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.

 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.

Are oncology practitioners more aware of the importance of addressing sleep disorders in 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.

What sleep disorders are more common in this patient/survivor population?

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.

How can nurses help patients to get better sleep?

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.

What are some of the behavior modifications to address insomnia that nurses can recommend?

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?”

What role do pharmacologic interventions play in addressing patients’ sleep difficulties?

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.

You have conducted research in the area of cognitive behavioral therapy for insomnia (CBTI).

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.

. 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.

. 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.

 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 

. 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.

What resources would you suggest for nurses who want to help patients improve their sleep?

 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.

Are patients generally receptive and adherent to CBTI? Are they reluctant to mention their sleep challenges to providers?

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.

The bigger cancer centers are more likely to have more resources to support patients with their sleep challenges. What would you suggest for nurses who practice in smaller community settings?

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 

. Patients or survivors can try the strategies and report back to nurses on how it’s working out.

What other research are you working on currently?

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. 

Articles

Cover Story

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.

Helping Patients to Get More Sleep: Talking With Ellyn Matthews, PhD, RN

The topic of spirituality has become increasingly relevant in oncology nursing dialogue, research, and practice, with an eye toward how best to assess and identify patients’ spiritual needs and then develop innovative clinical interventions to effectively address those needs.

Research and dialogue around spiritual issues in clinical practice continues to grow, yet as Koenig rightly points out, “It is challenging to come up with a common definition for spirituality, especially one that fulfills the criteria necessary for research purposes."

 The latest literature related to oncology nursing and spirituality, for example, consistently acknowledges the vagueness that persists in understanding and defining the concept. Peteet and Balboni note that "spirituality remains difficult to precisely define and measure, but there is general agreement that it refers to a connection with a larger reality."

In the clinical setting, the term spirituality is descriptive of a wide range of experiences, is less differentiated than religion, and typically refers to something positive. Therefore, thinking through spiritually in the context of oncology nursing should begin with research that gives attention to the identification of the patient’s spiritual needs.

Oncology Patient Spiritual Needs Attending to and caring for the spiritual needs of patients has always been part of nursing theory and practice; however, this spiritual focus was implicit and not explicitly addressed. Now, research suggests that patients want more involvement from nurses and physicians in relationship to their spiritual domains.

Along these lines, researchers tested the practicality and usefulness of a short (15 to 30—minute) clinical interview to assess the spiritual needs of 30 oncology patients, and they found that patients with cancer wanted their healthcare providers to be interested in their spiritual orientation.

 The study concluded that an interest in and an assessment of cancer patients' spirituality proved beneficial to patients, suggesting perhaps that the intervention of the assessment itself may result in improved patient satisfaction.

Similarly, Nixon and Narayanasamy confirmed the clear need for healthcare professionals to provide spiritual care—in this instance, exploring the spiritual needs of neuro-oncology patients from the patient perspective. They identified several spiritual needs or issues among the patients, including supportive family relationships, emotional support, loneliness, religious needs, need to talk, reassurance, anxiety, solitude, denial, plans for the future, thoughts about the meaning of life, end-of-life decisions, and discussion of beliefs.

Although several studies have identified and highlighted similar spiritual needs of patients, the literature is also replete with studies that concluded that not all oncology patients have spiritual needs. These claims are not surprising and further support the significance of assessment in thinking about spiritual care.

Embedded in thinking through spirituality is the notion of assessment. Spiritual assessment or spiritual history-taking is a broad concept used to describe the process by which patient spiritual needs are identified for the purpose of developing the care plan.

While assessment is not new to the nursing process, a literature review reveals some shifts in the approach to assessment. For instance, numerous original studies have explored the methods used to obtain spiritual histories. Of particular interest is the trend from early discussions of spiritual assessment using checklists of 5 to 7 items, to a narrative approach that can identify spiritual needs by listening to the cancer patient’s story.

Notably, these studies argued for replacing the more common practice of the nurse administering a brief spiritual screening or inventory, with a more in-depth exploration of the patients' spiritual history gleaned through listening to the patients' story. However, an important question emerged: How adequately prepared are oncology nurses to deal with deep spiritual issues that may surface during a narrative assessment?

A number of innovative clinical interventions have been tested to measure the effect of spiritual interventions on overall quality of life in oncology patients, including one by Piderman et al.

 This larger, multidisciplinary, supportive care intervention is aimed at improving all domains of quality of life and involved a series of support group meetings and discussions.

The spiritual component of the intervention focused on asking only two open-ended questions related to (1) life review, meaning and purpose, and (2) blessings and burdens. A key finding was how easily the open-ended prompts used in the spiritual intervention facilitated spiritual conversation on these topics with patients. This suggests that it is feasible to explore spiritual topics with patients with very brief invitations for discussion.

It is clear that many oncology professionals—nurses and physicians&mdash;may need additional training and support to develop comfort and self-confidence in raising the subject of spiritual wellbeing with patients. Recent evidence of both the importance of these discussions to patients and the relatively simple prompts needed to open the conversation, suggests this should be a priority among all health professionals. Having discussions with hospital clergy and obtaining continuing education in this area can be valuable steps in improving our ability to meet the spiritual needs of our patients.

Darcia Simpson is a member of the Oncology & Palliative Care Program at the Frances Payne Bolton School of Nursing at Case Western Reserve University in Cleveland, Ohio.

Koenig HG. Spirituality and Health Research: Methods, Measurements, Statistics, and Resources. West Conshohocken, PA: Templeton Foundation Press; 2011:197.

Peteet JR, Balboni MJ. Spirituality and religion in oncology. CA: Cancer 

Frick E, Riedner C, Fegg MJ, Hauf S, Borasio GD. A clinical interview assessing cancer patients’ spiritual needs and preferences. 

Nixon A, Narayanasamy A. The spiritual needs of neuro-oncology patients from patients’ perspective. 

Piderman, KM, Johnson, ME, Frost, MH, et al. Spiritual quality of life in advanced cancer patients receiving radiation therapy. 

Partner Perspectives

The topic of spirituality has become increasingly relevant in oncology nursing dialogue, research, and practice, with an eye toward how best to assess and identify patients’ spiritual needs and then develop innovative clinical interventions to effectively address those needs. 

Spirituality in Oncology Care: Patient Priorities and Innovative Interventions

The FDA has been very busy lately granting approvals for a host of new anticancer agents, drug combinations, and indications. This is truly heartening news for the oncology community, and there’s more to come.

Yet as nurses know well, certain side effects of treatment like cognitive complaints and peripheral neuropathy can be stubbornly persistent, and for a sizeable subset of survivors, these symptoms negatively impact their quality of life long after treatment ends.

Fortunately, solutions are available for one of the more common treatment-related adverse events—chemotherapy-induced nausea and vomiting (CINV)&mdash;and new options have been recently approved by the FDA. Another welcome development is FDA clearance of the first scalp cooling system which has been shown to significantly reduce the hair loss which can accompany anticancer treatment.

Unfortunately, some patients and survivors remain reluctant to discuss certain symptoms with their clinicians in the erroneous belief that side effects like CINV and insomnia are just “something that I have to live with, because I have cancer.” Nurses know better, and as our coverage this month shows, asking patients simple questions about how they are sleeping, or probing any worries over expected nausea from chemotherapy, can lead to remedies— pharmacologic and behavioral&mdash;that can improve their quality of life during and after treatment.

Many of the insights we share in this issue from side effect management experts emanate from our team coverage of last month’s first-ever Cancer Survivorship Symposium, a unique collaboration of oncology and primary healthcare professionals, all working toward the same goal: crafting better models of coordinated and individualized care to improve the quality of life for cancer survivors. This month, we also welcome a new member of our Strategic Alliance Partnership program, the Johns Hopkins School of Nursing, a global leader in nursing and healthcare and one of the nation’s top-ranked accredited nursing school programs. In this issue, Associate Professor Jennifer Wenzel, PhD, RN, sheds light on the critical need to increase minority participation in clinical trials.

Have you visited our website recently? Nursing.OncLive.com has a new look, showcasing more of the latest news on the homepage and spotlighting articles from our growing cadre of nurse contributors. If you would like to use this forum to share your insights periodically with your peers on all things oncology nursing, please email Lauren Green (

) for more information and to share your ideas and suggestions.

From the Chairman

The FDA has been very busy lately granting approvals for a host of new anticancer agents, drug combinations, and indications. 

Improving Quality of Life Throughout the Care Continuum

Associate Professor in the Department of Acute and Chronic Care

Racial and ethnic minority populations in the United States continue to experience higher cancer mortality rates than those among non-minority populations. A number of variables contribute to this alarming gap, but the lack of representation in clinical trials is a clearly recognized factor.

Clinical trials are crucial in the development of new cancer therapies, yet participation in these trials remains low overall, and many populations are underrepresented, leading to health disparities. The fix is easy, in theory: ensure that more minorities participate in clinical trials. Of course, the solution has been neither simple nor completely implemented.

Just as a clinical trial that features men exclusively could reach conclusions on treatments that do not work as well for women, a study that doesn’t include minorities may result in treatments that either leave them out or have unintended consequences. Add to this the nature of clinical trials, in which participants are monitored closely and may have improved treatment outcomes, and minorities are missing out on potentially lifesaving interventions.

From a scientific perspective, underrepresentation limits the ability to generate hypotheses about differences in outcomes or to conduct meaningful subgroup analyses in order to detect treatment differences between groups. This results in unfair distribution of the potential benefits and risks of trial participation and decreases generalizability of research findings.

Enrolling participants presents a constant challenge. For example, only 3% to 5% of all adult patients with cancer participate in clinical trials, and fewer than 10% are racial and ethnic minorities. African-American men are especially unlikely to enroll.

Numerous factors contribute to decreased clinical trial participation among racial and ethnic minorities. Medical distrust is the most frequently reported barrier.

Research mistrust or even wariness based on historical ethical research misconduct cannot be discounted. Fallout from abuses incurred within the Tuskegee Institute syphilis research on black men in the 1930s persists even today. Sadly, past research abuses continue to be uncovered (ie, mustard gas experiments related to veterans that were conducted disproportionately with racial/ethnic minorities) and can result in higher levels of skepticism and decreased motivation to participate in trials. Finally, strict enrollment criteria and retention concerns may result in a bias against the participation of elderly patients or individuals with multiple comorbidities, groups already known to be vulnerable within our healthcare system. Because certain racial/ethnic minorities are at higher risk for multiple comorbidities, they may even be excluded from trial participation, compounding existing disparities in research outcomes and application.

These research participation concerns may be offset by provider recommendations (especially from providers with whom patients have a longstanding relationship), which is known to be an important factor in patients’ participation. When opportunities are properly presented, minority patients may perceive invitations to participate as an important means to overcome existing disparities.

Despite numerous studies on barriers to participation, little progress has been made in terms of minority participation in clinical trials. Few interventions to address challenges to clinical trial accrual in the context of racial/ethnic representation have been rigorously conducted and evaluated. More multisite studies, as well as efforts to address minority accrual across treatment centers and regions, should continue to be rigorously implemented and evaluated. Recruitment of all research participants is likely to become increasingly challenging, however, as current trends toward targeted therapy and personalized medicine necessitate larger numbers of trial participants.

EMPaCT—Enhancing Minority Participation in Clinical Trials

 aims to increase recruitment and retention of racial/ethnic minorities into therapeutic clinical trials with the ultimate goal of reducing cancer-related health disparities. This initiative of the National Institute on Minority Health and Health Disparities provides training courses, materials, and other resources for healthcare practitioners to help them in their efforts to overcome barriers to minority enrollment in clinical trials. For more information, visit 

Without creativity, sensitivity, and ongoing partnerships with minority communities and stakeholders, low clinical trial enrollment among minority groups will continue to have both upstream and downstream effects on the national healthcare system. In addition to diminishing the evidence base for practice, a tremendous amount of research resources will be wasted without realizing the intended benefit for all citizens, thereby straining a system that is already highly resource-intensive despite trailing globally on many health indicators. Solving the problem of low minority accrual to clinical trials is an important step to ensuring improved health outcomes for all.

Braunstein JB, Sherber NS, Schulman SP, et al. Race, medical researcher distrust, perceived harm, and willingness to participate in cardiovascular prevention trials. 

Baquet CR, Ellison GL, Mishra SI. Analysis of Maryland cancer patient participation in national cancer institute-supported cancer treatment clinical trials. 

Colon-Otero G, Smallridge RC, Solberg LA, et al. Disparities in participation in cancer clinical trials in the united states : A symptom of a healthcare system in crisis. 

Corbie-Smith G. Interpretation of ‘appropriate’ minority inclusion in clinical research. 

Djulbegovic B, Kumar A, Soares HP, et al. Treatment success in cancer: New cancer treatment successes identified in phase 3 randomized controlled trials conducted by the National Cancer Institute—sponsored cooperative oncology groups, 1955 to 2006. 

Du W, Gadgeel SM, Simon MS. Predictors of enrollment in lung cancer clinical trials. 

Durant RW, Legedza AT, Marcantonio ER, et al. Different types of distrust in clinical research among whites and African Americans. 

Evans KR, Lewis MJ, Hudson SV. The role of health literacy on African American and Hispanic/Latino perspectives on cancer clinical trials. 

Lai GY, Gary TL, Tilburt J, et al. Effectiveness of strategies to recruit underrepresented populations into cancer clinical trials. 

Racial and ethnic minority populations in the United States continue to experience higher cancer mortality rates than those among non-minority populations.

Boosting Minority Participation in Clinical Trials

For patients about to start chemotherapy, worry over chemotherapy-induced nausea and vomiting (CINV) is common, and unfortunately, many are unaware that it can be prevented, even in patients receiving the more highly emetogenic chemotherapy (HEC) regimens.

New agents and formulations have been added to the CINV armamentarium; however, unless patients are encouraged to discuss the problem with their clinicians, their CINV may go unmanaged, causing even greater problems down the road.

“Patients come in with a perspective, that I feel like I have to change,” noted Brandi Riber, RN, a chemotherapy nurse with Florida Cancer Specialists in Fort Myers. “Patients come in expecting, ‘I am going to get chemo, I am going to be sick, I am going to throw up,’ but that’s not the case.”

A recent survey of 400 adult patients receiving chemotherapy, conducted by Wakefield Research on behalf of the Hematology/Oncology Pharmacy Association (HOPA) and Eisai, Inc, bears this out, finding that 83% of patients may be experiencing CINV unnecessarily.

Riber, a breast cancer survivor herself, understands only too well the fear patients feel about CINV—a fear which may intensify when they are at home, away from the security of their healthcare team: “I was a nurse when I started my treatment, and I still was fearful.”

“When delayed CINV is not prevented,” Riber continued, “the patient can experience a lot more nausea and vomiting, and this leads to further complications that we have to manage.”

More than half of patients undergoing emetogenic chemotherapy may experience delayed-phase CINV, (occurring 25-120 hours after chemotherapy initiation), even when they are prescribed a 5-HT3 receptor anatagonist and a corticosteroid.

Last September, the FDA approved single-dose rolapitant (Varubi; Tesaro), for use in combination with other antiemetic agents in adults for the prevention of delayed-phase nausea and vomiting associated with initial and repeat courses of emetogenic chemotherapy, including, but not limited to HEC.

The FDA’s approval was based on data from several phase III trials of rolapitant involving more than 2500 patients receiving various emetogenic chemotherapy agents, including cisplatin, carboplatin, and anthracycline/cyclophosphamide—based regimens.

The data showed that adding rolapitant to a 5-HT3 antagonist and dexamethasone was superior to those agents alone in preventing delayed CINV in patients receiving chemotherapy regimens that were moderately or highly emetogenic.

Rolapitant is administered as a single dose (two, 90-mg tablets) prior to chemotherapy in combination with a 5-HT3 receptor antagonist and dexamethasone.

“I’ve found that patients are compliant with it,” said Riber. “We’ve had patients who have had great success in decreasing their nausea during a really highly emetogenic regimen.”

In July of last year, the FDA granted the 5-HT3 antagonist granisetron (Heron Therapeutics) a priority review designation with a decision expected shortly, and on February 4 of this year, fosaprepitant dimeglumine (Emend for injection; Merck) received FDA approval as a single dose in combination with other antiemetic agents for the prevention of delayed CINV following moderately emetogenic chemotherapy (MEC).

The FDA approval is primarily based on the phase III MK-0517-031 study, in which adding single-dose fosaprepitant to ondansetron and dexamethasone induced a complete response (CR) during the delayed phase in nearly 80% of patients receiving MEC. The CR rate with fosaprepitant was about 15% higher than the rate with ondansetron and dexamethasone alone.

Experts agree that even with additional treatments, educating patients and making sure that they feel comfortable discussing CINV with their healthcare team is essential.

HOPA President Scott Soefje, PharmD, MBA, BCOP, noted that although the research literature indicates that CINV should be controlled in 80% to 90% of patients, what he found so surprising about the patient survey was that “even in this day and age, patients thought they had to live with nausea and vomiting if they had it. When 83% of patients say ‘that is just something that I thought I had to live with,’ to me that’s concerning and troubling—we’re not doing a very good job of getting the message out there.”

“Then what we found as we dug deeper… not only were patients suffering with [CINV], they were not telling practitioners ... they are suffering in silence,” Soefje continued.

With that in mind, HOPA, in conjunction with Eisai, is introducing the “Time to Talk CINV” campaign to develop new resources for pharmacists to help educate patients and their caregivers about CINV prevention. Soefje said that the tools developed through this campaign, which will launch formally at the HOPA annual meeting this March, will be valuable to physicians and nurses as well.

Soefje explained that physicians, nurses, and pharmacists form the triad that really impacts patient care:

“We believe that the team approach brings different aspects. If you talk to nurses and pharmacists, you will hear stories constantly about how a patient will tell a nurse or pharmacist something that they would never tell their doctor.”

“The literature will tell you that a patient with cancer hears somewhere between 10 and 30 percent of what they’re told in any session,” Soefje continued, a finding that underscores the need for all three practitioners to drive the patient education messages about CINV home:

“You put all that together, and a lot of times, you’ll have a patient who is very well-informed.”

Riber concurs: “Patients need that village to help them through it.”

Talking CINV: Expanded Treatment Options Can Offer Relief

 Returning to work following cancer treatment is a topic that is extensively covered on cancer survivorship webpages. Working while undergoing cancer treatment has not received as much attention, and even less attention has been given to people who continue working after being diagnosed with metastatic cancer. In most cases, people with metastatic disease have a limited life expectancy and often are advised to leave their jobs so that they can focus on treatment and activities other than work, such as travel and spending more time with friends and family.

A research team from the University of Wisconsin-Madison analyzed the Eastern Cooperative Oncology Group’s “Symptom Outcomes and Practice Patterns (SOAPP)” study data to identify factors associated with employment changes among people with metastatic cancer. A surprising finding was that among the 668 people in the analysis, 236 (35%) worked full- or part-time. Better performance status and non-Hispanic white ethnicity/race were associated with continuing to work despite a metastatic cancer diagnosis. Interestingly, the type of cancer, type of cancer treatment, and time since diagnosis did not affect employment status.

The researchers noted that their data raise a number of unique survivorship issues that have previously been overlooked. Whether working by choice, necessity, or both, working provides social interaction and support, and may serve as a distraction from cancer symptom burden. A high burden of symptoms was the most likely factor that caused people to leave their jobs. Fatigue, drowsiness, memory and cognitive impairment, and numbness were the most common symptoms that prompted termination of employment.

These study findings remind us all to not assume that people diagnosed with metastatic disease will want to quit work, and instead are a call to action to reframe our initial assessment. We need to ask patients with newly diagnosed metastatic disease how they view and value their work, including work around the home. We also need to discuss the expected course of disease and how their jobs could be impacted. For those who choose or need to continue working, we need to identify ways to manage treatment- and disease-related symptoms. We also need to support our patients emotionally, especially those who closely identify themselves with their work. Helping people find meaning in their lives is critical during this time.

In addition, from a practical standpoint, we need to examine how our treatment facilities are supporting (or not supporting) people who continue to work during treatment. This not only includes the people with metastatic disease, but anyone undergoing cancer treatment who continues to work. Although many prefer to receive treatment on a Friday afternoon, far too many treatment facilities have policies that prohibit treatment after a set time, such as 2 PM. Very few have treatment appointments after work on Friday evening—a time that many working people prefer.

Our patients also may have questions about workplace rights and discrimination, which is a topic that few nurses or even physicians are able to accurately and comprehensively address. Referral to social services is helpful, but these services may not be available in some practice settings, such as small office practices. There is information available online through 

 the American Cancer Society, LIVESTRONG, and Equal Employment Opportunity Commission websites. Providing patients with information about their legal rights empowers them to make informed decisions about work-related questions and concerns.

These new research findings that suggest at least one-third of our patients with metastatic disease continue to work merit changes in the way in which we assess our patients, when we administer treatment, and how we support these patients. We must not assume that the diagnosis of metastatic disease is reason enough to advise patients to stop working.

 Tevaarwerk AJ, Lee J, Terhaar A, et al. Working after a metastatic cancer diagnosis: factors affecting employment in the metastatic setting from ECOG-ACRIN’s Symptoms Outcomes and Practice Patterns study. 

Lisa Schulmeister, MN, RN, ACNS-BC, FAAN is an oncology nursing consultant and editor-in-chief of 

Nurse's Notes

New research findings that suggest at least one-third of our patients with metastatic disease continue to work merit changes in the way in which we assess our patients.

Managing Work and Metastatic Disease

As those of us immersed in our roles as oncology nurse navigators know only too well, each day holds the potential to be filled with unexpected—and sometimes amazing&mdash;events. Last November, a nurse from our hospital’s Physician Referral line called me to say she had just spoken with an extremely emotional patient who wanted to see one of the gynecologic oncologists at University Gynecologic Oncology (UGO), a Northside Hospital Cancer Institute—affiliated practice. More precisely, she said that this patient was hysterically crying and insisting she be seen immediately.

I called this patient (who I will call Sally), and indeed, she was screaming and intermittently crying, as she implored me to get her the very first available appointment with one of the oncologists at UGO, “to get this cancer out of me right now!”

I immediately secured the first available appointment and then assiduously worked with the practice nurses and schedulers to have all diagnostic tests completed. Each time I spoke to Sally regarding her tests, I heard a consistently hysterical diatribe. She was filled with panic and massive anxiety at the probability of an ovarian cancer diagnosis.

As usual, I met Sally and her husband at that first appointment, and while in the waiting room, she went up to each patient and boldly solicited their experience with the practice and about their own ovarian cancer diagnosis.

One of the ladies who had been on and off treatment for 11 years offered comforting words to Sally and said that her ovarian cancer had simply become, for her, a “way of life.” Hearing that, Sally began to scream and sob, yelling. ”Oh my God, it comes back? It just stays in your body forever?” This went on for several minutes, and we brought her back to the little family room and encouraged her to have some calming herbal tea.

As Sally began her chemotherapy, she experienced the usual side effects of queasiness, constipation, and fatigue. She called me as well as the practice chemo coordinator numerous times each day—usually crying and filled with apprehension.

The wig she had obsessed about (in terms of “looking fake”) actually became a lovely enhancement to her appearance. The pre-chemo angst was blunted by Benadryl as well as my constant visits to her each cycle where I went over her side effects, reassuring her about the normalcy of the symptoms she was describing.

Her husband would immediately jump up when he saw me and vanish from the infusion suite, and Sally would implore me tearfully not to abandon her as the dreaded chemo infused.

Time passed, and Sally relaxed somewhat (possibly assisted by the chemo pre-meds) and on this day when I went to see her, and after we chatted for a while, she suddenly looked at me and laughed. She said she had decided she would love to have my job. She said, laughing delightedly, “You have the easiest job in this hospital. You just walk around like a social butterfly, making charming conversation with everyone. I’d like to be paid for what you do, and I’m sure you’re paid very well.”

I smiled, but I was also relatively peeved, and I wound my way back to my office experiencing more than a bit of self-righteous annoyance—reflecting on my work with our patients and their loved ones as they go through the generally dismal trajectory of ovarian cancer. I thought about watching friends made in the chemo suite relapse and die and of the hospices and funerals I’ve attended. I almost had to sit down on the staircase and cry for all those beautiful women I’ve had the humbling privilege to help navigate this surreal experience, only to die a very ugly death with their families as helpless attendants.

And then, at the end of the day, when I got into my car, I suddenly started to laugh, more at myself than anything else. Our Sally—she, who once couldn’t compose herself as a newly diagnosed ovarian cancer patient&mdash;had actually recalibrated to restore her sardonic sense of humor and observe my role through her perspective.

Sally was in the process of reclaiming her individuality. I had been successful in helping her to navigate her way back to her sense of self. Her impression of my work didn’t meet my lofty standards and admittedly, stung my pride, but judging from her gleeful and ever-so-charming southern belle smile, the exchange definitely proved a success for her, and for the very first time, her husband (who remained by her side this particular day) laughed out loud.

Thus we learn, each day in our role as nurse navigators, that we do not paint the portrait: we provide the supportive and accepting frame for our patients to fill in with their own colors. And for those of us who chose to do this work, we understand why a sense of humor is so crucial.

Penny Daugherty is an oncology nurse navigator specializing in gynecologic oncology and multiple myeloma at the Northside Hospital Cancer Institute in Atlanta.

Nurse Navigators

As those of us immersed in our roles as oncology nurse navigators know only too well, each day holds the potential to be filled with unexpected