BY CHRISTINE KILGORE
Insight into cancer survivors' work lives—their ability to remain employed and the obstacles they face—is growing and informing survivorship care, but little has been known specifically about metastatic cancer and its impact on patients' ability to continue working when they need or want to.
A new study published in Cancer offers a window into this largely unexplored realm of life with metastatic cancer and patients' needs (2016;122:438-446). The study shows an estimated 44 percent of employed men and women continuing to work after a diagnosis of metastatic cancer, and a significant link between employment status and the severity of symptoms.
"We focus a great deal [for patients with metastatic cancer] on the events surrounding initial diagnosis of disease and the issues surrounding end of life, but in the meantime these patients are living their lives," said lead author Amye J. Tevaarwerk, MD, of the University of Wisconsin-Madison Carbone Cancer Center.
"They're a unique population, very distinct from patients with adjuvant cancer who are treated for cure and generally have an intense level of symptoms and side effects for a short period of time," she told OT. "Patients with metastatic cancer often need ongoing treatments that are constantly being changed…the situation is not very static for them. It's constantly in flux."
Increasingly, survival in the metastatic setting is measured in years rather than weeks or months. As survival duration lengthens, and as more treatments with lower toxicity become available, "this changes the face of how we treat and manage and care for these patients," said Tevaarwerk, a breast cancer oncologist at the UW Carbone Cancer Center.
Discussing employment and providing better symptom management and other interventions to promote the ability to work will become increasingly imperative, the authors said.
"The idea of working while having ongoing cancer and continuing treatment for years is a whole new phenomena," said Paul A. Glare, MD, of the Palliative Medicine Service at Memorial Sloan Kettering Cancer Center, who was asked to comment on the study. "There's little to nothing about this in the palliative care literature, the supportive care literature, or in [much of] the oncology literature."
Most studies that have been published to date on employment and metastatic cancer have included only metastatic breast cancer, Tevaarwerk said. A study of patients with locally recurrent or metastatic breast cancer, for instance, found that symptom severity (especially fatigue) and interference were significantly correlated with work productivity (Breast 2014;23:763-9).
And an online survey called "Silent Voices" published in 2006 by patient advocate Musa Mayer found that 47 percent of 618 patients with metastatic breast cancer continued to work full- or part-time and that 42 percent considered services about finances and employment to be important, Tervaarwerk and her colleagues noted in their paper.
The Symptom Burden
To learn more about employment patterns for metastatic cancer patients and factors associated with working or not working, the researchers performed a secondary analysis of the "Symptom Outcomes and Practice Patterns (SOAPP) study database of the ECOG-ACRIN Cancer Research Group.
The SOAPP study had enrolled more than 3,100 outpatients at 38 academic and community clinics in 2006-2008 with the primary objective of using patient self-reports to describe cancer symptoms and their degree of interference. The patients had breast, prostate, colon or lung cancer and were enrolled regardless of the time since diagnosis or the therapy they were receiving.
Tevaarwerk's analysis honed in on 668 SOAPP study participants who were 65 years or younger and had metastatic disease (defined in the study as "metastatic" or "local/regional and metastatic").
Based on the patients' responses to questions about employment stability, employment status, symptoms, and the degree to which symptoms interfered with work, Tevaarwerk and colleagues determined that 45 percent (302 of the 668) stopped working due to illness, and that overall, more than half of the metastatic population—58 percent—reported some change in employment due to illness.
On the flip side, 35 percent (236 of the 668) were working full- or part-time. And when the researchers discounted those patients who likely were not working at the time of the metastatic cancer diagnosis (approximately 20%), the percentage of patients working despite metastatic cancer came to 44 percent (Cancer 2016;122:438-46).
Surprisingly, disease characteristics—such as the time since metastatic diagnosis, the number of metastatic sites and location of metastatic disease, and treatment status—had no significant impact on employment status among the 668 patients.
What did matter in terms of continuing to work were non-Hispanic White ethnicity/race, better performance status, treatment with hormonal therapy, and lower symptom interference. Each of these factors was significantly associated with continued employment in the study's multivariate analysis.
"Importantly for oncologists counseling patients regarding the sequence of therapy, hormone therapy was associated with positive employment outcomes," the investigators wrote. "Even more importantly, the participants receiving chemotherapy, radiation therapy, and/or immunotherapy did not fare worse than those receiving no therapy at all; this was true even after we had controlled for [whether patients were physically fit enough to undergo such treatment]."
For Tevaarwerk, the significant association between symptom burden and employment (the links between a high burden of symptoms and no longer working, and between a lower symptom burden and continuing to work) is motivating. "Symptom burden is potentially modifiable. We can't change everything about having metastatic cancer, but we can treat symptoms like fatigue and pain and drowsiness," she told OT.
"We know there are effective interventions, but for whatever reason, there's some disconnect between knowing they exist, and bringing them fully to bear," she said.
Fatigue, drowsiness, memory difficulties, and numbness/tingling were the symptoms most commonly associated in this study with the discontinuation of work.
Treatment for drowsiness due to opiates, for instance, could include the use of methylphenidate, antidementia medications, or physical therapy and exercise, the investigators wrote. And earlier incorporation of palliative care services to better control symptoms may also be helpful, Tevaarwerk told OT.
Finding New Models
"We need to explore different processes for helping patients," perhaps starting with approaches that address employment specifically and separately from broader quality of life issues, Tevaarwerk said.
In addition to symptom management, an employment-sensitive approach to patient care may involve treatment decisions that factor in side effects, treatment duration, and other issues specifically as they affect the ability to stably work. It could also potentially involve expanding clinic hours for treatment and helping patients identify ergonomic strategies like repositioning the keyboard and mouse to help cope with lymphedema or minimize shoulder stress.
"We've found that [in the adjuvant setting], there are things that can be done in the workplace to minimize physical and cognitive stress," said Mary E. Sesto, PhD, also of the University of Wisconsin-Madison and an author of the paper.
A web-based decision-support tool developed at UW-Madison to address symptom management and ergonomic strategies in women with breast cancer is showing encouraging results in ongoing research. But to apply such a tool to the metastatic population, "we need to know more about what patients [with metastatic cancer] need from a work perspective," Sesto said. "What can we do to support them in making employment and disability decisions and what can we do to help them stay at work?"
As it is in the broader survivorship realm, psychosocial support that is attentive to employment will also likely be an important element of improved metastatic cancer care, sources told OT.
For many patients with metastatic cancer, working may be necessary for insurance and financial reasons. Recent studies, in fact, have documented a significant financial burden faced by cancer survivors well after their diagnosis and treatment (OT 12/25/15).
For others, continuing to work may bring a sense of normalcy. When Glare and his colleagues administered a cross-sectional survey of more than 100 patients who were referred by oncologists at Memorial Sloan Kettering to one of two pain and palliative care clinics at the center, they found that almost half of the patients were still working.
The majority said that work was important to their identity and helped them "feel normal." More than half said they felt they were "beating the cancer" by continuing to work. (Patients in the study self-reported their cancer-status, but undoubtedly most had locally advanced or metastatic cancer, Glare said.)
"I was astounded by how many people said they wished they'd be able to work more than they were able to do," said Glare, who presented his findings at a 2014 ASCO-sponsored symposium on palliative care in oncology.
Pain management was the most significant concern. "A lot of patients had a problem taking pain medication. They need to be monitored but don't want to be coming into the clinics all the time, and they're worried about the side effects," he said.
It's possible, he added, that patients with metastatic cancer would benefit not only from early palliative care, but from dedicated interdisciplinary teams that support patients' desire and ability to work.