Christopher J. Recklitis, PhD, MPH
Fatigue and sleep disruption are common occurrences for most patients diagnosed with cancer. Simply having a serious physical illness like cancer along with its associated pain, hospitalization, and treatment, as well as the attendant psychological impact, all contribute to the onset of fatigue and insomnia in patients. And while the symptoms of fatigue and insomnia usually begin to diminish in the weeks and months after completing primary cancer therapy, for a sizable minority of survivors—between 20% and 30%—the problems remain constant as much as a year and longer posttreatment, severely hindering survivors’ quality of life.1,2
The National Comprehensive Cancer Network (NCCN) defines cancer-related fatigue as a “distressing, persistent, subjective sense of physical, emotional, and/or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning.”3
For survivors with cancer-related sleep disturbances—defined as difficulty falling asleep lasting over 30 minutes, or nighttime awakenings that add up to over 30 minutes or both, with a ratio of time spent sleeping to time spent in bed less than 85%—the problem can be so debilitating that it can impact cognitive function, compromise the body’s ability to fight infection, and initiate feelings of anxiety and depression.
Although most studies of insomnia in cancer survivors have focused on older women, according to research by Christopher J. Recklitis, PhD, MPH, and colleagues, adolescent and young adult (AYA) cancer survivors are also at risk for developing insomnia, possibly due to anxiety and medical late effects.4 In addition, said Dr. Recklitis, women are more susceptible to symptoms of fatigue and sleep disturbances than men, which is true even in the general population.
The ASCO Post talked with Dr. Recklitis, Director of Research and Support Services for the Perini Family Survivors’ Center at Dana-Farber Cancer Institute and Assistant Professor of Pediatrics at Harvard Medical School, about why some survivors experience persistent symptoms of fatigue and sleep disturbance long after active treatment ends and how palliative care can help mitigate the problem.
Contributing Factors
Why do so many cancer survivors have lingering issues with fatigue and insomnia posttreatment?
The models we have for insomnia suggest that several factors contribute to the problem, and they are probably relevant for fatigue as well. One contributing factor is having a predisposition for the problem. For example, some people are naturally late sleepers and others are short sleepers; both conditions can set up survivors to develop insomnia after cancer treatment. We know that women and older people tend to be lighter and shorter sleepers and are more likely to develop insomnia.
Then there are precipitating factors such as anxiety, which develop as a result of having a cancer diagnosis. Patients are often very upset, and they can’t quiet their minds the way they could before their diagnosis.
Treatment for cancer, including radiation and chemotherapy, can also cause sleep problems because it can throw off patients’ sleep cycles, possibly due to hospitalizations (which can interfere with regular sleep patterns) or because of physical symptoms (such as pain) that can make it difficult to sleep. Similarly, just not feeling well and napping on the couch all day will make it hard to get a full night’s sleep when it is time to go to bed in the evening.
Ongoing medical conditions, such as cardiovascular disorders, pulmonary disease, and sleep apnea, can also interfere with sleep patterns and cause insomnia and fatigue, as can some medications that survivors may be taking for these medical conditions.
An intriguing biologic explanation being pursued by several researchers suggests there may be a physiologic inflammatory response to having cancer, which causes lingering fatigue.— Christopher J. Recklitis, PhD, MPH
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The issue we are having difficulty understanding is why the problem goes on for long periods of time after treatment ends. One reason may be that survivors develop bad sleeping habits during their treatment, such as increased napping, developing nonsleep activities in bed, and even worrying about sleep. These habits developed during the illness period tend to make sleep problems worse instead of better later on.
In terms of fatigue during treatment, we think a lot of the problem has to do with the effects of treatment. Patients may become anemic and have changes in their nutritional intake, which contribute to fatigue. Perhaps most significantly, patients with cancer often perform less physical activity during treatment and are likely to be deconditioned when treatment is over.
An intriguing biologic explanation being pursued by several researchers suggests there may be a physiologic inflammatory response to having cancer, which causes lingering fatigue.
Vulnerable Groups
Why are women more susceptible to developing these issues than men?
We don’t know the answer to that for certain. In the general population, women are more likely to have insomnia than men. For cancer survivors, there are probably a variety of factors, including treatment-related hormonal changes that can cause menopausal symptoms like hot flashes and night sweats, which can interfere with sleep.
According to your study, adolescent and young adult survivors are also vulnerable to long-term insomnia following treatment. Do you know why?
This is another area of uncertainty. We know that AYAs may experience more anxiety and depression following a cancer diagnosis than older survivors. It is not clear why, though in our study we found that both medical late effects and anxiety were associated with insomnia in the AYA survivors. It may have to do with their stage in life. AYAs may be working, going to school, or dating and have more on their minds keeping them up at night than older adults who are in stable relationships and may be retired. AYAs may also have more demanding social and professional schedules, so it is harder to manage fatigue and sleep disturbances.
Finding Solutions
What can oncologists do to address the problem of fatigue and sleep disturbances in their patients? Are there screening methods to help detect these issues?
The most important solution to the problem is for oncologists simply to ask their patients about their sleep habits and start the conversation. We know from research data that patients usually do not tell their physicians about their sleep problems, so we have to ask them directly.4
ASCO and the NCCN have developed screening approaches for sleep and fatigue issues (see “Guidelines to Assess and Manage the Symptoms of Fatigue and Insomnia,” on page 63), and there are questions physicians can ask their patients to elicit the information—for example, do you have problems falling and staying asleep; how often does this occur during a week; and what is your current sleep schedule on a typical night?
Survivors may be reluctant to tell their physicians about their sleep and fatigue concerns because we have normalized the issue by telling them early in their diagnosis that these problems are common. If patients think that long-term symptoms of insomnia or fatigue are just a normal result from cancer treatment, they are not likely to raise the issue with their oncologist.
We need to differentiate our message, saying: “Yes, you will have sleep and fatigue problems, but in the next 3 months, it should get better. If it doesn’t, come back and tell me, because I can help you.”
Role of Palliative Care
How can palliative medicine help survivors overcome the problems of insomnia and fatigue?
Unfortunately, the solutions to these issues are usually not readily available at a cancer center or primary care practice, so they are difficult to implement. For insomnia, the front-line treatment is cognitive behavioral therapy, which is very effective, but most medical facilities do not have staff trained in behavioral therapy for sleep disorders. Compounding the problem is a national shortage of trained behavioral sleep therapists, so it is not easy to find these mental health professionals. Moreover, because insomnia is not a mental health disorder, health insurance does not always cover the treatment, making it even more difficult for survivors to get the relief they need.
In addition to asking survivors about any sleep and fatigue issues they may be experiencing, it is also important for health-care providers to give their patients a good medical evaluation to determine whether the problem is being caused by a treatable medical condition.— Christopher J. Recklitis, PhD, MPH
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There are other reliable interventions for insomnia, such as pharmacotherapy, but there are side effects with sleep medications, so they have to be used with caution. Maintaining a regular exercise routine can help with sleep and fatigue issues, and some studies have suggested that mindfulness meditation and yoga can help relieve cancer-related fatigue.
Insomnia and fatigue remain troubling problems for many survivors months and even years after treatment is completed, which speaks to the fact that they may be different problems than the symptoms that manifest immediately after a cancer diagnosis and treatment. In addition to asking survivors about any sleep and fatigue issues they may be experiencing, it is also important for health-care providers to give their patients a good medical evaluation to determine whether the problem is being caused by a treatable medical condition, such as anemia, a thyroid condition, or a hormonal problem.
There are remedies for many such disorders. We want to make sure we are doing everything we can to help survivors find relief from these symptoms. ■
Disclosure: Dr. Recklitis reported no potential conflicts of interest.
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