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| James (0) | Welcome to another podcast from the HealthTech Research Centre in Brain and Spinal Injury, where I'm chatting to researchers and innovators and patients and carers, and really anybody who'll talk to me about brain injury and related topics. And I'm really pleased today to be joined by Stephanie Rossitt from the University of East Anglia. And Stephanie, you are a researcher in stroke, is that right? |
| Stephanie (0:33) | Yes, so I'm an Associate Professor here at the School of Psychology at UEA, and indeed I do research in stroke mostly. |
| James (0:42) | And the reason I wanted to pull you in is to chat about a new project, a new innovation called Eye focus. What is Eye focus trying to help with? |
| Stephanie (0:53) | So Eye focus is an app that we have been working on with our industry partner, Animorph, and it's trying to help people with brain injury recover their kind of attentional skills. So trying to help with them focussing on areas of their world that they're missing, basically, after having a brain injury in very simple terms. |
| James (1:18) | So there's this idea of spatial neglect, where we lose kind of awareness, knowledge, understanding of perhaps half the world. Is that a kind of good way to describe it? Or is that a bit too simplistic? |
| Stephanie (1:31) | No, no, that's a good way. So after a stroke or a brain injury, or sometimes in some forms of dementia as well, you can lose awareness of one side of space. So one side of your body, or the side of the world attached to that side of the body.
And that doesn't mean that you're blind. So it means that the brain is kind of not registering the information coming from that side. That can be visual information, it can be tactile information, it can be auditory information. So what happens is that people with this condition, they won't notice things when they're on their impaired sides, like objects, or even people, or sometimes in severe cases, even their own parts of the body, so their arms and so on. The condition is quite severe, as you can imagine, because it significantly impairs all the other forms of rehabilitation, they're trying to get people moving, for example. So getting people to use their arms or to learn to walk again, can be quite tricky if you have this condition, because you'll tend to bump into things on your impaired side. It can also be dangerous when you're walking around, you know, and missing cars coming from that side. We have patients who've reported, like, accidents like this. So it's quite a severe condition that is associated with disability and long-term kind of consequences. |
| James (3:00) | Yeah, so we're used to, I think, most people will be used to thinking that when you have a stroke, you get sort of one side weakness, and that's on the opposite side of the body to where the stroke is in the brain, usually. But what you're saying is, it's not just that perhaps you can't move your arm, but you don't even really know you've got an arm? |
| Stephanie (3:19) | Yes, it could be that. So some patients will not even know that their arm is there. They might know they have two arms, but they don't know where it is.
Or if they might not sit, they might say, that's not my arm. That's quite rare, that kind of presentation. But the patients might not be so comfortable moving on that side of space, they might not see objects so well, like, you know, their medicine, or when they're eating, they might only eat outside of the plate. So it tends to be on the same side, the problem, where they also have impaired movement. |
| James (3:54) | Yeah, interesting. So I first read about this thing, actually, in a book by Oliver Sacks, many years ago, in The Man Who Mistook His Wife for a Hat. There's a very brief story about somebody who clearly had this, and she would move herself in order to sort of make that bit of lost world become apparent and have that attention.
And is that something that people do? They're trying to accommodate for this by, I don't know, swivelling around in a chair or changing the way they're standing or sitting to try and compensate? |
| Stephanie (4:23) | Unfortunately, not many of these compensation strategies work, because you not only lose awareness of that side of space, what we see commonly in these patients is that they are not even aware they've lost the awareness. So this is called anosagnosia for those who want to look it up. But so it's, they're not aware at all that they're missing half of the world.
So when something pops up, there actually tells us it's really frightening. I didn't even realise it was there. And then it's right there. So it's quite a significant condition, as you can imagine. |
| James (5:39) | Yeah, we just need to sort of give listeners a moment to think about this, because it's very hard to kind of conceptualise the idea. I wear an eye patch, that means that I have very poor vision on my right-hand side, but I can see stuff there. And if I want to look at something, I will just turn my head and have a look at it, because I'm aware that that side of the world, that space does exist.
I'm just not quite sure what's going on in there at the moment. But for these people, there's just no awareness, really, that there could possibly be anything there, because their brain is just ignoring that space. |
| Stephanie (6:12) | Yes. So it could either be ignoring, or some of the theories about this condition also say that the spared side of the brain, so the brain has two hemispheres, so two parts that are almost equal, it's like a coffee. So the spared side is basically taking over everything.
So you're kind of stuck with your good side, and there's absolutely no space to process anything on the other side. It's, yeah, definitely, it's quite a complicated situation. And in terms of the therapies available, they try to work with the patient, to train the patient to compensate for this, to remind them to turn their head, and so on. But the clinical trials that have tested these kind of techniques have shown not really strong effects of this. So, for example, if you train a patient in reading, where you put a marker on their left side, say, their impaired side, and they have to find a big yellow sticker before they start reading, they might improve the reading, but the improvement will be very short term, and they won't carry over to other things that are also important to the person, like, you know, making a cup of tea or so on. So the effects are quite limited in the studies. |
| James (7:32) | And how common is this? Is it something that lots of people who have a stroke will have some sort of degree of impairment like this? |
| Stephanie (7:40) | The kind of numbers we know about, it's about one in three stroke survivors will have it in the first three months post-stroke. Some people, they might recover spontaneously, but the condition is quite long lasting, and you'll find of those people who had, you know, neglect soon after stroke, about a third will also have neglect one year post-stroke. In fact, in my lab, we've seen people 10 years post-stroke who still have this condition, and their unpaid carers, family members, for example, have changed living rooms so that the TV is on the impaired side to force the person to kind of look at the TV, or they put their medication on their impaired side, and they get very frustrated that the person still every morning asks, where are my pills?
Where is the TV? So it's quite a significant condition. |
| James (8:40) | Yeah, so really quite common, and we can imagine how debilitating it must be. And presumably, it makes it harder for those people to do the normal rehabilitation, like the physical exercises and things, and the occupational things like making tea and stuff that would encourage people to do in their recovery. That must be much harder if you've got this kind of lack of a part of the world. |
| Stephanie (9:03) | Yes, absolutely. So the patient and public groups tell us, you know, they find it really hard to do even simple things, you know, when they go home, like read a book, which is something they would enjoy doing before, watching TV, or, you know, caring for themselves can be quite difficult. So it can affect dressing, cleaning yourself, brushing your hair, you can imagine if you're a lady putting makeup, you only put on one side of the face.
So it's, it's really an impactful condition. And it has a knock on effect on everything else. So you tend to have more severe disability and stay longer in hospital as well, if you have this condition, because you're less mobile, you engage less with physiotherapy, you seem to respond less to physiotherapy, and so on. |
| James (9:53) | So clearly, there's a need to do something, which is where your latest project comes in, I guess. So how does Eye focus work? How is it different from just sort of reminding people that there's something over there that you need to pay attention to? |
| Stephanie (10:06) | Eye focus is based on some studies that have been published in Germany, that show that if you show people moving things on a screen, like really simple shapes, like circles, and so on, and you ask them to pick one of those shapes and follow them across the screen, at different speeds, different quantities, this kind of triggers a kind of almost unconscious mechanism of attention, and the patient starts to improve. So it's a bit like when you're sitting on a train, right?
And your train stopped, but I don't know if you notice, when you look out of the window, there's another train passing by, and your eyes move very quickly, you cannot stop your eyes from following this. So Eye focus is making use of these mechanisms, which are kind of like vestibular mechanisms, that trigger these automated eye movements, but also training people to slowly follow things across a screen. The way the app works is that it's personalised to the person's ability, so the individual. So it provides that level of therapy that can, you know, grow as you get better, which, you know, other therapies don't provide. So it will start with easy things to follow, and then it builds up as the person progresses, so we have about 15 levels of difficulty. So there's different quantities, different speeds, and so on, to kind of engage the person on their rehabilitation. |
| James (11:45) | Okay, and can people do this themselves? Do they need to come into clinic to do this with a therapist, or can they sit at home and just do half an hour when they feel like it? |
| Stephanie (11:53) | Yes, so the way we've set it up at the moment is on a tablet, so it's portable. We do need a little bit of peripheral things at home, so something to hold the tablet in front of the person, and what we're doing, which is very innovative in the EyeFocus, is that we're using the webcam on the tablet to track the person's eye movements, so check that they're following the things on the screen, and this gives them also reinforcement and motivation to keep going and points, and also allows us to check the person can do it. But the idea is to build a therapy that they could start in hospital and then carry over to the home if they wanted to. At the moment, we've developed the therapy for the last few years with people who have been discharged that were home, and we've done a series of kind of usability studies in the home with chronic stroke survivors with neglect. What we're doing currently with funding from an NIHR FAST is to actually for the first time do a feasibility study and usability study in the clinic with the more severe neglect patients, so we want to make this up kind of like bulletproof in essence, so that it can work for everyone, regardless of the level of disability or level of severity they have.
So we'll know for sure if we can do it in the clinic with those more severe patients in April or so next year. |
| James (13:28) | Grand, so we should start to get some results, and is there good evidence that this does then apply to other things? There's a risk with some of these apps, isn't it, you get fantastic at doing that, but doesn't actually make any difference and impact on your everyday life, so if people learn how to follow these things, does that generally improve their attention to the impaired side? |
| Stephanie (13:50) | That's a really important point, and the proof of concept studies that were published, they had small samples, James, so you know, I have to be careful with what I say here, but they did show some promising effects. So when a therapist was, the way the therapy was delivered in these hospitals in Germany is that the therapist would administer this exercise on a laptop, and they would monitor the patient, they would stay with the patient for about an hour each day and check that they were moving their eyes and not their head, so we're training them to move their eyes here, and they found that doing this improved the neglect not only on the traditional, you know, paper and pencil kind of tests, which is like a Find Wally kind of test, but also on more like functional tests, where they have like a tray, and they have to find all the objects on this tray and put them in a basket, and interestingly, some patients also improved in their awareness of the condition doing this therapy. Obviously, being a clinical trialist on this area, I would say that's great promising findings, so what we need to do is once we have the data for the app, and we've made the app, adapted it so it can be done for the more severe people in the clinic, we then need to do a large efficacy study where we really measure how much is it transferring to other things in people's lives, you know. |
| James (15:21) | Yeah, but some encouraging early results there. |
| Stephanie (15:25) | Yes, some encouraging early results, and that's why we picked this therapy first to put it on the tablet. |
| James (15:31) | Yeah, exciting. So you're running this project till early next year, and then I guess this larger trial, so are we thinking perhaps in five or six years' time we might have something which is out there and proven to reduce this problem of neglect? |
| Stephanie (15:48) | That would be great, yeah. Our plan is to apply for a larger funding grant, so fingers crossed we'll be lucky and get some money to do a larger trial, and then have the results, you know, three to four years' time about the efficacy of the therapy. |
| James (16:06) | That's good, and if there are people listening to this podcast who have this neglect, or perhaps they're caring for somebody who has, are there things that they could do today, perhaps building on some of the learning that you've got, to try to improve things for themselves, or is it just a kind of wait and see for a minute? |
| Stephanie (16:24) | You know, I'm always in favour of doing something, right, so if people want to do something they must be given the opportunity to do something. The NICE guidelines have some recommendations which admittedly, you know, are not evidence-based because there is no evidence for their efficacy, but at least there are some strategies there, so things like, you know, queuing the person with markers on a piece of paper if they want to be able to read, so the positioning thing so they can, you know, see them, and it might be a gradual change, not just put the TV on their impaired side, but do it slowly so the person can follow. Just try different strategies really, that could help, but these are simple things that you can do at home, that might help. |
| James (17:19) | And worth a try, I guess, right, we're getting the brain to kind of work, and that's what it needs to do. |
| Stephanie (17:26) | Exactly, so things like, you know, crosswords and, you know, paper exercises, you can buy these magazines when you go on holiday with the |
| James (17:37) | word searches on pages and pages and things, yeah, |
| Stephanie (17:41) | things like that, you know, if the person is able to do and a little bit every day, you have to be careful with fatigue as well, so that's one thing to bear in mind, is that people with neglect also suffer from fatigue as any, with a brain injury, so not push them too hard. |
| James (18:00) | That's a common theme across all of these brain injury conversations that we have, there's some great stuff out there, but just take your time, yeah, to kind of fatigue, I know myself that if I push anything too hard, then I'm, that's me for two days, right, so. |
| Stephanie (18:16) | Yes, absolutely. |
| James (18:18) | Take it slow and steady, but it's nice that there is some hope, there must be thousands and thousands of people, if you say one in three, and we know that the occurrence of stroke is huge across the country, nay the world, so hopefully some recovery and improvement for these people, which will help them engage then with other therapies to kind of overcome impairments from their stroke. Well, Stephanie, thank you ever so much for your time and having a chat with me about this. Good luck with your project, we look forward to finding out the results of this first stage of the trial and then hearing more about stuff in the future.
Thanks very much. |
| Stephanie (18:53) | Thanks for having me. |
| James (18:55) | That was a podcast from the NIHR HealthTech Research Centre in Brain and Spinal Injury. Check out more episodes on our feed and stay in touch. Thanks very much. |
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