Ellyn E. Matthews, PhD, RN, AOCNS, CBSM, shared her insights on the latest evidence-based practices for nurses to address sleep issues with patients and survivors.
Ellyn E. Matthews, PhD, RN, AOCNS, CBSM
Ellyn E. Matthews, PhD, RN, AOCNS, CBSM
Nurses know only too well that lack of sleep can be a challenge for patients during and after treatment for their cancer, and this affects their caregivers, too. Until recently, there wasn’t much that clinicians could do to help, but a growing body of research points to some relatively simple behavior modification strategies that nurses with the right training can apply in their practice.
Oncology Nursing News spoke recently with one of the leading researchers in this field, Ellyn E. Matthews, PhD, RN, AOCNS, CBSM, who holds the Elizabeth Stanley Cooper Endowed Chair in Oncology Nursing at the University of Arkansas for Medical Sciences. Matthews shared her insights on the latest evidence-based practices for nurses to address sleep issues with patients and survivors.
Over the last 20 years there has been a lot more work, beginning with identifying the prevalence of sleep problems. The studies have shown a pretty broad range—anywhere from 30% to 90% of patients with cancer. We don’t have a standard definition of sleep disturbance, and the research has involved a variety of different populations. That said, we do know that it’s a problem.
I think every clinician will tell you that they hear stories every day about sleep problems in patients with cancer during treatment and long after treatment, and this affects their caregivers, as well. The issue has always been there, but, honestly, only now are we beginning to have more studies that show we can do something about it. It’s really important that clinicians know that sleep disturbances can be managed better and treated better.
We’ve also had some recent studies demonstrating that the problem is still underreported. Patients often don’t talk about it. Clinicians are focused, and rightly so, on day-to- day priorities that are more acute—symptoms that if they are not dealt with can have very serious consequences.
But sleep is still an important priority, and it does need to be a regular screening. The needle is moving slowly, but it’s getting there. More research is being published in clinical journals and presented at conferences, and when I talk to clinicians, they do get it. It’s not just, “oh well, it’s just sleep.” They’re really beginning to understand that we need to make changes. Optimistically, I would say that we’re moving in the right direction.
Sleep disturbances is a broad term for complaints that people have about their sleep in the absence of a specific diagnosis. Sleep disorders are really one of the nearly 100 diagnostic categories that have specific criteria. The terms are sometimes used interchangeably.
In terms of disorders, insomnia is a diagnostic category. It meets specific criteria, and it is very common in patients with cancer. Also very common in the general public, but in patients with cancer even more so, is sleep-disordered breathing, which is not surprising, because this occurs often as we get older and increases in women after menopause. Obstructive sleep apnea is a common manifestation of sleep-disordered breathing. It’s a pretty serious problem generally, but also you see it quite a bit in patients with cancer. Other common sleep disorders include circadian rhythm disorders and movement disorders, for example, restless leg syndrome.
If obstructive sleep apnea is suspected, that would require diagnostic testing and treatment. For insomnia and circadian rhythm disorders, one of the first steps is to identify it and then suggest some behavioral changes and work with the individual to find out what’s at the root of the problem. This doesn’t necessarily require an immediate recommendation to a sleep specialist, but if it’s not improving with changes in behavior and improved sleep hygiene, then it might require a consult with a sleep specialist.
Often people don’t realize how timing of what they do during the day can interrupt their sleep at night: for example, consuming alcohol or using electronic devices close to bedtime. Maybe they’re going to bed at very different times and waking up at different times. A big part of our sleep is our behavior, and sometimes somebody from the outside looking at what a patient does on a day-to-day basis related to sleep, the clinician can say, “why don’t you try something different and this may improve your sleep?”
This is surprising, but there are not a lot of studies that have looked specifically at patients with cancer and the use of hypnotic agents for sleep. Most of the work has been done in primary insomnia, so we don’t have that good a level of evidence. Nevertheless, prescribing sleep aids is common, because it’s easy, patients call for it, clinicians feel it helps, and it does help. It’s actually recommended for short-term use, to get a patient through a difficult period when he/she is not sleeping. But if the problem is projected to be a long-term one, the better strategy in the first line is to make some behavioral changes involving sleep hygiene and sleep habits. That approach may get to the root of the problem and not cover it up with medications which have their downside as well.
CBTI is actually a multicomponent treatment, and the beauty of it is that although individually the elements can make an impact, when taken together, the package really influences sleep quality and specific sleep parameters.
First, sleep scheduling. When people have circadian rhythm disorders, where their schedule is just willy-nilly (going to bed at very different times and waking up at different times), that can really have an impact on their sleep. The body just doesn’t know when it’s supposed to sleep and when it’s supposed to be awake. By asking patients to fill out a sleep diary, you can determine what their usual sleep schedules are and what their typical average total sleep time is. Then with that baseline, you say, “well, what time in the morning do you need to wake up?” If they say, 6 o’clock, for example, and they typically get 6 hours of sleep but are still not feeling rested, you suggest a specific bedtime and wake-up time. This helps to build up their drive to sleep over a period of time. As long as they don’t go to sleep any earlier, they’re going to be able to have a high sleep drive which allows them to fall asleep more quickly. This is a big problem for some people with cancer—they can’t fall asleep. Scheduling provides the correct architecture for individuals to consolidate their sleep and get their sleep in.
I've worked with a lot of people with sleep problems, and no matter what some patients do, it unlikely they will wake up in the morning feeling perky. It's just their makeup. But with coaching, their sleep can improve enough that they feel less sleepy, more functional, and enjoy an overall better quality of life during the day.
Another component of CBTI is stimulus control. We often do things in the bedroom that are not consistent with winding down and letting our body know it’s time to sleep. We might have our laptop, e-mail open, or phone, or we may eat, watch TV, or do all sorts of things in the bedroom that are not consistent with sleep. People need to break that connection and only engage in sleep-consistent behaviors in the bedroom. There are different degrees to which clinicians need to be really rigid about that. For example, if a couple rests and relaxes by watching a little TV in the bedroom, I usually don’t say, “oh, you can’t do that.” But when individuals have a sleep problem they will need to make some those changes that may be difficult at first.
Sleep hygiene helps individuals to make these changes. Patients with cancer have lots of worries, and we need to help them to avoid that cycle of worry when they’re in the bedroom. Sleep hygiene involves promoting good sleep habits, such as regular meals and a light bedtime snack, habitual exercise, and limited use of caffeine, nicotine, and liquids in the evening.
The last component in standard CBTI is really working with the individual about reframing their cognition about sleep. If a person thinks, “I have to have 8 hours of sleep, and if I don’t, I’m going to be a total mess the next day and terrible things are going to happen,” you need to help them reframe that and ask, “how many days have you gone where you didn’t get 8 hours of sleep and you still managed to get through the day?” Help them to put their sleep in perspective, because dysfunctional thoughts about sleep can actually perpetuate their sleep problem.
The Oncology Nursing Society’s Putting Evidence into Practice (PEP) module is really helpful. For the first time last year, CBTI was determined to have enough evidence to recommend it for practice. That’s a big step. I think nurses are very well positioned to do CBTI. At this point, not a whole lot do have that expertise, and supervision and training are needed initially because people’s sleep problems can be very individual, and you want to make sure that you’re not doing anything to harm them.
Empowered patients will talk about it, but others may feel like, “well my providers know best, and if they haven’t mentioned it, it’s probably not a big deal.” Nurses need to screen for sleep problems at each assessment. If sleep apnea is suspected, they would need a referral. But if it’s insomnia, you can begin with some suggestions to improve their sleep habits. This is where nurses may prevent even bigger problems if they catch it early enough.
When a patient is in active cancer treatment, with a lot of symptoms, sleep is going to be very difficult, and that’s probably when hypnotics for a brief period of time are indicated. But we know that long after primary treatment is over, survivors have sleep problems that they’re still dealing with. Some people have told me, “My sleep hasn’t been right since I had a cancer diagnosis.” Whether that’s directly related to the cancer or the treatment, or whether it’s a function of aging and other changes, to me it doesn’t matter so much. The problem is identified, you should start to address it, and work with patients on it.
Even the academic centers are lagging behind, and they can do better. First, screening is really important, and you don’t just ask once—you continue to ask: How’s your sleep and how is it affecting your day? What have you tried? Particularly if you’re prescribing medications, you really need, at each visit, to keep checking in and seeing how they’re doing and not just figure the problem has been solved. So, screening and ongoing monitoring of the problem is the first priority.
Time is always a big issue in clinics and particularly in the community where they might not have a whole lot of other resources. Patients are on the Internet all the time, and Internet-based CBTI is not expensive. There are reputable CBTI resources patients and survivors can access online through the National Sleep Foundation and the American Academy of Sleep Medicine. Patients or survivors can try the strategies and report back to nurses on how it’s working out.
What I’m working on now here in Arkansas is designing a study to look at how can we get CBTI implemented into different types of clinics. What works in an academic center doesn’t always work in a community setting. We know the approach works, we know it works in patients with cancer, and we know we can deliver it in a variety of ways: telephone, group, individual brief (3 to 4) or more sessions (6 to 8). How do we make this program accessible for as many patients as possible? In this project, we’ll be looking at the science of implementing CBTI, what needs to be done, what’s the cost, and what are the cost savings? Click here to learn more about cognitive behavioral interventions to help patients manage sleep—wake disturbances.
1. Matthews EE, Berger AM, Schmiege SJ, et al. Cognitive behavioral therapy for insomnia outcomes in women after primary breast cancer treatment: a randomized, controlled trial. Oncol Nurs Forum. 2014;41(3):241-253.