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Monday, November 28, 2016

With Jonas de Souza, MD, MBA, of The University of Chicago Medicine

By Sarah DiGiulio

Research has established (along with countless personal anecdotes from cancer patients across the U.S.) that financial toxicity is a growing problem in cancer care—and one that will limit the quality of care that U.S. oncologists can provide. One barrier standing in the way of addressing the problem is the fact that there's no good standardized way to measure just how burdened cancer patients actually are, explained Jonas de Souza, MD, MBA, a medical oncologist at the University of Chicago Medicine.

That's why he and his colleagues developed and tested a new tool—the COmprehensive Score for financial Toxicity (COST) measure. The results validating that the tool reliably measured patients' financial burden were recently published online ahead of print in Cancer (DOI: 10.1002/cncr.30369).

"We wanted to show that the tool we developed actually performs well in practice. For example, by using the tool, were we measuring quality of life, wealth, depression—or were we actually measuring financial concerns?" de Souza explained.

The researchers tested the tool on 236 patients from either the University of Chicago Medicine or the NorthShore UniversityHealth System who had been diagnosed with stage IV cancer. They compared the patients' COST scores to other health-related quality-of-life scores, which showed that

the COST tool measured financial distress independently of income or psycho-social distress. They also found the tool to be reliable and consistent.

Here's more from de Souza about how the tool works and what he believes oncologists everywhere should know about using it in their own practices.

1. How does the COST tool work and what makes it different from other financial toxicity measures?

"It is the result of the work of 4 years with cancer patients. The questions were elicited and ranked by cancer patients. For example, when asking about finances in general, one can ask whether patients 'decreased going out for dinner due to out-of-pocket costs.' For the cancer patients we interviewed, this type of question was just not that important. (Maybe because cancer patients develop other priorities or concerns related to their finances, such as the sense of losing control over their finances—e.g. 'I feel I have no choice about the amount of money I spend on care.')

"One difference [compared with other financial toxicity measures] is related to the validation process. In order to be sure we were not actually measuring something else—such as quality of life, income, or psychological distress—but likely a combination of all of those on the finances, we have to go directly to the patients and actually measure all of [those variables] at the same time.

"Finally, when doing this type of research, we are always worried about the type of population we are interviewing. For example, are we only interviewing well-off patients? Or are we only interviewing patients on clinical trials who actually may have fewer out-of-pocket costs than other patients? Are we only interviewing patients who are willing to discuss costs with their physicians and may be having financial issues?

"In validating the COST tool, we were careful to document and account in the analyses for patients who were on clinical trials, [as well as] patients who want and those who did not want to discuss costs. And we also reported on the patients who did not want to participate in the research, showing that we did not have any type of selection bias.

"For these reasons, I would say that the COST is a validated patient-reported outcome that actually measures financial concerns."

2. Is it feasible for this tool to be used widely across other institutions and by other oncologists?

"The main challenge is related to what to do after a patient is 'diagnosed' with financial toxicity. One must have systems in place and available ways to intervene.

"We have made the tool available for any provider at www.costofcancercare.org. The results of the tool will come out automatically, placing the patient in contact with others who also filled out the tool. This is available and free for patients and their providers.

"But, I would say that providers must have systems in place to help the cancer patients when using such a tool. Just telling the patient 'you have financial issues' is simply not acceptable and not enough. We have to help them."​

3. What should oncologists and oncology care providers know about financial toxicity and using this tool themselves?

"Financial toxicity is a side effect like any other. Providers should diagnose what is causing it and treat it accordingly.

"And [to those who] think that providers are not educated to talk about costs: [Providers] are educated to talk about side effects. Therefore, by considering [financial toxicity] a side effect, we can start a conversation with our patients about it.

"What would one do if a patient has pain? Find out the reason and prescribe something to ameliorate the pain. It is not different with financial toxicity. At times, it may be the out-of-pocket costs related to a treatment [that is problematic], while other times the loss of income related to a particular condition. These different causes will then trigger different interventions. For one patient, it may be help paying the medical bills, while for others, filling out social security papers or helping them return to work."

Thursday, November 10, 2016

With Antonella Surbone, MD, PhD, FACP, of New York University Medical School; and Paolo Tralongo, MD, of RAO Umberto I Hospital

By Sarah DiGiulo

Physician and cancer patient Fitzhugh Mullan is credited as being the first to use the term cancer "survivor" in a 1985 New England Journal of Medicine article, "Seasons of Survival: Reflections of a Physician with Cancer". The following year, the National Coalition for Cancer Survivorship (NCCS) extended that definition to include any patient who is alive who has ever been diagnosed with cancer. In a new article published in the Journal of Clinical Oncology, two oncologists argue that definition is outdated (2016;34: 3372-3374). "An additional gap in survivorship care and research remains unaddressed—identification of categories of cancer survivors on the basis of clinical and epidemiologic data to provide better tailored care to people who are now lumped together under the umbrella of cancer survivors," noted the paper's coauthors—Antonella Surbone, MD, PhD, FACP, Professor in the Division of Hematology and Medical Oncology at New York University Medical School; and Paolo Tralongo, MD, Chief of the Medical Oncology Division at RAO Umberto I Hospital.

1. What are the new categories of cancer survivors you propose?

SURBONE: "A.) Acute: Patients/survivors at first diagnosis or relapse, requiring acute intervention; B.) Chronic: Patients/survivors with cancer that slowly progresses or alternates phases of remission and relapse, often accompanied by acceptable quality of life; C.) Long-Term: Patients/survivors in clinical remission for long periods of time or for their entire life, remaining at risk for distant relapse or second tumors, and potentially carrying late treatment-related medical and psychosocial sequels; and D.) Cured: Patients/survivors, such as many patients with early stage (thyroid, cervical, testicular, or colon cancer) when their cancer-specific mortality and life expectancy after several years from diagnosis equals that of gender- and age-matched members of the general population.

"Such categorization, based on clinical, epidemiological, and risk-assessment data is not necessarily in antagonism with the inclusive definition of 'survivor' coined in 1985 by oncologist and patient Mullan to describe the multiple medical and psychosocial needs and concerns, as well as the shifts in interpersonal roles and dynamics, that accompany cancer patients from the time of diagnosis and later extended by the NCCS. Rather, it complements [the current definition] by allowing tailored survivorship care to be effectively and sensitively delivered to different survivors belonging to different categories by way of their actual disease and risk status."

2. Why is it so important to talk about renaming these categories now?

SURBONE: "A too broad and inclusive use of the term 'survivor' with no further categorization prevents us from tailoring survivorship care to the actual clinical situation of different survivors by grouping together a too-heterogeneous population of millions of people who have had a cancer diagnosis in their life. In the era of personalized, precision oncology, categorization provides support for risk-based care, which is increasingly possible due to the intense research novel risk assessment tools in many types of cancer.

"We propose a novel categorization of persons now broadly defined as 'cancer survivors' that can provide support to risk-based survivorship care, new clinical and organizational approaches, and improved follow-up and surveillance recommendations and guidelines."

TRALONGO: "The distinction that characterizes patients alive after a diagnosis of cancer is their heterogeneity of perspective and needs in relation to their clinical status. At the same time, this clinical heterogeneity corresponds to existential and experiential differences among survivors, which require new approaches to communication and education, to optimize both physical and psychosocial rehabilitation for each individual survivor.

"As different medical, rehabilitation, and psychosocial needs often remain unmet (particularly during long-term survivorship), the science and art of survivorship care requires a complex and articulated management, which is not helped—but rather hindered—by insisting on a generic definition of cancer 'survivors.'"

3. What would you want oncologists to know about these new categories and why they are needed?

SURBONE: "We wrote about something to which most practicing oncologists are already acquainted. They all apply some form of categorization to communicate effectively with their patients/survivors and their families, and to plan adequate follow-up, surveillance, and general health maintenance. What we did is break a taboo surrounding the term 'survivor' by making a concise case for the need to define and apply categories of cancer survivors based on clinical, epidemiological, and risk-assessment data.

"[These categories] allow us to provide better care to our patients/survivors as they actually go, not only through the different 'seasons of survival,' but [as they] are in different positions with respect to their disease status, risk of recurrence, late sequels, etc.

"Finding the right balance between making our patients/survivors aware of the implications of their category of cancer survivorship, through communication and clinical recommendations, and acknowledging the desire of many to feel cancer-free—or at least not over-medicalized—will remain a difficult task. Here the wisdom of practicing oncologists—who are skilled in the science, as well as in the human side of cancer care, and are aware of the importance of a good, ongoing relationship patient-doctor relationship—is key."

Tuesday, October 25, 2016

With Sriram Yennu, MD, MS, of MD Anderson Cancer Center Department of Palliative Care and Rehabilitation Medicine

By Sarah DiGiulio

While research shows there is a long way to go to successfully making palliative care part of standard care for patients with advanced cancer treated at cancer centers across the U.S., a new study reveals there is an even longer road ahead when it comes to making palliative care a global standard of cancer care.

The main goal of the new research was to look at the characteristics of patients receiving palliative care that were associated with a poor perception of curability, explained the study's lead author Sriram Yennu, MD, MS, Associate Professor in the Department of Palliative Care and Rehabilitation Medicine in the Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center, Houston.

"This was the first study that had the presentations from so many different continents," he said. The research was presented at this year's Palliative Care in Oncology Symposium and analyzed data from 1,390 patients with advanced cancer receiving palliative care from countries in North and South America, Europe, Asia, and Africa (Abstract 05). Among all of the patients, 49 percent reported that their cancer was curable, 60 percent perceived the goal of their therapy was "to get rid of their cancer," 79 percent perceived that the goal of their therapy was to "make them feel better," and 62 percent perceived they were relatively healthy.

Additional analysis revealed the patients from France and South Africa were more likely to have an accurate perception of the goal of their treatment, while patients from the Philippines, Brazil, and Jordan were more likely to have the misperception that the goal of their treatment was to cure their cancer. What's more: these regional differences were more significant in explaining the gaps in the patients' misperceptions about the curability of their cancers than age, gender, marital status, religion, and passive decision control preferences.

In an interview with Oncology Times, Yennu elaborated on what these findings mean and how the researchers plan to use the new data.

1. What would you say are the key findings from this research? And were you surprised by the findings?

"Many advanced cancer patients have confusion. They have poorly answered questions regarding their disease, treatment goals, and decision-making.

"The main goal [of our study] was to look at the patient characteristics associated with a poor perception of curability.

"We found there was a really significant role of culture in how patients perceive the curability of their cancer and the goals of their treatment.

"Patients belonging to countries such as the Philippines, Brazil, and Jordan had a poor perception of curability, and patients belonging to countries such as France and South Africa had more accurate perceptions of curability, compared to the United States. Interestingly, age and marital status, religion, and the way they are making decisions showed no significant [role] in patients' perception of curability.

"Education, which is a surrogate for socioeconomic status, [also played a role in patients' perception about their disease]. Patients who were highly educated (having a college or advanced degree) were more likely to have an accurate perception of the goals of their palliative care compared to others who had a high school education or less.

"But what exactly causes people to have these varying perceptions about their cancer and care is not clear from the results of this study. We need further studies to investigate what is modulating what."

2. What should practicing oncologists (in any country) know about this research?

"Communication—patient-physician communication—is a really critical aspect of what physicians do in the management of the disease. That includes reviewing different treatment regimens and the traditional approach, discourse about the disease, and the goals of therapy to help patients get the appropriate treatment.

"Asking a patient what they understand about the perception of curability is the first step physicians need to do to help that patient.

"Then they need to explain what the goals for therapy are. And once that is explained, we need to reiterate during subsequent visits all of those points."

3. How will you continue this research? What are the next steps?

"The questions that were answered were very straightforward. The next step would be doing some qualitative studies to understand why this is and developing a grounded, theoretical framework so that we can develop interventions using modalities like decisional aids and checklists to help patients have the correct perception of curability—and thereby help them make the right decisions."

Monday, October 10, 2016

With Heather Greenlee, ND, PHD, Epidemiologist at Columbia University

By Sarah DiGiulio

Obesity has long been known to complicate cancer treatment—and in specific cancers has been associated with worse prognoses. That's what led Heather Greenlee, ND, PhD, Assistant Professor in the Department of Epidemiology at the Mailman School of Public Health at Columbia University, New York, N.Y., and her colleagues to take a closer look at the prevalence of obesity among patients with a history of cancer, as well as how those rates have changed in recent years.

The researchers analyzed rates of obesity from 1997 to 2014 in 538,969 adults in the U.S. between 18 and 85 who were part of the National Health Interview Survey (NHIS) for a study that is now published online ahead of print (JCO DOI: 10.1200/JCO.2016.66.4391). Within the sample, 32,447 patients had survived cancer.

The data show obesity rates were higher for patients with cancer compared to individuals without a history of cancer, and obesity rates also increased quicker among the individuals who had had cancer. Prevalence of obesity had increased from 20.9 percent to 29.5 percent during that period for the individuals who had no history of cancer—and from 22.4 percent to 31.7 percent for the individuals who had had cancer.

The study coauthors explain why these findings are so significant in the paper: "It is well established that obesity can influence other medical conditions such as diabetes, heart disease, hypertension, and hypercholesterolemia, which may affect overall survival. In addition, specific chemotherapy agents have cardiac adverse effects that can be compounded by higher BMI. … Studies of breast, colon, and prostate cancer showed comorbid conditions increase 5-year all-cause and cancer-specific mortality. Therefore, it is important to consider obesity among cancer survivors not only in relation to cancer outcomes, but also in relation to other comorbid diseases."

Greenlee, the study's lead author, elaborated on how these findings should influence practice.

1. What is new about these findings that was not previously known about the prevalence of obesity among patients who had survived cancer?

"To our knowledge, this study is the first to use a nationally representative dataset to look at the trends over time. We examine annual data from 1997 to 2014.

"NHIS is a nationally representative dataset, which is an ongoing cross-sectional survey of health status, health care access, and behaviors of the U.S. population. We think that this dataset can provide a largely unbiased estimate of obesity among the sampled population.

"This paper clearly shows that obesity rates have been increasing over time for cancer survivors, that this rate is higher than the rate in the general populations, and that there are specific subgroups where the rates of obesity are the highest.

"Obesity is a growing public health issue. It is on a trajectory to get worse over time. And we need to develop effective programs and interventions to change the course of what is happening at a population level."

2. What should oncologists and oncology care providers know about the prevalence of obesity rates among their patients with cancer—as well as about the resources that are currently available to patients with cancer to treat, manage, and prevent obesity?

"Obesity among cancer survivors is common, and is a growing problem. There are subgroups of patients who are at particular risk of obesity, which puts the patients at risk for a multitude of chronic health issues. Clinicians need to work with their patients to effectively treat and manage obesity.

"Currently, there are not good insurance reimbursement streams for nutrition, physical activity, weight loss, and weight management programs for cancer survivors. If patients want to engage in these, they largely need to pay out of pocket, which is a huge barrier. We know that simply handing patients a booklet on food, physical activity, and weight goals is not enough to effectively change behaviors. Patients need education, skill building, and support to effectively make lasting changes—most people can't do this on their own."

3. So what is the next step? Who develops those interventions and how do they get implemented?

"Our research program is examining and testing strategies to prevent and manage obesity in the oncology setting. In my opinion, the main barrier to implementing effective weight management programs is financial resources.

"There is not going to be a 'one-size-fits-all' approach to manage obesity among cancer survivors. Survivors need to have options that work with their lives and their learning styles. They also likely need ongoing support. We are testing various methods that use in-person, written, and mobile health formats to understand which formats will work best."​

Wednesday, August 24, 2016

With Lauren Wallner, PhD, MPH, Assistant Professor of General Medicine at the University of Michigan Medical School

BY Sarah DiGiulio

Patients with cancer can get all sorts of information about what their diagnoses might mean and what their treatment options are online—via email, social media, and web-based support groups. But whether or not such communication helps patients make better decisions, or leaves patients happier with the decisions they do make, is a debated question. New research published online ahead of print in JAMA Oncology offers a few insights on the topic.

"Our study suggests that there continues to be an unmet need in patients for more decision-making support," explained the study's lead author Lauren Wallner, PhD, MPH, Assistant Professor of General Medicine at the University of Michigan Medical School.

Wallner and her colleagues looked at data from 2,460 women who had had a diagnosis of breast cancer who answered survey questions for the Surveillance, Epidemiology, and End Results registries of Georgia and Los Angeles County from July 2013 through September 2014 about their online communication use and their own appraisal of their treatment decision-making (doi:10.1001/jamaoncol.2016.2070). The data shows that the women who were more frequent users of online communication—including social media, online support groups, email, and text messages—more positively appraised their decision making about their cancer treatment compared with the women who did not report using methods of online communication.

Wallner told Oncology Times more about the research and how it might affect how oncologists help their patients make decisions about their treatment options.

1. Why did you and your colleagues decide to look at social media use among patients with breast cancer and how can practicing clinicians use findings like these?

"The use of online communication, particularly social media, has rapidly grown among cancer patients and survivors in recent years—particularly in breast cancer. Yet we knew very little about what types of patients are using it, why they are using it, and whether or not using it results in improved outcomes.

"We, therefore, asked women about their use and reasons for use to better understand whether social media and other online communication tools could be used to communicate and support patients through the treatment decision-making process and [their] ongoing care.

"While this was a large and diverse population-based sample of newly diagnosed patients with breast cancer in Los Angeles and Georgia, it is possible that these results may not be generalizable to patients in different geographic areas. Also, it is possible that use among patients with different types of cancer may differ."

2. Were you surprised by the findings? What was most significant?

"I was surprised that the use of online communication was not higher in this population, as breast cancer patients are a very engaged and active on social media sites like Twitter and Facebook. But in our large and diverse population, only 41 percent of women reported some frequent use of online communication and only 12 percent of them were using social media sites.

"While use of social media and other online tools in the context of cancer has been increasing in the past decade, and past studies have shown that, ours is the first (to my knowledge) to assess whether use of these online communication tools was associated with more positive appraisals of cancer treatment decision-making.

"Our study suggests that women newly diagnosed with breast cancer who frequently used online communication—such as email and social media—were more likely to deliberate longer about their breast cancer treatment decision and be more satisfied with their decision."

3. In the paper, you and your coauthors explain: "The presence of variation across age, race and education reinforces that barriers exist to incorporating these modalities broadly across patients with cancer. Additional research is needed before these modalities can be leveraged to improve patient care experiences." Could you elaborate on where your research showed these barriers exist?

"We found strong gradients in online communication use across age, race, and education. Older women, black and Latina women, and those with less education were less likely to be using these forms of online communication.

"These barriers in use need to be considered [to be able] to leverage social media and other forms of online communication to support women through their treatment decision and ongoing breast cancer care. At least in our sample, using these forms of communication would not currently reach all patients who need support."

Do You Have a Question?

Sarah DiGiulio
The “3 Questions on…” blog asks oncology’s thought leaders for their perspectives and takes on the field’s current news and controversies. Want to get answers to your questions? Add a comment or email Pam Tarapchak at pam.tarapchak@wolterskluwer.com or Catlin Nalley at catlin.nalley@wolterskluwer.com to suggest a topic for a future column. We want to hear from you!

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