Patients Divided on Discussing Treatment Costs, but When They Do, It Can Help

S. Yousuf Zafar, MD, MHS

S. Yousuf Zafar, MD, MHS

Despite growing interest in the financial burden of out-of-pocket cancer treatment costs, little is known about whether patients actually want to talk about costs with their oncology team. A survey of 300 insured patients is shedding some light on the subject, finding that although 48% indicated that they never wanted to discuss the topic, the remainder expressed some level of interest in such conversations.

The survey also found that when these patient—provider discussions took place, it had a positive impact on treatment costs.

Patients with cancer face higher out-of-pocket expenses than individuals with other chronic illnesses, and studies have shown that worry over treatment costs negatively impacts patient quality of life, even for patients with health insurance. For this study, a research team led by S. Yousuf Zafar, MD, MHS, of the Duke Cancer Institute, sought to gauge patient preferences for cost discussions with their oncologists, specifically among patients who have insurance. They noted that this issue has come to the fore recently, because many individuals insured through the Affordable Care Act purchase bronze or silver health insurance plans which have lower premiums but higher out-of-pocket costs.

Adult patients with a solid tumor diagnosis were recruited from a comprehensive cancer center and three rural oncology clinics over an 8-month period, beginning in November 2012. Response rates were high: of 349 patients approached to participate, 86% (N = 300) completed the baseline survey, and 246 completed an identical follow-up survey 3 months later.

The survey asked patients these questions and rated their responses on a 1-10 scale:

(1) How much do you want to talk to your doctor about your cancer-related out-of-pocket costs? (1 = not at all, 10 = a great deal).

(2) Do you want your cancer doctor to take your costs into account when he/she decides how to treat your cancer? (1 = never, 10 = always take into account).

Forty-eight percent of participants selected not at all when asked if they wanted to discuss costs with their provider; of the 52% who expressed some interest, 15% indicated the middle value of 5, and 9% responded a great deal.

In reply to the second question, 49% responded they never wanted costs taken into account. Of the 51% of patients who did want them factored in to some degree, 62 (21%) answered “always,” and the remaining 30% were evenly split across values 2-9.

Of the total cohort, 19% had talked with their oncologist about costs, whereas 76% (n = 227) did not think their physician knew how much their patients were paying out-of-pocket for their care.

Among the 56 patients who said that they did discuss costs with their oncologists, 32 indicated treatment costs were lower due to the following: referral to financial assistance services (53%), facilitating insurance approvals (25%), changing to less expensive prescription medicines (19%), changing/decreasing the number of tests (13%), and reducing physician visits (6%).

When asked their reasons for avoiding cost discussions with their doctor, 53% of respondents reported having no difficulty affording care, and 34% indicated that they wanted the best possible care, regardless of cost. Nevertheless, more than half of the respondents reported spending some of their savings to pay for their cancer care, and 25% used credit.

The study found median monthly out-of-pocket costs for the respondents’ cancer treatment to be $592 (range = $3-$47,250), and the median respondent distress score was 3.62, with 1 representing the least distress and 10 the most. Overall, 16% of patients had scores of 8-10, representing "high or overwhelming" financial distress.

Median age of respondents was 60 years, and only about one-third were working either full or part time. Not surprisingly, higher financial distress was associated with a greater likelihood to express a preference for cost discussions. Additionally, nonwhites were less likely to want to initiate these conversations.

Study authors wrote that despite the survey’s wide variation in discussion preferences, “more than half of the patients who discussed finances with their doctor reported lower out-of-pocket costs as a result of that discussion,” and notably, “most of the time, costs were reduced without actually changing the care that was delivered.”

Providing “preference-sensitive care” regarding costs could be a challenge for practitioners, the authors acknowledged, not only because of the wide variation in patient preferences they found, but also known barriers, such as a lack of price transparency and limited time to conduct such discussions in the clinic.

Still, the Institute of Medicine and others have recommended that patients be informed of costs in an understandable way as part of delivering quality, patient-centered oncology care. Future priorities for research the authors cited include finding reliable ways to identify those patients who want, or would most benefit, from a discussion of treatment costs, and validating interventions to reduce out-of-pocket costs at the practice level.

Zafar SY, Chino F, Ubel PA, et al. The utility of cost discussions between patients with cancer and oncologists. Am J Manag Care. 2015;21(9):607-615.