Website educates cancer patients about the costs of care

Cancer, all by itself, is bad enough. Although cancer treatment, especially chemotherapy, has become much gentler than it was a decade ago, most interventions still carry significant risks and side effects.

Recently, many physicians have focused on a different sort of hazard that they call “financial toxicity.” Along with the distress of a cancer diagnosis and the discomforts of treatment, patients increasingly have to deal with the cost, anxiety and loss of confidence inspired by large, unpredictable expenses, often compounded by decreased ability to work.

A team led by Jonas de Souza, MD, a head-and-neck cancer specialist at the University of Chicago Medicine, has developed the first patient-oriented website devoted to helping cancer patients understand and cope with financial toxicity (FT). Their goal is to increase awareness of this side effect prior to and during medical treatment so patients know what to expect and can better understand how costs impact them and their families.

Jonas de Souza, MD

“Our ultimate goal is to incorporate understanding of financial toxicity into the treatment paradigm,” de Souza said. “This brings us one small step closer to truly personalized and patient-centered cancer care.”

The timing is right. The cost of health care in the United States is rising faster than the gross domestic product. The cost of cancer care is rising faster than the cost of health care in general, and the cost of new cancer drugs is rising faster than the cost of overall cancer care.

The new immunotherapy drugs, for example, have produced high response rates and durable remissions, but these agents are also quite expensive. A typical course of therapy can cost $120,000 to $150,000. One recent survey found that the number of patients taking at least $100,000 worth of medication annually nearly tripled last year, to 139,000 Americans. About one-third of those patients were taking cancer medications.

How widespread is FT?

  • A survey by the Centers for Disease Control found that roughly one in three families reported significant financial burden as a consequence of medical care.
  • One in three patients with non-metastatic breast cancer reported a decline in financial status in the period following their initial diagnosis. A significant minority of patients reported out-of-pocket spending of more than $5,000 per year.
  • One out of six chronic myeloid leukemia patients with higher copayments stopped taking a very effective but costly treatment—drugs such as Gleevec, a tyrosine kinase inhibitor—during the first 180 days of treatment.
  • Patients report that financial problems have a greater effect on quality of life than age, race, education, insurance status or family income.

What can patients and doctors do about FT?

You can’t study what you can’t measure. Last summer, a team of University of Chicago cancer specialists developed the first tool—a set of 11 questions, assembled and refined from conversations with more than 150 patients with advanced cancer—to assess a patient’s risk for, and ability to tolerate, financial stress. The researchers named their patient-reported outcome measure COST (COmprehensive Score for financial Toxicity). It is available on the website, enabling patients to assess their own financial toxicity.

Sample statements from the Comprehensive Score for Financial Toxicity (COST) tool questionnaire.

Sample statements from the Comprehensive Score for Financial Toxicity (COST) tool questionnaire.

The site also includes lists of foundations and societies that than help patients with information, guidance, and in some cases, financial assistance. It includes a long list—still in progress—of cancer medications, plus ways to get involved in research (email us at

“Few physicians discuss this increasingly significant side effect with their patients,” said de Souza. “Physicians aren’t trained to do this. It makes them feel uncomfortable,” he said. “We hoped that a thoughtful website, including our tools to help predict a patient’s risk for financial toxicity, might open the lines of communication. This gives us a way to launch that discussion.”

How recent is the term financial toxicity?

FT has a short and inglorious history. DeSouza’s colleague, Mark Ratain, MD, the Leon O. Jacobson Professor of Medicine, Director of the Center for Personalized Therapeutics, and Associate Director for Clinical Sciences for the Comprehensive Cancer Center, may have been the first to use the phrase professionally in a talk he gave at a meeting of the American Association for the Advancement of Science in 2009. He coined the term, he said, “to report the potential economic impact of modern oncology drugs.” He used the example of a news story about the suicide of cancer patient who had been refused a lifeline as a “grade-5 financial toxicity.”

Ratain had written about FT earlier. He submitted a paper on financial toxicity, written with UChicago colleagues Rena Conti and Dave Meltzer, to the Journal of Clinical Oncology in December 2008. “It underwent two revisions,” he recalled, “and then was rejected.”

Dr. de Souza will also be presenting an abstract of his research study, “Cost communication preferences, financial burden, and health-related quality-of-life,” at the annual meeting of the American Society of Clinical Oncology, held this weekend at McCormick Place in Chicago.  

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