improvement. But at these follow-up points, what we're seeing is not just retention of skill, but skill gain, and then confidence. The increased confidence, wanting to be communicative, wanting to attempt words that were previously challenging, has really been a game-changer for these families and these children.

Dr. Case: Yeah, it's exciting. For the four-times-a-week study, everything is at NYU, and I'm a part of this team, which is wonderful, to collaborate with them as well. What's great is just how much we really care for the kids. We support them, and we meet them where they're at, while doing this therapy in a research-reliable manner. And it's that swagger factor, going through this. What we're really excited about is having this chance to quantify the outcome, the effect of DTTC, on a larger scale such as this, and in younger children. The youngest kid so far, I think, was what, two and a half?

Nicole: A little older.

Dr. Case: A little bit. So in that two-and-a-half to three range.

Study 2: twice a week, with practice at home

Dr. Case: So this is one study we have going on, and Nicole, as she said, is the lead SLP. We have a couple of other wonderful clinicians as well who have been doing the therapy there. But we have another study, which in our recruitment materials we call the twice-a-week study. The first study, the four-times-a-week study, is funded by the National Institutes of Health. The two-times-a-week study is supported by the Once Upon a Time Foundation. And it's not technically called the twice-a-week study, just to be clear about our very scientific terminology. The title we've given it is the Let Me Help You Practice study, and it's meant for caregivers to be a part of the process.

The children come in twice a week. They can either go to NYU, where we have a clinician, Hannah, who does the therapy, or they come to Hofstra, where Kelly Sullivan is the therapist. Right here in this room is where the therapy happens. Kelly is the clinician and the project manager here.

What happens is the same parent comes. We realize it's a big ask. The same parent comes to every session and observes these twice-a-week sessions. There are two different groups, with differing degrees of involvement in each group. But then the parent goes home with their child. It doesn't have to be the parent; it can be a caregiver. They go home, and then they practice three times a week with their child.

The whole purpose of this study is that four times a week is a big commitment. When you look at the real world, and I know there are a bunch of clinicians watching, how many of you are able to make four times a week work in your schedule? I'm not sure if any parents or families have joined us as well. How many of you can make four times a week work, whether it's schedule-wise, clinician availability, or financial? Whatever it is, it's really hard to make that schedule work. So the whole purpose of this study is to see what happens when you partner with the parent. Does that support our treatment gains? What does that do to our treatment outcome? That's the purpose of that study: to partner up with the parents.

So in sum, we have two studies, and the NYU-Hofstra connection here. Did you know that Hofstra actually started as an annex to NYU?

Nicole: No.

Dr. Case: It did. So even though we're our own university now, we have deep connections between our universities. But just to note, we have two studies we're talking about. The four-times-a-week study takes place only at NYU. The twice-a-week study takes place at both Hofstra and NYU, and that's the one where the same parent or caregiver comes to every session and then practices at home with their child.

And since so many other people have joined us since then: our main reason for pulling this together is, yes, of course, to get the word out and increase our enrollment. We really want to connect with families, because it's a phenomenal opportunity to have therapy administered by highly trained clinicians, either on Long Island or in New York City. But we also feel like, with Apraxia Awareness Month coming, we want to increase awareness of the research opportunities out there, and have a discussion about research and all of the exciting, clinically relevant work being done right now.

How far CAS research has come

Dr. Case: I don't know, Nicole, I get really excited, because I finished grad school in 2007, and that's when the ASHA position paper came out. When I was taking the neurogenics class with Dr. Grigos, Maria Grigos, who is the principal investigator on both of these studies, we were still talking about what to even call it, and what the underlying cause is. And now we're at a point where we know what it's called, we have rising consensus about the features, and more and more research is coming out about how to assess CAS and how to treat it. But of course, just like anything else, the more we know, the more we realize we need to know. So we're just excited to be at this point, doing clinical research, and happy to have this time with everybody to talk about the studies we have going on.

Nicole: I personally love that we started using the lens of the principles of motor learning, thinking about speech as a motor task, which it clearly is, and looking at the literature and research on motor learning and applying it to speech production and speech therapy. These are the underpinnings of DTTC, and quite frankly the reason we're seeing success: we're coming at it from a different viewpoint, and the therapy is structured differently. As a clinician who's been practicing with this population for over two decades, it was very different for me in the beginning, right, Julie? A very, very different type of treatment. But doing this now for a couple of years, seeing the kids come back and seeing how much gain they're making, has just been incredible.

Making the shift

Dr. Case: Yeah. For anybody who might be newer, or who's just popped in: if you go to the NYU Motor Speech Lab Instagram page, Nicole does a masterful job of taking some of these key elements. We call it the paradigm shift.

Nicole: Right. Making the shift.

Dr. Case: And Nicole has this incredible series where she highlights the ways she's made the shift, that we've made the shift. What we both have in common is that we practiced as clinicians for many years. Then I was the treating clinician on one study, and Nicole's the treating clinician on this study, and we both had that experience of, "I thought I knew what I was doing," and then we started the study. I feel like the clinicians in another of our research studies, with clinicians around the country who are administering DTTC, have had the same experience. It's this amazing shift that happens. You think, "I know what I'm doing, this is great," and then all of a sudden you're like, "Oh, I never thought of it like that." I need to think about: Was I doing too many words at once? Was I giving too much feedback about the sounds rather than the movements? Was I breaking up syllables?

Oh, my biggest thing is my unnatural prosody. I don't know if it's coming through in this Instagram Live. No, it's not. I inflect my voice a lot. I have a high pitch, and when I'm excited my voice goes high, and all of us do that in therapy, right? We go, "Open!" And for DTTC, you try to use a more naturalistic model, to reflect how we actually produce speech. So it definitely is a humbling experience, but once you make the shift, there's no going back.

One of the clinicians from that study is watching. She's doing DTTC in this research-reliable manner, and she's saying she can see the difference before and after. I think once you make that shift, it's a little hard, because you have to break yourself apart a bit to understand where you need to change. So we always talk about recording yourself, watching yourself, and having a friend watch you, someone you feel comfortable with. Nicole had to watch a lot of my sessions, and I've watched a lot of Nicole's.

Nicole: A lot.

Dr. Case: That's like my Wednesday-night viewing instead of other shows. But it helps. It makes a difference, because you've got to figure out: Where am I not doing this movement-based approach? How do I need to shift? So I would just suggest checking out the making-the-shift slides Nicole has done, and finding a buddy and recording yourself. It's a transformational way to see where the holes are, and the ways you can move more toward this movement approach.

How to reach us

Nicole: And I do want to say also: even if you, or a client you have, or somebody you know can't start now, we would love to hear from you and put you in our care. We're constantly setting up for future cohorts. We already have kids slated for September, and possibly January at this point, for both of the studies. We're always planning ahead, so don't wait, reach out. And we should tell you how to reach out. You can email me; I'm the NYU four-day-a-week study: [email protected]. We're on Julie's account, the Case Speech Lab, right now, but you can also direct message either one of us on Instagram. And Julie, your email?

Dr. Case: You can either email me or, like Nicole said, just direct message us, and we'll get you in touch with the right people.

Nicole: We're also trying to put together helpful content for Apraxia Awareness Month, so if you have any questions, please email us or DM us, and we'll try to address them in our posts.

A viewer is asking: can children who participate in a different DTTC study still apply for your research? For mine, the R01 at NYU, the four-times-a-week study, no.

Dr. Case: But for the twice-a-week caregiver study at NYU and Hofstra, yes. Our favorite pipeline, when it's possible, is to start them at NYU in the four-day-a-week study and then have them do the two-day-a-week study afterward.

Nicole: If possible.

Dr. Case: If possible. And it's really nice, because the kids have a foundation, and then we partner with the parents afterward. So what do you think?

Nicole: I think we're good. It was really nice coming on. Thank you all for being here now, and those of you who are going to watch this in the future. And again, we're really happy to answer any questions you may have. Thank you so much, and Apraxia Awareness Month is coming. All right, bye, everybody. Take care.