Easing Patient Stress Over Treatment Costs: The Benefits of Shared Decision-Making

Oncology Nursing NewsFebruary 2014
Volume 8
Issue 1

When a patient is diagnosed with cancer, clinicians are understandably focused on moving forward with treatment and managing any associated adverse events.

S. Yousuf Zafar, MD, MHS

When a patient is diagnosed with cancer, clinicians are understandably focused on moving forward with treatment and managing any associated adverse events. But as the population ages and more patients are diagnosed, with the costs of cancer care ever rising, and with growing numbers of patients finding themselves spending more out-of-pocket, is it time for costs to become part of the conversation?

Yes, according to S. Yousuf Zafar, MD, MHS, associate professor, Division of Medical Oncology, at the Duke University Medical Center in Durham, North Carolina. He has studied this issue extensively, and he offered an overview of his research for an audience of oncology nursing professionals in a plenary session at the ONS Connections Conference.

“Patients with a cancer diagnosis are more than two-and-a-half times more likely to declare bankruptcy than those without a cancer diagnosis,” said Zafar. “We’re seeing trends that are really concerning in terms of out-of-pocket costs and the cancer patient experience,” he continued, adding that even just a small difference in what patients pay out of pocket can have a huge impact.

To better understand the effect, Zafar and colleagues conducted a series of baseline and follow-up surveys of insured cancer patients around the country who had contacted a national copayment assistance foundation and compared the results with those from a sample of patients treated at an academic medical center.1

The researchers found that patients seeking copayment assistance experienced considerable financial burden (Box); that having health insurance did not eliminate financial worry; and that patients who are younger and those with larger households were more adversely affected.

Do Patients Want to Talk About Cost?

Next, Zafar wanted to find out if patients actually want to discuss finances with their healthcare team, and if so, does the discussion help to alleviate stress? He presented results from an ongoing, cross-sectional study of 300 insured adults who had received ≥1 month of anticancer therapy for solid tumors.2 Participants were asked to assess their financial burden and outof- pocket costs and also about their preferences around decision-making. Most had private insurance, about one-third had Medicare, and the median age of those surveyed was 60. The response rate was 83%.

The researchers found that 17% of those surveyed expressed high levels of financial distress. Overall, when participants were asked if they wanted to talk about costs with their provider, 52% reported some desire to discuss costs, but only 19% reported actually having a cost discussion. Among those with the highest financial distress, 62% wanted to discuss costs, but only 25% had a cost discussion.

“We’re seeing a disconnect among those who want to talk about costs, and those who actually do,” explained Zafar. When respondents were asked why they didn’t bring the issue of costs up, most said they didn’t think it was a big enough problem, about one-third said that they wanted the best care no matter what, and 9% were embarrassed to mention it. About 50% of the respondents indicated that they wanted costs to be included as part of the decision-making, and 21% wanted costs taken into account with every treatment.

Coping With Out-of-Pocket Treatment Costs1

Results from surveys of cancer patients seeking copayment assistance:

  • 20% took less of their medication than prescribed
  • 19% partially filled prescriptions
  • 24% avoided filling prescriptions
  • 17% had to sell possessions, including their homes
  • 46% reduced spending on basics, eg, food, clothing
  • 68% cut back on leisure activities, eg, family vacations
  • 42% reported a significant or catastrophic financial burden
  • 75% were using one or more of these strategies

Among those who reported talking to their clinician about costs, 57% reported a reduction in out-of-pocket costs after having the discussion. Zafar said that one of the most important takeaways from this second study is that there are “false barriers” to cost discussions. “Most patients are not talking about costs, but when the small percentage of patients do, many find it helpful.” And, he added, many doctors also believe it is important to discuss costs, though they may be reluctant to do so due to ethical concerns.

Zafar suggested that the issue of financial burden needs to be understood as a treatmentrelated effect for some patients, even those with insurance—a toxicity that can lead to nonadherence, delaying care, and avoiding or declining tests.

He said that the benefits of such a mindset are many: discussing out-of-pocket costs enables patients to choose lower-cost treatments when there are viable alternatives. Such discussions can assist patients who are willing to trade off a marginal chance of medical benefit for less financial distress. The discussion may also enable patients to access patient assistance programs early enough to avoid financial distress. For the healthcare system as a whole, Zafar noted that there is a growing body of evidence suggesting that including consideration of costs in clinical decision-making may reduce costs in the long run and possibly result in reduced use of interventions that are not in line with the patient’s goals, for example, chemotherapy use near the end of life.

Challengers for Providers

Zafar acknowledged that it is often difficult for providers to determine a patient’s out-of-pocket costs for a given intervention, adding that efforts are underway to address this informational barrier: some insurance companies are developing technologies to better estimate patients’ costs, and several states have passed price-transparency legislation.

Both clinicians and patients may find discussions of money uncomfortable, and it can be difficult to identify which patients are most at risk of financial distress. Zafar is working with colleagues at Duke to develop a mobile intervention to facilitate financial assistance navigation and communication for patients. They will be asked proactively if they expect to have any difficulty with costs, and if so, where—for example, copays, travel, lost wages, etc. This will be followed with financial resource education and suggestions for how to talk to their healthcare team about costs. Zafar is currently planning another study to better understand what impact financial toxicity has on survival. Until better frameworks for financial discussions and interventions are developed, he urged his audience to be on the alert for signs of trouble in their patients:

  • Look for signs of financial distress, eg, nonadherence or missing appointments
  • Screen for financial distress with simple questions, such as: “Are you having any difficulty affording your cancer care?” “Is your insurance going to cover it?”
  • Consider alternative interventions
  • Be aware of resources, including social workers, financial counselors, pharmaceutical funds, and copay assistance programs

“Cancer patients want to discuss costs with their healthcare team but do not know how or when to broach the topic,” Zafar concluded.

“Talking to your patients about cost may improve their quality of life, their overall wellbeing, and the quality of their care.”


  • Zafar SY, Peppercorn JM, Schrag D, et al. The financial toxicity of cancer treatment: a pilot study assessing out-ofpocket expenses and the insured cancer patient’s experience. Oncologist. 2013;18(4):381-390.
  • Zafar SY, Abernethy AP, Tulsky JA, et al. Financial distress, communication, and cancer treatment decision-making: does cost matter? J Clin Oncol. 2013;31(suppl; abstr 6506).

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