SCI Care: What Really Matters
SCI Care: What Really Matters
Why sleep deserves more attention in SCI care
The International Spinal Cord Injury Survey (InSCI) found that sleep problems rank among the top six most common and debilitating health issues for people with SCI — and are the second most likely to go untreated.
While rehabilitation centres routinely manage issues like pain, spasticity, and bladder, bowel, and sexual dysfunction, sleep is often overlooked.
Risk screening for sleep disorders is inconsistent and typically ad-hoc, and most centres refer suspected cases to sleep specialists for assessment and ongoing management.
However, recent research shows it is feasible for rehabilitation centres to manage common, uncomplicated sleep disorders "in-house". In this podcast, we explore why sleep deserves more attention in SCI care— and how rehabilitation centres can take a more active approach.
Speakers
Marnie Graco, PhD
Implementation Scientist | Institute for Breathing and Sleep, Austin Health, Melbourne, Australia
Nancy Gray MND Research Post-Doctoral Fellow (MNDRA)
Senior Fellow | Melbourne School of Health Sciences, The University of Melbourne, Australia
Hardeep Singh Kainth, MD, FAAPMR, Dip. SCI Medicine
Associate Clinical Professor, Division of Physical Medicine & Rehabilitation, Department of Medicine, University of Alberta, Edmonton, Canada
Medical Lead, Spinal Cord Injury Rehabilitation, Edmonton, Canada
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
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The SCI Care: What Really Matters podcast aims to provide valuable insights and the most up-to-date information for those providing care to people with spinal cord injury (SCI) worldwide. The vision of the International Spinal Cord Society (ISCoS) is to "facilitate healthy and inclusive lives for people with spinal cord injury or dysfunction globally".
Contact us directly with any questions or comments at iscos@associationsltd.co.uk
So welcome to this ISCOS Spinal Cord Injury Care what Really Matters podcast. In this episode, we will be discussing why sleep deserves more attention in spinal cord injury care. My name is Marnie Graco and I'm joined today by my co-host, hardeep Kainth. Hardeep, do you want to introduce yourself, and then I'll do the same? My name is Hararnie Graco and I'm joined today by my co-host, hadeep Kainth. Hadeep, do you want to introduce yourself, and then I'll do the same.
Speaker 2:My name is Hadeep Kainth. I'm a spinal cord injury rehab physician, an associate clinical professor at the University of Alberta and the medical lead for the spinal cord injury rehabilitation program in Edmonton, Alberta in Canada. I'm super passionate about anything regarding improving spinal cord injury care and best practice.
Speaker 1:Great thanks. So my name is Marnie Greco. As I said before, I'm a physiotherapist by background. I work in Melbourne, australia, at the Institute for Breathing and Sleep and Melbourne University, but my expertise is not really in physiotherapy or clinical management of people with spinal cord injury. It's in implementation science. So that's really the study of how we get evidence into clinical practice, and my special interest area in this field is around the management of sleep and breathing disorders in spinal cord injury and motor neuron disease. So my PhD was around the clinical management of sleep apnea in spinal cord injury and we'll talk a little bit about that later in the podcast. But the other thing to say before we go on is that neither Hadeep nor I are respiratory experts. So Hadeep's obviously a spinal cord injury clinical expert, but we're not going to get too deep into the respiratory management of spinal cord injury in this podcast.
Speaker 2:Yeah, that's great Monarnie. I think we'll discuss kind of an overview of what we want from the podcast first. I think we'll split it into two sections. The first will be kind of how sleep impacts spinal cord injury, what we see as the common problems with sleep and SCI, and then the second part will be leaning on Marnie's expertise and implementation science and how can we change current practice or give some examples of how we can address sleep in spinal cord injury rehab centers and how can we be a bit more involved and have a few ideas bounce around about how we can put this at the forefront of our thinking during spinal cord injury rehab. So I think that takes us to the first section then. So, moni, how big of a problem is sleep for people with spinal cord injury?
Speaker 1:Yeah, so it is a pretty big problem.
Speaker 1:We've known for quite some time now that people with spinal cord injury have substantially worse sleep than the general population and even in other neurological populations.
Speaker 1:So there's a number of studies that have compared sleep quality compared to the general population and all of them have consistently shown that people with spinal cord injury have significantly worse sleep quality. I'll talk a little bit about a study that we published in Australia a couple of years ago. So this was from the International Spinal Cord Injury Survey, where we had over 1500 Australians living in the community with spinal cord injury answer. The survey and uniquely our survey was the only one, I believe, that has included a validated questionnaire to assess sleep quality. So we had the Pittsburgh Sleep Quality Index, which was in addition to all of the normal INSKEY questions, and what we showed was that about 70% of those who responded scored in their PISC at a threshold that meant that they had indicated poor sleep quality. So this is double what is reported from similar studies in the general population and one and a half times more than a study that's used the PISC in moderate to severe traumatic brain injury. So we really are dealing with quite a large problem in this population.
Speaker 2:Amada, just a quick question on that Is that for acute or is that chronic that population that you looked at?
Speaker 1:Yeah, so that was chronic. So these were people at home living in the community, so generally in Australia that would be after at least one year post sort of injury.
Speaker 2:But we do know from alternate studies that it is a significant problem quite acutely after spinal cord injury, right Right up until like three or four weeks. I've seen that it's being proven that up to 60 to 70% of our spinal cord patients do have sleep dysfunction or sleep disordered breathing right at that point, Yep.
Speaker 1:Absolutely so.
Speaker 1:Yes, thank you, hadi, because that's so.
Speaker 1:Actually my PhD supervisor and current mentor, so David Berlowitz, his PhD, which was, you know, a couple of decades ago now, showed, I think, was the first to show that spinal cord injury, high spinal cord injury, actually causes sleep disordered breathing.
Speaker 1:And so within two weeks of having the spinal cord injury, the prevalence of sleep disordered breathing in that population was over 80% and dropped down to about, I think oh no, 80% at three months, I beg your pardon and drops down to about 60% at 12 months. So, and then it goes back up again because we think it's a bimodal disease where, as people age and they put on weight, they then get kind of back up to about 80%. So sleep disordered breathing is absolutely hugely prevalent. And, yes, sleep is a problem in rehab centers as well, and not just sleep disordered breathing, but you also think about the sleep environment that people are sleeping in, that you know it's quite disruptive with, you know, obs and nurses, and you know, turning you, you would know more about this than me how deep in terms of that kind of environment I think that's the point is the bimodal distribution of this, the chronic, the acute, say.
Speaker 2:If we just talk about the chronic first, then obviously this is going to affect the quality of life, the participation, the ability to employ these people, right, yeah, get into, get into employment. And then we already know that cardiometabolic risk factors for spinal cord injured patients is quite significant and levels of obesity are quite, quite high. So now we are factoring in the fact that sleep is going to be affecting, affecting that as well, as sleep apnea has a real negative impact on cardiac health that we all know about. So these are kind of the chronic implementation of the chronic issues with sleep, right. And then if we think about the subacute, if we talk about inpatient rehab, then it comes down to participation, right, absolutely, I always think about that.
Speaker 2:One question is what is the role of inpatient rehab? And in majority of the places, we want people to participate and get the most out of inpatient rehab that in terms of function gain and to learn about their spinal cord injuries. If we're not putting them in a position to do that and one of the factors is poor sleep that's contributing to daytime sleepiness, poor cognition, which leads to poor carryover, then not only will our length of stay in inpatient rehab be longer, but they're also the actual patients, the people with SCI, not getting the most out of that experience, which is which is going to really be the foundation for them for the rest of their lives, right?
Speaker 1:yeah, absolutely, and you know, I think that the science is going to really be the foundation for them for the rest of their lives, right? Yeah, absolutely. And you know, I think that the science is starting to catch up with what people like you have known clinically for a long time. You know, which is exactly what you just said it's really hard to participate in rehab and to participate in life when you don't get a good night's sleep. We all know that. But there is now studies showing that participation in rehab is strongly lower.
Speaker 1:Participation in rehab is strongly associated with poor sleep quality and also participation in just kind of general community life as well. And we've also that same paper that I talked about before about the Australians living in the community with poor sleep quality. We also showed a really strong relationship between employment outcomes and sleep quality. So those who had poor sleep quality were significantly less likely to be working than those who didn't. So you know, this is all stuff that we kind of know exactly. It makes sense, but there is now studies that are proving what we've known. And the other thing is that mental health and emotional well-being you know there's a lot of research out there now linking different sleep disorders and general just sleep quality to that, and that's in the general population as well. Right.
Speaker 2:And I think that that is a really good segue into the rates of anxiety and depression in spinal cord patients, especially new acute spinal cord patients, is quite high it's very, very high, right. And the spinal cord patients is quite high it's very, very high, right. And the adjustment injury is quite significant. So if we're already dealing with rates of anxiety and depression and then on top of that then we're factoring in poor sleep, it's just fueling this already quite significant issue that's going on. And then if we don't, if we leave it and forget about it and pretend like it's a small problem, then that's just going to get worse and worse and worse, right, and if no one ever looks at it, then that's going to impact everything in their lives.
Speaker 1:Yeah, absolutely, and there's really good data now in the general population that there's a very strong bi-directional relationship between mental health and sleep. So obviously, you know, if you sleep badly, you know it kind of makes sense that you would, you know, then be more predisposed to mental health disorders. But equally, mental health disorders impact sleep. So it's that bi-directional kind of thing. And it's the same with pain as well. So if we have pain and spasm we don't sleep as well, but if we don't sleep then our pain is also worse.
Speaker 2:So we really need to think about these things. Yeah, we see that all the time as clinicians. Is this if, if we see that our our patients are not sleeping, whether that's due to neuropathic pain or spasticity or noxuria, that just fuels these conditions to make them worse, particularly the the the asthicity and the neuropathic pain, you just get into a loop. Poor sleep means worse, and then you're just constantly trying to add medications and then that's its own problem, because those medications themselves can cause cognitive decline and sleeping during the day. So it's this big cycle that we need to look at the root cause and the root cause of some of these things.
Speaker 2:We're not saying everything is going to get solved with looking at sleep, but multiple factors that we're looking at. For spinal cord patients would improve if we looked at their sleep and if sleep improved. I think that's the main message that we want to get across here is that it is not something that can be looked at later on. It's not just a community problem. This is a a problem that should be looked at and given importance as early as possible. Right, just as we give importance to weaning people from a ventilator and making sure they're appropriately oxygenated. Then, all of a sudden, everyone forgets you've weaned from a ventilator that everyone forgets about their oxygenation, right? So I think that that's a big factor for us.
Speaker 1:Yeah, and I think too, as you've highlighted, you know thinking about this as a holistic problem and you know, and really taking it from that person's perspective, because you know so many things, as you've just said, can feed into poor sleep from you know your medication, your pain, your mental health, the sleeping position, the sleep environment, etc. So you know, having that holistic view and really trying to, as you say, get to that root cause of what that individual person's problem is. So, yeah, I mean one thing I just wanted to add that perhaps we haven't touched on, in terms of the factors that impact sleep is, interestingly, financial problems. So a couple of big surveys have found that people who are experiencing financial hardship also report really significant difficulties with their sleep. So I mean, these are just associations, whether that's, you know, the stress, or whether it's something about their sleep environment. You know, obviously, again, it's about getting to the root cause of that person's problem and trying to do what you can as clinicians to address that.
Speaker 2:Post spinal cord injury. The financial burden is significant, so we're not helping here.
Speaker 1:No, exactly. And then, as you say before, if you're having trouble getting back to work because you're so sleepy again, it's just that vicious cycle having trouble getting back to work because you're so sleepy again.
Speaker 2:It's just that vicious cycle. So I think that leads us on to kind of what are the most common sleep disorders that we're seeing in spinal cord injury. So, Marnie, if you could tell us from your research and from what you know, tell us a few of those.
Speaker 1:Yeah, sure. So there's four main sleep disorders that people with spinal cord injury experience at a much higher level than the general population. I'm only going to touch on three of them, because they are not my expertise and there's not a huge amount of research on these ones, and then I will talk in more detail about the one that I know a lot more about and is the most prevalent, which is sleep disordered breathing. But those first three are periodic limb movements. Those first three are periodic limb movements, so these are periodic episodes of repetitive and stereotyped limb movements, typically in the legs, and they'll typically originate in the big toe and the ankle. That can disrupt sleep, but they perhaps don't disrupt sleep as much as some of the other sleep disorders in spinal cord injury. However, they are very common. There's a few prevalent studies, including one from our group a few years back that estimated about 60% of people with spinal cord injury have periodic limb movements.
Speaker 2:It's an interesting one, the periodic limb barrier, because in my experience whenever we see someone with limb movements at night, it's generally spasticity, Generally that they've had a fatiguing day and they're tired and maybe sleep initiation or they get woken up by sleep is from spasticity. Not saying that. We haven't had patients where we've tried the usual antispasmodics. They have not worked. Now all of a sudden we think this may be some type of restless leg type syndrome and we try different medications.
Speaker 2:One of the theories, I think, is why we don't pick it up as much is because one of the treatments for this is gabapentin and pregabalin those types of medications as first line, and the majority of our patients are on those types of medication for neuropathic pain. So we might just be hiding some of these symptoms from coming out. Right, or the spasticity may be more significant, and so we all concentrate on that, but I think that's maybe why we don't see it as much in clinical practice. Right, or the spasticity may be more significant, and so we all concentrate on that, but it's, I think that's maybe why we don't see it as much in in clinical practice yeah, right, that's interesting.
Speaker 1:well, that, yeah. And then the next one is, uh, clinic, uh sorry, circadian rhythm sleep-wake disorders. Um, so people with cervical spinal cord injuries or tetraplegic complete spinal cord injury all have a disruption to their melatonin pathway, because the melatonin pathway actually goes through the cervical cord and so these people have what has been described as permanent jet lag with no circulating melatonin, and it is known to delay sleep onset and probably also the onset of REM sleep, which is that really important sleep that you would get? There are a couple of small randomized control trials of treating this with supplemental melatonin which you can just get over the counter. It's been shown to be safe. It may improve subjective sleep, but I think these studies are underpowered and much more research is needed in this area. So don't know what your experience how deep is in in treating this?
Speaker 2:we do the same thing when, when sleep becomes an issue I think melatonin is something that we use first, but it's often used incorrectly is what we find is that people try to take the melatonin and expect it to work right away, and there always needs to be that kind of two-hour window beforehand of taking it. Um, and then obviously, and along with this, the melatonin issue, you've got like the vasopressin issue as well. That affects the circadian rhythm cycle as well, and so we all should end up looking at that. When someone's got noxuria and if we can't do anything about it, they're put on like a vasopressin analog, like desmopressin, that will help with that. So, yeah, there's definitely this feeling that circadian rhythm obviously is disrupted, knowing that multiple hormones post-spinal cord injury have been affected.
Speaker 1:And temperature as well. I think temperature is disrupted as well. Temperature regulation is part of that circadian rhythm.
Speaker 2:There's a couple of temperature regulation control centers, one in the spine and one in the brain. So even lower level injuries, temperature regulation is quite significantly affected and we get kind of this pocliothermia, where people can't regulate their body temperature with the ambient environment. So, yeah, there's definitely these centers that all interact and sleep is definitely one of those things that gets affected.
Speaker 1:Yeah, okay, the next one's insomnia disorder. So this is defined as difficulty getting to sleep or remaining asleep for at least three months. But the diagnosis of insomnia disorder is quite complicated in spinal cord injury because it usually has to be made in the absence of other sleep disorders and, as we've heard, most people with spinal cord injury have a sleep disorder. So we don't really know what the true prevalence of insomnia disorder is in spinal cord injury. There was one study done in the US that's estimated that nearly 60% of people have symptoms of insomnia disorder, but again it wasn't clear whether they had other sleep disorders and that those symptoms could be coming from those. So there is limited evidence really around this and I think the usual treatment is probably what's usually done in the general population, which is things like CBT cognitive behavioral therapy for insomnia, but I don't know of any trials in this area.
Speaker 2:Yeah, this is such a difficult one to put into real practice, because if we have people that are struggling to fall asleep, it's generally because of something else, just like we've said. It's because of nerve pain, or it's because of spasticity, right, or it's because of frequent urination. There's always something else driving it, or it could be adjustment and it could be the anxiety, pcsd type symptoms. There's always, there's multiple layers to this. It's very difficult to peel those all back.
Speaker 2:So when we think about treatment, it's about treating all those individual things. Try and get them a good night's rest so we don't precipitate the same problem that we've been talking about, and then, ultimately, they just get put on some medications to help them sleep, and, in essence, some of the medications that we use to treat nerve pain and spasticity also can be sedating, and so it's like a two-for-one at some point where we're like, okay, we, we, we are struggling here. Uh, we can't, um, we can't peel back every single layer, and so we just have to get them a good night's rest, right I think that's what we'll get left with as clinicians yeah, yeah, okay.
Speaker 1:And then the last one, which is um, sleep disordered breathing, and we've alluded to this already before. So this is um. This sleep disordered breathing is an umbrella term that kind of describes three main sleep disorders that affect the respiratory system during sleep. So there's two types of sleep apnea generally obstructive sleep apnea and central sleep apnea. So both of them have the same thing in common is in that they are characterized by repetitive cessation of breathing throughout the night. So your breathing will stop for periods of 10 seconds or longer, and then your oxygen saturations in your blood will drop and then it will send a message to your brain to have a little mini wake up. Most of the time you're not even aware of these wake ups. You'll start breathing again and then the same thing will happen over and over and over again during the night. So you get a pretty awful night's sleep. As you can imagine, the difference between obstructive and central sleep apnea is the cause of these breathing cessations. So in obstructive sleep apnea we have the cause of the cessation of breathing is that our throat will collapse, so there's actually a block that the air can't get through because our upper airway has collapsed, and then we'll have these mini wake-ups and our muscles will be triggered to sort of open up again and start breathing. Central sleep apnea, on the other hand, there is no obstruction of the upper airway. The upper airway is open, but there's a reduction in the mediation from the brain to breathe. So those signals from the brain down to the respiratory muscles are not getting through. In reality they often happen together.
Speaker 1:But we have found so there's been a little bit of confusion in the literature around what is most prevalent in spinal cord injury obstructive sleep apnea or central sleep apnea.
Speaker 1:We know that sleep disorder breathing is highly, highly prevalent. But as to sort of the I guess, the contribution of each of obstructive and central sleep apnea, we now know that it's majority obstructive sleep apnea. So we studied I think we looked at over 600 full sleep studies in people with tetraplegia and showed that the prevalence of central sleep apnea on its own was only 4%. The prevalence of obstructive sleep apnea is 80%. So we're talking about a much more prevalent condition with obstructive sleep apnea. We're going to talk a bit later about some of the treatment and management of sleep apnea, but I'll just move on. The other type of sleep disordered breathing is sleep-related hypoventilation. So this is caused by muscle weakness, respiratory muscle weakness, so it's an under-breathing during sleep which causes a buildup of carbon dioxide in the blood and this really needs to be treated with bi-level positive airway pressure, which we'll talk about down the track, to help move that air through.
Speaker 2:Probably we'll move on now to kind of the second part of our talk, which is really about how. Now to kind of the second part of our talk, which is really about how. So now we know that it's such a prevalent and such an important issue for people with spinal cord injury, how then do we take it more seriously in rehab centers? So we've got people now that have gone through the acute care piece of their spinal cord injury recovery acute care piece of their spinal cord injury recovery and now they find themselves in a spinal cord injury rehab center. This is supposed to be the place where we are supposed to be the best at spinal cord injury care and we're supposed to look at everything and teach people and give them the tools that they need to be successful for the future. So I think that this is where we want to look at. What have you surveyed, I think, Mani, in terms of what rehab centres are doing and how are they approaching this issue?
Speaker 1:Yeah. So I guess I just want to talk a little bit, if it's okay, hadeep, about the role of sleep centres in managing sleep, role of sleep centers in managing sleep, and just to highlight that the International Spinal Cord Injury Survey, which has been done now in over 21 countries in the world, has really shown us how important sleep is to people with spinal cord injury relative to their other common secondary conditions. So you know, in Australia, for example, sleep was ranked the fourth most prevalent problem for people with spinal cord injury, behind pain, sexual dysfunction and spasm, and it was also the second most likely secondary health problem to go untreated, behind only sexual dysfunction. So you know, here people were telling us this is a big problem for us and we're not getting treatment for it. And this was, you know, pretty much repeated when the INSKE organization or group of people they compiled all of the data from the 21 countries so they've had over 11,000 people with spinal cord injury globally and they looked at these kind of secondary health conditions and in the world sleep ranked number six. So it was behind pain, spasms, sexual dysfunction, bowel dysfunction and contractures.
Speaker 1:And we know anecdotally that many you know spinal cord injury rehab centers and you know this way more than me, manage many of these other secondary health complications as kind of primary care, and they'll, you know, only refer to specialists in urology, for example, when it's beyond maybe the expertise of that. You know it's a little bit more complicated but anecdotally we also know that not very many spinal cord injuries have that same approach to sleep and this has been reflected in the WHO released a document a year or two ago which is the Package of Interventions for Spinal Cord Injury Rehab Care, which provides really comprehensive recommendations for active management of many secondary health complications. So if you go through that document, there's a list of recommendations around assessments and treatments for secondary complications like pain, spasticity, bladder and bowel dysfunction, sexual dysfunction, contractures, pressure ulcers. The list goes on and on and then you get to sleep and sleep has one tiny mention which is simply to refer the patient to a sleep specialist for assessment of sleep apnea.
Speaker 2:And that in itself, just like you're saying, we have these algorithms that are built for bowel and bladder. Only as a last resort do we ever really send out, and usually just for procedures like it will send to a urologist for a cystoscopy or to get a study done or for bladder botox or something like that, whereas sleep is one of these things that has definitely been underlooked in a lot of the, a lot of the the these algorithms that are built for spinal cord injury care for For sure, yeah, yeah, and I guess I just want to make it clear that I'm not criticising this WHO document, which is a really amazing resource for people.
Speaker 1:It's just reflecting what usual care is in spinal cord injury. But I guess you know what we want to get. You know, our message here is that we think that spinal cord injury can pick this one up, too, to a degree and do it as you know. Our message here is that we think that spinal cord injury can pick this one up, too, to a degree and do it as and you know be more active in their management of sleep problems.
Speaker 2:The environment is also key to that, as we'll talk about, because some of the interventions that we'll go into are difficult for people to do in the community. So what we're also saying is you're in a space in the community. So what we're also saying is you, you're in a space. If we go back to the uh, the rehab centers, um, taking this on, you're now in a space where this could be taken on. You have the expertise to do it. You have a team, irlq, that can assess it. You can also take care of all of these other secondary complications that could be contributing to the poor sleep. So you can pull it all together to improve that, without kind of just pushing it out into the community, where it's a lot harder to do, as we know right. We know it's harder for people to do these types of sleep studies and get the data that they need in the community.
Speaker 1:Because they're so busy managing everything else right, but you know to add this to them is another burden. But I think you hit the nail on the head there when you talked about this. Sleep lends itself beautifully to multidisciplinary management. You know you can imagine that. You know the whole team can get involved in sleep management from allied health, nursing and medical. All have a role to play.
Speaker 1:But yeah, so I guess my PhD was in the area of sleep apnea and rehab management of sleep apnea and a lot of the research I've done since then as well. But in my PhD I did this one study where I interviewed doctors from rehab, doctors from all around the world around how they manage sleep apnea in their patients and found out that that most common care pathway, like in the WHO document, was referral to a sleep specialist for assessment and treatment of sleep apnea. However, many of them also told me that they had poor access to a sleep or a respiratory physician. You know they were too far away. They, you know, had long waiting lists or whatever it might be. And then in another study where I interviewed people living with spinal cord injury, they also told me they don't want to go to a sleep lab to have an overnight sleep study, that that would just be a disruption to their daily routines. It would be too much for them and many of these places too can't actually cater for the needs of people with a spinal cord injury, so they won't accept someone in their wheelchair or they require that person to come with an overnight carer. So there's all these barriers. So we're kind of in a situation where the predominant care model is also really really difficult to access.
Speaker 1:And I met three in my travels, met three spinal rehab physicians who had overcome this problem of poor access by just developing their own in-house model of care. So they trained themselves and a small team and their multidisciplinary you know whether it be nurses, respiratory therapists, physiotherapists trained them up to be able to do ambulatory assessments of sleep apnea followed by treatment initiation with positive airway pressure on the ward. And they were doing, they were amazing services. They screened everyone for sleep disorder and they got people on treatment. And so you know, we've kind of gone down this path now and we're not saying that that care model is for everybody, because there are some spinal units that have amazing relationships with the respiratory and yours is one of them, hadeep, so you can talk about that. Do you want to talk about that now?
Speaker 2:Yeah, yeah, we're very fortunate. So, just like Marnie's saying, we had definitely we had the same experience, and so having the expertise has been very, very difficult, and I think that's what lends itself to such disparity in the care that we're seeing. So, to be a neuropulmonary rehab expert, right, these are pulmonary physicians that have usually had extra training in non-invasive ventilation and neuro-pulmonary, and they're few and far between, and so general pulmonary physicians often don't feel very comfortable taking care of these chronic neuromuscular type patients, and so that in itself is one of the problems, right, that we are faced with. Fortunately for us, just as Marnie said, in Edmonton we do have an excellent group now of neuro-pulmonary physicians who have kind of taken this on board. So what we've been able to do is have one of those physicians be very, very present on our inpatient rehab unit, and so when all of our patients come on, they all get this overnight oximetry, and then she will assess the overnight oximetry and then determine from that who of those people need a level three sleep study. And, interestingly, access to a level three sleep study is one of those things that's more difficult than it should be, and so I think what we've done here is we've partnered up with a private company in Edmonton who then do the studies. They come in, they have the equipment. They actually have hired their own physicians to read the studies and go over them. They just give the results to our experts and then from those studies then they can decide kind of what to do with that. Do the patients then need to get um, like a, like a blood gas? Then right, if there's and that's the next step to that is, do they need an abg? And if they do, then they get one and they determine them between bipap and cpap.
Speaker 2:But we kind of have this, this system in place with the, with a neuropulmonary physician and her group of respiratory therapists, and I was speaking to her recently and she said that was the most powerful thing that she thought her legacy was here, because I I've always been scared that if she leaves we are in trouble because we are so dependent on this model that she's created that. What do we do afterwards? And I think what she was saying is her respiratory therapists are basically act like she does when she is away. They are now picking up the patterns on the oximetry. They know this algorithm, this pathway, very, very well. Now they also titrate the bipap now they titrate seep, they do all of these things for her and she kind of is just the consultant in the background that is making sure everything is good and obviously there for those really difficult cases.
Speaker 2:So I think leaning on that type of model where we don't have too much bet on having a neuro-pulmonary physician is the key thing. I think that's what you've experienced as well, right, marnie? Even in Australia is access to these people is tough.
Speaker 1:Absolutely, it really is. And I think too that you know these sort of ancillary health professionals, like in Canada it's the respiratory therapist, in Australia it's the physiotherapist, in Europe it's often respiratory trained nurses. But their expertise is extraordinary and often they, you know, are kind of running the show and doing the vast majority of the work with the you know, the consultant, kind of just overseeing or, as you say for those you know, jumping in for those more complicated or difficult cases. So you know, I think that the models that I witnessed overseas that didn't have a respiratory or a pulmonologist as you call them, you know they had ways of screening out complicated disease and so that might be getting a blood gas and if the blood gas is abnormal then that person does have to be referred to a respiratory physician if it's outside of the expertise of that group to implement BiPAP for example. But you know we've since adapted. So I actually published a paper where I synthesized these three different services One was in the Netherlands, one was in Canada and one was in Switzerland and sort of the core components. They all had a lot in common around these small multidisciplinary teams that were highly skilled. They used ambulatory level three sleep studies. They had a way to rule out hyperventilation and then they would implement PAP usually CPAP, but in North America it's more likely to be BiPAP on the ward.
Speaker 1:And then I was approached by a respiratory sorry, a spinal cord injury rehab physician in Sydney so that we all did an ISCOS workshop online. We all did an ISCOS workshop online during COVID, when the ISCOS was meant to be in Japan, and you know it was quite well attended. And the next day this spinal physician contacted me from Sydney to say we want to do this because we don't have good access to respiratory. Our patients are not being screened at all, and so we've partnered with them. We've got a couple of small grants and we implemented, we adapted what was being done overseas to suit the environment in Sydney. We trained up a team of nurses, physios and the spinal physicians to be able to do these assessments. We had mentoring and support from a local respiratory physician at the acute hospital who they could call up if they were stuck or, you know, refer to if they needed.
Speaker 1:And you know, over this 12-month period they've now embedded this care model in their unit and it's going really well. So you know it is possible, it is feasible to do it. You do need extra resources, so you know it is possible, it is feasible to do it. You do need extra resources, so you need. We found out that you do need to invest in a little bit of extra staff because the CPAP implements at the start weren't happening. People would run out of time before the patient was discharged and you do need ongoing training and you do need that mentoring from a respiratory expert somewhere else. But it is possible for rehab units who have never done this to, you know, adapt a care model that suits them and implement it.
Speaker 1:And, as I said before, it's not the only way, you know. A simpler way might be, if you do have a good respiratory access to neuro, pulmonary or respiratory experts is to just tighten your relationship with them. You know, implement a screening program on the ward. Questionnaires, I'm going to say now are useless, don't use in this population.
Speaker 1:We've done, there's been a number of studies now where they've tried to validate, you know, questionnaires like the Stop Bang or the Berlin, which are used in the general population and we've got such a high pre-test probability in this population Like we're talking about. 80% of people with tetraplegia have at least mild sleep disorder, breathing or sleep apnea, and some recent estimates in paraplegia is just as high, you know it's still around 80%. So we have to assume these people have a degree of sleep apnea and the best way to screen is an overnight oximetry. I think ideally, in an ideal world, every patient on the ward should get an overnight oximetry. A 3% ODI has a really high sensitivity and specificity of picking up moderate to severe sleep apnea, of picking up moderate to severe sleep apnea. We need a way then to rule out hypoventilation, which at the moment until we find some better, simple ways is just a blood gas, is probably the safest.
Speaker 2:And the most accurate, because there is. People do say you can look at the oximetry and look up patterns, but then there's lots of differing opinions on that. But the blood gas, like we always say, 45,'s above 45 in our, in both of our countries, then you know for sure. And yeah, the feature that we haven't talked about, your money is also funding. So everyone, again, the individualized model that you set up in your area or your or your center, has to also factor in the funding models there, because when I was speaking to our team, it's very important that they have to get a blood gas, because then funding for if, for example, if someone does have hyperventilation and does need bipac, you will not get funding unless you have a abnormal abg. Yes, so these are the things I have to factor into your, your algorithm and your screening process. How do you get people on something chronically that is then funded chronically?
Speaker 1:yeah, absolutely, and that's why every single rehab center would end up with a different model, because you have these local kind of restrictions that you have to work around.
Speaker 1:And you're absolutely right with funding. It's not just about the blood gas too and a lot of places CPAP or equipment won't get funded if the diagnosis is not signed off by a respiratory physician. So that's a real barrier for some. Or you know, or the prescription is not signed off. You know, wonderful respiratory physician who supported this program in the rehab center in Sydney would meet with the spinal rehab physicians after they had made the diagnosis and sign off on that diagnosis, sign off on that study and also sign off on that prescription so that their equipment could be funded. So there have to be little workarounds until we can change the system and I guess you know, with more research and and more evidence we can then lobby for some of those funding systems to change that. Okay, well, you know, we've shown that it's feasible, it's safe and it's effective for rehab centers to start diagnosing uncomplicated sleep apnea and treating it. Why can't they actually be the ones who sign off on the? You, you know the requests and the person's equipment be funded. But that takes time.
Speaker 2:And then if we can get those models in place, then the rehab centers are the ideal place, because then, while you're titrating either CPAP or BiPAP, they're in a center where you can go problem solve with the, rather than them being at home and get frustrated with the process, which we often find. So they can trial different masks, they can try different um, different inspiratory pressures, whatever it is. You can do that in a setting where titration is easy and I think that's key, absolutely. It goes back to us starting as early as possible and set it. And again, what is the goal of a rehab center? Setting them up for success, for the future, and sleep is one of those things we want to address.
Speaker 1:Yeah, and absolutely and ideally you would in a rehab center, you know, use that time to get them on CPAP or to get them on treatment. Some people aren't ready at that point in time and that's fine. You know, often, even if you just do the test and they refuse the treatment at that point in time, often what will happen, I'm told by clinicians, is that in 12 months' time, when they go back and they try and get back to work or into study and they realize that they're really struggling from a sleep point of view, they'll think back oh yeah, that's right, I've got that sleep problem and then go and talk to their doctor about it again. But you know, most people will give it a go, I think, in rehab. But there are of course some that are just not ready at that point in time and we just respect that as health professionals and you know it'll come back.
Speaker 2:I can definitely reinforce that from my experience just being the same, and sometimes it's some of those other secondary complications that we talk about, like the pain and the spasticity are getting so bad once they leave, that we're like, oh, do you remember that sleep problem that we told you about? That could be factoring in. And then all of a sudden there's more buy-in because obviously it's affecting their quality of life, right, yeah, so it's one of those things that one way or another, we need to go circle back to sleep.
Speaker 1:Yeah, exactly, exactly. I think we've talked a bit about the, the care models, hadip, um, I get you know and the importance of adapting the model that there is. You know, there's so many different ways that rehab could do this and we've only really talked about sleep apnea at the moment. But we're you know, obviously our message is that there's um, there's a lot other than sleep apnea that rehab centers can do to improve sleep quality in people with spinal cord injury.
Speaker 1:I'm going to give a little plug for a workshop that I'm running at the ISCOS meeting in Gothenburg in October this year. So if anyone listening is going to that meeting, we're running a workshop which is called Don't Forget About Sleep Strategies for Spinal Cord Injury Rehab Centres to Identify and Treat Sleep Apnea. It's going to be on Friday, the 10th of October at 4pm and you'll hear in that talk we've got four rehab physicians who are all going to be describing their alternative, the different pathways and models that they've developed and implemented in their units to manage sleep apnea. And you know, I guess it'll be quite interactive and we'll be encouraging people who attend to think about where are the gaps in their own services and what they could potentially do to improve the management of this very common and very, I guess, problematic condition for people with spinal cord injury.
Speaker 2:Yeah, that sounds great. I will be there. I'm going to be there. It'll be fun, all right. Well, I think that wraps it up, marnie. Well, thank you very much for your expert inside scoop on sleep. Oh, thank you for your expert clinical.
Speaker 1:I look forward to meeting you in person, Hadeep, at the conference.
Speaker 2:I'll see you there. I'll see you. Hopefully other people are listening in.
Speaker 1:And if anyone has any questions, feel free. I think in the podcast you should find a link to our emails. Hadeep or I would be more than happy to have a conversation if anyone's interested.
Speaker 2:Thank you for joining us. We hope we have convinced you that sleep should be taken more seriously in spinal cord injury rehabilitation and have given you some ideas or inspiration to make changes in your own clinical practice.