Survey Tool Gauges Patient Treatment Preferences for Late-stage Cancer

Posted in GUMC Stories

With the vast arsenal of cancer treatments available now compared to just a few decades ago, one might assume that any patient would want to deploy any available option – that choosing to slow or cease medical treatment is akin to “giving up.”

But the reality is far more complex for many patients, particularly those with advanced-stage cancers whose instinct to keep fighting might give way to a desire for calm and comfort. For these patients and their loved ones, the goal of treatment may shift at some point from curing the disease to reducing symptoms and enhancing their quality of life – even if only incrementally.

This can be a difficult notion to accept today, when a growing pool of survivors—and a highly visible cancer advocacy community—underscore the importance of a fighting spirit and a “take-no-prisoners” mindset when facing down this disease.

But some research indicates that a protracted battle might not be best for everyone’s physical or emotional wellbeing, and patients must clearly understand the pros and cons of all options.

Understanding Treatment Decisions

Investigators at Georgetown Lombardi Comprehensive Cancer Center seek to shed more light on patients’ perceptions of the risks and benefits of treatment options. They have launched a study to gather preliminary data they hope eventually will help shape how patients and physicians make decisions about drug use for advanced cancers.

“Most people understand personalized medicine as genetics – using targeted therapies based on people’s molecular genetic profile. But personalized medicine is so much more than just genes; it also has to do with patient behavior, attitudes and preferences regarding their quality of life and their own treatment course,” says Alex Z. Fu, PhD, a health economist and associate professor at Georgetown Lombardi who is the lead investigator on the study.

Fu says the importance of engaging patients in meaningful conversations about how they want their own treatment to play out is largely overlooked in the field of cancer research. But he and his fellow researchers believe these conversations must become standard practice.

Funded by Georgetown Lombardi’s Otto J. Ruesch Center for the Cure of Gastrointestinal Cancers, the study is collaboration between the Ruesch Center and Georgetown Lombardi’s cancer prevention and control program.  Ruesch Center Director John L. Marshall, MD, who also leads Georgetown Lombardi’s hematology/oncology division, is a co-investigator on this study along with Fu and others.

There is plenty of evidence to support the idea that continuing a prescribed treatment is not always the best option,” Marshall says. “In fact, for advanced cancers, sometimes treatment can make a patient’s quality of life worse due to side effects and toxicity, with marginal benefits to survival.”

The Survey

Fu and colleagues plan to survey 100 patients who have received a diagnosis of late-stage colorectal cancer and who have undergone chemotherapy treatment. The survey will be paper-based initially—eventually it will be conducted on an iPad or a computer—and patients will be posed questions regarding risks, benefits and side effects associated with the treatments they have undergone.

Using nontechnical, patient-friendly language, the survey aims to present various outcomes that are associated with treatment for late-stage colorectal cancer in terms of survival benefit and the likelihood of side effects.  

“This project is timely as more new high-cost [metastatic colorectal cancer] agents enter the market, and health reform efforts are initiated that seek to control costs while preserving quality of care,” Fu says. “In the case of advanced cancer care, quality of care may heavily depend on patients selecting options that are aligned with their values and preferences.”

The patient preference data the researchers collect will guide their work in building one of the first clinical decision-making tools to focus on individualizing the use of high-cost treatment modalities.

Deepening Physician-Patient Engagement

Ultimately, the idea is to create a roadmap that clearly lays out possible benefits, drawbacks and risks of treatment options, but not to steer the patient towards any particular decision.

 This approach has as much utility for physicians as it does for patients, says Fu, noting that physicians tend to have an inherent bias towards their area of expertise.

“Surgeons tend to be inclined to do more surgeries. Radiation oncologists tend to do more radiation therapies. This is their training and they believe what they do is best for the patient, but they may not always be objective in that regard,” he says.

Clinical tools such as this survey that deepen the engagement between physician and patient set the stage for more meaningful interactions, and hopefully will lead to better outcomes and improved quality of life for all patients.

 “The idea is definitely not that we are giving up on treatment, but to understand that continuing active treatment is not something we should apply to every patient universally. There are risks and costs to patients, family and society that are not always well understood, and it’s important for us all to be thinking about this,” Fu says.

By Lauren Wolkoff, Georgetown Lombardi Communications