Dr Sheila Garland - Sleep and Cancer

In this episode of Spotcast, I am joined by Dr Sheila Garland, Clinical Psychologist and Professor of Psychology and Oncology at Memorial University of Newfoundland. 

Dr. Garland conducts psycho-oncology and behavioural sleep medicine research with an increasing emphasis on examining the mechanisms and effectiveness of interventions to improve sleep and other symptoms in cancer survivors. 

Resources: 

Dr Sheila Garland : www.sleephealthwellnesslab.ca

Map of insomnia experts https://www.researchsleep.ca/cbtimap 

Sleep Information: https://www.researchsleep.ca/public 

Book recommendation from Dr Garland: Sink into Sleep https://sinkintosleep.com/about-the-book/

Melanom-What-You-Need-to-Know-Melanoma-Canada.pdf

Support and Resources - Melanoma Canada

Transcript

SPEAKER_01 0:04

Hello and welcome to the podcast. My name is Emer Hagen. I am the patient support manager in Melanoma Canada, and I will be the host of your podcast. In today's episode, I am joined by Dr. Sheila Garland. Sheila is a clinical psychologist and professor of psychology and oncology at Memorial University of Newfoundland. Dr. Garland studies psycho oncology and behavioural sleep medicine, focusing on how interventions improve sleep and related symptoms in cancer survivors. Sheila talks today about how common sleep problems are for our patient community and when and how patients should seek help. Sheila offers lots of helpful tips and talks about her current research, the ICANN Sleep App, which is co-designed by cancer patients for cancer patients experiencing insomnia. We hope you enjoy the episode and please share with anyone you think may benefit from it. Hello, Sheila, and welcome to Swiss Podcast. You're very welcome and thank you for joining me today. Thank you. And today we're going to be talking about the really important topic of sleep and sleep for our melanoma and skin cancer patients. So yeah, I'm wondering if you can kick us off and just tell us a little bit about yourself and about your career and how you've ended up, I suppose, working in this field.

SPEAKER_00 1:23

Yeah, thank you so much. Sleep is something that has been getting a lot more attention in the media lately, and it's also something that is more of more of an interest to you know clinicians and patients. I started working in this area about 20 years ago when there really wasn't much going on. It was during my doctoral work for my clinical psychology degree. And at that time, I could probably, you know, list off all of the publications that were looking at cancer and sleep. And now, 20 years later, I'm a professor of psychology and oncology at Memorial University in St. John's, Newfoundland. And the number of publications and you know, even like Google searches for sleep and cancer have just absolutely skyrocketed. So I think finally it's getting the attention that it deserves because it is such a foundational health behavior. So, you know, I think especially in the cancer areas, people always talked about like diet, nutrition, physical activity. Um, but they it I think that that's like a three-legged stool. If you don't have that third leg there of sleep, um, a lot of those other foundational health behaviors, you know, just don't land the way that they should.

SPEAKER_01 2:46

Yeah. Yeah, absolutely. And it's it's something that I suppose talk to patients around every day being the patient support manager. I interact obviously with patients on on different levels and throughout their journeys and different stages. Um, but I always talk around those sort of, as you said, four pillars of health, I like to call them. But yeah, you know, physical activity, you know, nutrition uh and diet being one. But sleep isn't so important that it's something I think I would say nearly 99, if not 100%, of patients, you know, will will talk around to me. So I suppose it's it's it's really, really important. Um and I wondered if you can talk a little bit around maybe why sort of sleep problems or sleep issues um are incredibly uh incredibly common for cancer patients.

SPEAKER_00 3:30

Yeah, so I think you know, in the general population, um, depending on age and stage of life, um, you're going to have a higher baseline prevalence of sleep problems and insomnia is one of the most common sleep disorders. And so that is more than just a sleepless night, right? So everybody would have the occasional difficult time sleeping, and that's normal. But when you have difficulty staying asleep, um falling asleep, and this is happening for at least three days per week for at least three months, it's likely that the sleep disturbances have become entrenched and would meet diagnostic criteria for insomnia disorder. The prevalence of that in the general population is about 10%. The prevalence of that in people who have been diagnosed with cancer jumps depending again on the stage of their cancer treatment. So if they're active treatment on surveillance or, you know, things like that. Um, and then also, you know, the type of cancer they have, how it's measured, but it's anywhere from 30 to 60 percent. So you've got about at least a three time three times higher prevalence of insomnia in people diagnosed with cancer than the general population. The increased prevalence can be due to a lot of things. So one is just the increased stress and anxiety that comes with a diagnosis and um you know what that means, and trying to, you know, kind of cope with that, or um, there's also the side effects that might come from treatments. So depending on you know uh what the treatment regimen consists of, if there's steroids that have to be, you know, uh taken concurrently with the treatment, those often just a side effect is insomnia. So people are just wide awake and wired. Um, and if they're not prepared for like, by the way, you're probably not gonna sleep on these medications so well. You know, that can be very, very distressing. You know, there might be nausea, fatigue, um, uh, could be pain, um, you know, surgical recovery, the effects of anesthesia, um, there's all of those sort of like physical things, but then usually there's quite a bit of disruption to someone's normal routine, um, where you know, if they're taking time off work for a while, their regular activity routines are disrupted, they're no longer they're no longer getting up at the same time in the morning, they're no longer engaging in their daytime activity in the same way, they might not be going to bed at the same time, and so um they might be disconnecting with friends or social activities, and all of those disruptions in somebody's regular routine can also disrupt their sleep. So you've got like all of these kind of components which layer on, which then maybe it's not so surprising why people who have a cancer diagnosis experience insomnia at such high rates.

SPEAKER_01 6:29

Yeah, you you touched on a on a lot of things there that I want to delve a little bit more into. Um, but uh, but I suppose my my first question is you know, you you mentioned they're sort of thro experiencing it for three days within three months. Is that is that the sort of the trigger point when you know patients should be concerned and should seek help?

SPEAKER_00 6:49

Yeah, so that's when you know that would be like the diagnostic criteria for insomnia disorder. That's when we know it's not likely to resolve by itself.

unknown 6:59

Okay.

SPEAKER_00 7:00

So, like during that period, like as I said, it's really normal, especially uh, you know, when faced with something that's stressful, to have acute periods of insomnia. So that would be like a few days where you're not sleeping very well. But then usually, you know, the stressor might get better, it might resolve, you know, and then you you go back to sleeping normally. Um, for something that's a stressor which might not be as easy or as quick to resolve, you know, it might take a little bit longer. People might even experience this for you know um stressors like you know, uh a change in occupation or you know, moving or something like that. Like, you know, those those are stressors, even if they're good stressors, they're still stressors which might take a while. But once you have um at least three months where it's been happening more than three days per week, you know, then there's there's um a pattern that sets in where um systems have been sort of developed that make it that, okay, you know what, this is stuck now. This is a this is a habit, this is a pattern that your brain and your body have gotten into, and it's not likely to um resolve on its own at this point.

SPEAKER_01 8:12

And and in that case, then what would your advice be to patients who are experiencing that? What how do they do how do they go about seeking help, I suppose, is the question.

SPEAKER_00 8:21

So prevention is often preferred to kind of treating it after it has developed. And I think education at the outset is so important for people to understand what to expect and what to do and what not to do. So one of the things to explain to patients, and this is um really simple, but so, so important, is that we have two major processes which control our sleep. One is called the sleep drive, and the other is our circadian rhythm. And so the sleep drive is actually controlled by a neuromodulator in our brain called adenosine, and this builds up in our bloodstream the longer that we're awake. So, for example, if I'm a seven-hour sleeper and I wake up at 7 a.m., right? So I'm a seven-hour sleeper, if you take seven hours away from 24, I'm gonna need 17 hours of sleep pressure to build up before I'm likely to go to feel sleepy again, right? So if I wake up at 7 a.m., I'm not likely to fall asleep until midnight. What happens with a lot of people in that period between the insomnia being like acute or you know, really, really short term and becoming chronic is people start behaving differently without the awareness that this behavior can contribute to maintaining their insomnia. So one of the things that people will do, especially if they're, you know, not working for a while or you know, they don't have that same sort of structure, is they'll start saying, all right, well, if I don't have to get up at 6 a.m., why would I get up at 6 p.m.? I'm gonna start getting up at 8, right? That seems more reasonable. I feel terrible, so I'm gonna get up at 8. But then if they are a seven-hour sleeper and they still need those 17 hours of sleep pressure to build up, their morning wake-up time is their biggest predictor of when they're gonna fall asleep. So they're not likely to fall asleep until 1 a.m. But they might still want to go to bed at the same regular time, which might be like 10. And so then they find themselves lying in bed for three hours, being awake, being frustrated, um, you know, or or you know, on the opposite, because they feel so terrible with their treatment or something like that, they might say, I'm gonna go to bed earlier and I'm gonna try harder to fall asleep. And again, if they haven't had that sleep pressure buildup, that is just going to cause them a whole much a whole bunch more problems because you know, they don't have the sleep pressure, so they're gonna be lying in bed frustrated. Why am I, I feel so tired, but I'm not actually sleepy enough to fall asleep. So having an understanding of sleep drive is really, really important. Um, the other factor that I mentioned was circadian rhythm, right? So that's making sure that people are doing things which entrain their circadian rhythm. So getting up at those consistent times, getting exposure to light, getting exposure to physical activity, um, and um making sure that those are consistent with how they were sleeping prior to, and then making sure that they've got the wind down time, right? They're not on their phone in the you know, hour, 90 minutes preceding bedtime, they're not scrolling. It's not so much about the light from the devices, it's about the engagement with the devices, right? If they're Googling or they're going down a social media rabbit hole or you know, things like that. So those are some really simple behaviors that can prevent the development of insomnia because one of the key factors with chronic insomnia is that there develops a conditioned association between the bed and being awake. So when you repeatedly pair the bed with things other than sleep, the bed becomes a trigger for those behaviors or those emotions. So this is why people will often say, I can fall asleep no problem on my couch. But then as soon as I go to bed, my mind turns on, I'm rate, my my thoughts are racing, I feel like I'm wide awake. It's because they have paired thinking, worrying, planning, being frustrated, you know, being upset with the bed. So then as soon as they go to bed, their body thinks, poof, well, this is the place and the time that I do all of those activities.

SPEAKER_01 12:50

That that makes, you know, huge, huge sense. And I know from from talking to patients, you know, those those early hours of the morning when, you know, the worry, you know, that maybe just have received a diagnosis or they're going through treatment, as you say, all those factors that have added into that, maybe they're on the steroids, they're wide awake, you know, and they're lying in the bed and they're trying so hard to keep that routine of staying in the bed, of not maybe waking in a partner, you know, not wanting to move around the house if there's young kids. So yeah, going on the phone is is probably the first thing many people will do that maybe don't want to switch a light on the to read a book or something like that. Um but but how important do you think those I suppose routines are? You you've touched on it there uh a couple of times, you know, even daytime routine, it all leads up, but all builds up to, you know, there's a lot of emphasis now, I think, in the in the health and well-being world around morning routines and and nighttime routines, you know, in your opinion, are they as important as as people are talking about?

SPEAKER_00 13:47

Absolutely. And I think sometimes when we are adults, um, we think that somehow routines don't matter. But anybody who has young children or pets, you know, or something like that, we start getting our kids into a routine, right? And you know, it trains their body and their mind what to expect. Um, you know, pets are the same way, right? You know, their their clocks get pretty well timed if they know this is the time I eat, this is the time I go to my kennel, this is you know, whatever else it is. And we're not different than that. Um, and so having those clear routines to help our body transition from being asleep to being awake or being awake to being asleep are really, really important. Um, and I think also acknowledging, too, um, that there's a lot of misconceptions about um what good sleep is, and I think as I mentioned at the beginning, there's a lot of attention in the media about sleep, but sometimes that like attention is not actually helpful because it creates anxiety in patients when they they shouldn't be. Um, one of the most common sleep myths is the idea that everybody that eight hours is somehow this like optimal amount of sleep, and if you're not getting it, then you know maybe you're um going to compromise your health. And that is not true at all. There's you know a range, anywhere from about six to ten hours could be the healthy range for the population. So if somebody you know regularly gets six hours of sleep and feels like they're able to function on six hours, they're not feeling compromised, six hours is perhaps what you need. Um, and then there's the other people who you know they're like, nope, nine hours. You know, I'm a longer sleeper, I need about nine hours. So so there's no one kind of um golden number um for everybody. Uh, and trying to rely especially on devices, like if your you know, watch is telling you or you know, something like that that you're not getting enough REM sleep or you're not getting, you know, enough total sleep time, um, those devices um can create a problem um when there is no problem.

SPEAKER_01 16:13

Yeah. Yeah, that that's definitely a a deeper conversation I would love to have with you in that. We'll save that for another time around, I suppose, tech and and the way that I suppose the world is structured now. Um I'm wondering if we can touch just briefly on, I suppose uh we've we talked around it around fatigue and I suppose cancer-related fatigue and and so many patients that you know experience it and through whatever the the reason might be, you know, you've touched on it in your life of, you know, anxiety over diagnosis, mental and physical elements as you know can can relate into cancer-related fatigue. Um and I suppose patients I'm just wondering if you could maybe talk a little bit around that, you know, how you want to explain that to patients that I suppose cancer-related fatigue is not like other fatigue or tiredness as as we've talked around. Um, and and how is the how are the best ways to combat that?

SPEAKER_00 17:02

Yeah, so the definition of like how to distinguish fatigue from cancer-related fatigue is that the fatigue experienced by other people is usually relieved by rest, right? So they feel like, okay, I've rested now and you know I feel better. Cancer cancer-related fatigue does not tend to be relieved by rest. Um, and for a lot of people, um, there is a confusion between fatigue and tired and sleepy. Um, and so a lot of the times because they feel very tired, they think, oh, I must need sleep. But that's not always the case because if they lay down and they close their eyes and they don't fall asleep, then tired does not always equal sleepiness. So I try and work with people to keep their sleep routine the same, because we know if somebody does fall asleep during the middle of the day, understanding sleep pressure, that is going to impact their ability to sleep that night, right? Because it doesn't necessarily change your sleep need. If you were a seven-hour sleeper and you slept for two hours during the day, that means you're probably only going to get five hours of sleep at night. And then it's going to perpetuate this problem of daytime sleeping to try and resolve the cancer-related fatigue, which sleep is not necessarily going to do that. So working with cancer-related fatigue and thinking about your energy as a renewable battery or a rechargeable battery, where there are things to do to rest, to recharge your battery, but there's also ways you can generate more energy by doing things that um uh induce pleasant emotions, right? So a lot of times people will say, Oh, I need to rest or I need to pace myself and I need to prioritize. And those are all good strategies, but not at the neglect of things that, you know, I need to generate more energy. So physical activity is one of those good um things that you know will generate energy as long as it's right for the person. Um, you know, getting out in daylight will also generate activity, right? Strengthening those circadian alerting systems and um engaging with a friend, um, laughing, you know, even like watching, you know, silly cat videos on YouTube or something like that, right? Engaging in that way can make you feel better. And and so that's a sign that you know the fatigue has a physical component, but it also has an emotional and a mental component to it. So engaging with that physical um is fine, but the emotional and mental components of fatigue also need to be addressed.

SPEAKER_01 20:12

Absolutely. I I love that. I love that reframing of it, of the recharging. Yeah, and and I talk to patients around, you know, like imagining yourself like your phone battery, you know, you you plug it in every every evening to recharge it. And you know, if you can generate goodwills throughout the day to recharge your own battery, that's that's gonna stand obviously in in good stead. Come hopefully the evening time when when sleep is is desired. I'm wondering if you can talk this around now just a little bit of what you are currently working on and you know the the I Can Sleep app.

SPEAKER_00 20:44

Yeah, so um I've been really trying to address the shortage of qualified trained providers that are able to deliver evidence-based interventions for insomnia in cancer. So the gold standard intervention is something called cognitive behavior therapy for insomnia. Um, we know the treatment works really well. It works as well as sleeping medications, um, and it's more effective than sleeping medications in the long term. Because what we know is once you stop taking the sleeping medication, the insomnia usually returns. But with cognitive behavior therapy for insomnia, it's a more durable intervention because people know now how to address it themselves. But there's a massive shortage of people who are comfortable delivering this intervention. So over the past five years, I've worked to develop a mobile app that has taken what I would do in person with somebody and put it in the palm of their hand um on their device. So uh it's currently in a clinical trial right now that is um available across Canada. Um, so people can come in and um Help me evaluate this app. It's currently available to anybody who has had a cancer diagnosis and also has insomnia. There's no restrictions on type of cancer, stage of cancer. The only thing that we ask is that their treatment regimen is stable, right? They're not expecting any big changes. So if people are on like immunotherapies, long maintenance time or things like that, that's completely fine. It just needs to be stable. So, you know, if people are expecting, you know, surgeries or you know other treatments, probably not a good time to engage with this. But we wanted to make it as accessible to people as possible. Um, right now it is only available uh as an iOS app. Um, we're working on funding to be able to translate that to Android devices, but we had to prioritize either making it available in both official languages or both major platforms for devices. So we decided to make it available in both official languages, so it is accessible to um Canadians, but right now it is available only on iPhones to all Canadians.

SPEAKER_01 23:17

Like that makes absolute sense. And in terms of like how long is the study going to run for? You said it's in a clinical trial phase.

SPEAKER_00 23:25

Yes, um, the timeline is until we recruit enough people to be able to adequately power our analyses. So we're looking to recruit 146 um Canadians. Um, so we're about halfway through. So I imagine that we're gonna be recruiting until at least the fall. Um, so over the summer. Um people are either assigned to an immediate group where they get the app right away, um, but we also follow up with them three months later after they complete because we want to look at the durability of the changes. Um, the other clinical trial arm is a wait list. So everybody gets treatment. Some people might just have to wait two months before they get treatment. So that was another big um uh factor that we wanted to make sure is that everybody will get treatment. Some might come immediately and some might come after two months.

SPEAKER_01 24:21

Okay. And and how do patients get involved if there's people listening who want to sign up?

SPEAKER_00 24:27

We have our website. It's just uh really easy to remember. It's ikansleep.app. Um so going onto the website, checking that out, you can um contact the research team right through that website, uh, and then we will take you through all of the other steps you would need to sign up at that point. Um, we're really excited about this just because you know, this is something that has um not been available and there's such a high need and a high demand. So we're excited that this is going to be something that people can access regardless of geography, as long as they've got, you know, um the ability to use their mobile device.

SPEAKER_01 25:05

Yeah, that's that's great. It it by the signs of things, you've really tried to make it as accessible and and user-friendly as possible. And just if you can just touch slightly on, I suppose, a little bit of of what's involved in that. I know it's a it's a seven-week-based program, is that correct to say? And and what what can patients expect if they do sign up?

SPEAKER_00 25:24

Yeah, so um so yes, it is seven weeks. Um the first week is more of kind of getting to know your sleep. Um, so what we developed in the app is the app will um tailor its recommendations based on your unique kind of sleep um difficulties. So if you have difficulties falling asleep or staying asleep or both, um, it's going to take your data. So you're going to be entering in information about your sleep every night, and it's going to take that information and then give you an individualized sleep program. And then each week you're going to be guided through specific strategies to help address the concerns that you have. And then there's also other information that is specific to cancer. Um, so how to work with sleep and pain, or how to manage hot flashes, or you know, how to uh should I take melatonin, or you know, a lot of these questions that people will have. There's a pretty extensive library of information included in the app as well. Um, so a lot of resources there. Um, it was co-designed with people with lived experience, so their stories are worked into each week. Um, so you know, how did this person handle this? And you know, what was their experience? Uh so we really tried to make sure that people can see themselves in the app and make sure that the feeling is that you know it really was designed with and for them.

SPEAKER_01 26:58

That sounds fantastic. And then at the end, I suppose, of this trial, like the this clinical trial, is to gather all that good data of input from patients and then, you know, a long-term solution, as you said, uh to the program.

SPEAKER_00 27:12

Yeah. Yeah, uh, you know, long-term is that I really want to ensure that this is accessible to all Canadians. So we're looking for partners to be able to continue to invest in the app to uh make sure that regardless of where you are or where your stage is, you're going to be able to access this. I'm hoping to avoid having to put it behind a paywall. Um, but then that's going to rely on, you know, partners to be able to come in to make sure that it is accessible.

SPEAKER_01 27:47

Yeah. And and we wish you every every success in that, you know, as as Melanoma Canada, yeah, we we're a big believer in trying to keep things, you know, accessible and and available to to to patients. So yeah, we'll we'll keep an eye on that uh with you. There's there's a lot of things I could talk all day with you around. Your time is is precious. But in terms of some maybe some leave-in advice for our our melanoma and ergogen cancer community, um any advice or top tips you've given lots throughout throughout this this uh episode. But I'm wondering if you could maybe wrap it up with a few helpful tips for anyone. You know, we we obviously serve our patients, but also our caregivers as well. You know, we know they experience um you know issues with with with daily life with sleep and and routine and and things like that as well. So any closing uh closing remarks from you?

SPEAKER_00 28:39

Yeah, so I think that you know, if people are noticing that they're starting to worry about their sleep, or if they're starting to behave differently, or um trying to do things to like do things to force, or you know, that they have increased effort to try and sleep, um, those would be, I guess, understandable responses to difficulty sleeping. But um sleep is not something that can be forced, right? So it's such a biological experience. It would be very similar to if somebody said to you, you need to digest your food better. And then if somebody really tried to be like, oh, maybe I'm not digesting my food better, I should really pay attention to all of those like symptoms that I experience when I eat, and then I'm gonna start worrying about it. And then we could even cause ourselves an ulcer or some you know, irritable bowel or something like that by focusing and worrying about something that is largely biological. Like, you know, the more hands-off we are for our sleep, the better our sleep becomes. Um, but people, you know, obviously the experience of sleep sleeplessness is very uncomfortable. So we want to fix this problem. So I think you know, it's a sign if people are worrying or or finding that they're thinking a lot about their sleep or trying to influence their sleep in their ways, um, to access reputable um recommendations. Um, and you know, some of them I I talked about here, where you know, the key ones are waking up at the same time every day, right? Because that's your morning anchor to influence what time you go to sleep. Um, you know, only trying to restrict activities in your bed to sleep and sex, right? So those are the activities that should be done in your bed, not reading, well, reading only if it's like, you know, something that helps you go to sleep, but you know, other things like worrying, planning, whatnot, um, those should be outside of the bed. And um, you know, I guess having factors, having um supports um and information to know all right when it's a problem and when to get help.

SPEAKER_01 31:02

That's that's great. Thank you for for wrapping that up. And thank you so much for you know taking the time, you know, to join me today. I know you're very busy, but thanks for sharing all of your your nil knowledge and and expertise. Um, because I know I've learned I've learned a lot, so I'm I'm hoping our listeners will have learned a lot as well. So thank you so much, Dr. Sheila Garland.

SPEAKER_00 31:21

Thank you for having me.

SPEAKER_01 31:27

Thank you for listening to the podcast. We will be sharing new episodes every month, so please be sure to like and subscribe wherever you get your podcast. Uh and you will find the resources and links from today's episode in the description below.