Among insured U.S. cancer patients, most of whom were privately covered, financial toxicity was evident, a study found. The findings revealed that two in five surveyed cancer patients had higher than expected out-of-pocket (OOP) costs for their treatment, and this unpreparedness to handle costs was strongly associated with having high financial distress (OR, 4.78; 95% CI, 2.02-11.32, P<.01) (JAMA Oncol 2017; doi:10.1001/jamaoncol.2017.2148).
Erin Aakhus, MD, Instructor at University of Pennsylvania, Perelman School of Medicine, Philadelphia, described the study as a "nice addition to the literature" that demonstrates the "unexpected nature" of OOP costs and need for upfront delivery of cost information to patients.
Study Methodology
The study was conducted as a cross-sectional survey aimed to assess financial distress and cost expectations among insured cancer patients currently undergoing therapy. The study enrolled 300 eligible participants, three of which withdrew. Participants were enrolled between approximately November and March. A participant's OOP costs were based on his or her best estimation of recent, averaged monthly expenses.
The survey also evaluated a participant's willingness to pay more for treatment, a measure aimed to elucidate how cost affects treatment decisions. This was assessed by providing participants with several brackets of increasing dollar amounts per month and then asking how much they would be willing to pay OOP for cancer care.
Most participants were white (75.3%), and nearly half (45.7%) had an annual household income of $60,000 or more. The median age of participants was 59.6 years, and about half were men (52%) and half women (48%). Participants were insured through a private plan (56%), Medicare (35.7%), or Medicaid (7.3%).
Trial Results
Researchers found that participants experiencing the most financial distress were paying a median of 31 percent of their monthly income on OOP costs, qualifying these participants as underinsured. Underinsured patients are those who have insurance yet pay more than 10 percent of their monthly income on OOP health care expenses, excluding premiums. Those having no, low, or average financial distress paid a median of 10 percent of their monthly income, just below the cutoff for being underinsured.
"[Thirty-one percent is] an overwhelming amount of money [for patients] to pay towards their cancer treatment despite having insurance," said senior author Yousuf Zafar, MD, MHS, Associate Professor of Medicine and Public Policy at Duke Cancer Institute, Durham, N.C. "I think that is reflective of two things. First, the high cost of cancer treatment today and, second, how insurance benefit design is shifting costs more and more towards patients."
Those with high financial distress paid a median of $728 each month OOP, excluding premiums, whereas those not experiencing high financial distress paid $565.
High financial distress has been linked with poorer overall quality of life and increased risk for acquiring debt and filing for bankruptcy.
Study authors were concerned patients may be making or starting to make treatment decisions based off cost of care, such as choosing a less effective therapy because it costs less than the recommended one. Other research has shown that cancer patients faced with prohibitive costs may skip doses to spread out the medication or forgo filling medications altogether to cut costs.
The researchers found that being faced with higher than expected OOP costs was associated with decreased willingness to pay for care (OR, 0.48; 95% CI, 0.25-0.95; P=.03). However, the researchers were not able to determine if actual treatment decisions were affected.
"Willingness to pay is a health economics term that's usually used in a population setting to establish what the average person in a group is willing to pay for themselves or for someone else to get some kind of service," Aakhus said. She explained that many factors can influence willingness to pay and, although the finding was statistically significant, it generates "a lot of questions" about the "subtler" contributing factors to willingness to pay, such as socioeconomic status. She encouraged further exploration of this finding.
Risk factors for being unprepared for high costs were found to be younger age, nonwhite race, and having a lower household income. Previous studies have similarly shown that a cancer patient's young age, minority race, and low income can contribute to his or her risk of financial toxicity.
"Just because our patients have insurance, doesn't mean they aren't facing unacceptable financial burden," Zafar said regarding the study findings. "[Also], even though they may not be telling us about it, our patients are starting to make decisions about treatment based on affordability."
Zafar explained that, in the clinic, he has seen these sorts of decisions being made. "Many of us have had patients with insurance who have still told us that they can't afford the treatment regimen that we've prescribed them, whether that's because of the drugs or the frequency of visits or the CT scan-or all of it put together."
Aakhus pointed out a few limitations of the study. She explained that participants' OOP costs were self-reported and not validated by an independent data resource, such as claims data.
"At least in my experience, I think it's difficult for many patients to even tell you what monthly out-of-pocket costs would be because so many of their bills come separately at different times," she said. "I think the self-reported nature of the cost element is potentially influenced by recall bias."
Also, the survey was cross-sectional, meaning participants were evaluated at only a single point in time. OOP costs are typically higher at the beginning of the calendar year before a deductible is reached than at the end of the year, so exactly when a participant was surveyed could influence their best estimation of costs.
Conversations About Cost
Overall, the study calls for shared decision-making tools or other interventions to help educate and prepare cancer patients for the costs of their care.
"In general, we are not trained to talk to patients about the cost of care. We are trained to treat them and treat their cancer, but we're learning more and more that costs are impacting our patients' ability to afford the treatment that we think is best for them," Zafar said. "We need to get past the stigma of the cost conversation and realize that, just in the same way that we address patients' physical toxicity, we have to consider their financial toxicity as well."
Aakhus, who conducts research on barriers to having conversations about cost in the clinic, agreed with the study conclusions, noting, "Many barriers [to discussing cost] do exist, and we lack tools to penetrate those barriers, so interventions to improve literacy or transparency are [needed]."
Christina Bennett is a contributing writer.