Cost of cancer care discussions ‘very rare’ between physicians, patients
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Only about one-fourth of patients newly diagnosed with advanced cancers had documented conversations with their physicians about the costs of care, according to a study conducted by researchers at American Cancer Society and NCI.
“For many years, professional societies have recommended having discussions with patients about the expected costs of care, and many oncologists think it’s important for patients to understand what their treatments may cost,” study lead author Robin Yabroff, PhD, MBA, scientific vice president of health services research at American Cancer Society, told Healio. “Most patients, when asked, say they would like to know about the potential costs of care. Yet these conversations are very rare.”
Yabroff spoke with Healio about her ongoing interest in the cost of cancer care and financial hardship, her study’s findings, and discussed how the oncology team can help close this gap in care.
Healio: What inspired you to conduct this study?
Yabroff: I am very interested in how patients with cancer experience medical financial hardship. Patients may not be able to afford their medical bills, or they are stressed or worried due to their financial situation. They may even delay recommended care because they can’t afford it. Increasingly, there is a lot of evidence showing that people with a cancer history who have financial hardship also have a worse symptom burden, worse health-related quality of life and increased mortality risk. Most prior research examining patient and physician conversations about the cost of care was based on surveys of either physicians or patients, rather than objective measures of these conversations. These surveys are important, but there are potential biases. For example, because of social desirability, oncologists might think it is important to say they have conversations about cost. On the other hand, patients may misremember whether a conversation occurred, especially if they asked many years after their diagnosis.
Healio: How did you conduct this study?
Yabroff: Most years, the National Cancer Institute conducts what are called patterns of care studies. In those studies, cancer registries sample patients with selected cancers — in the study I presented at ASCO Quality Care Symposium, patients with non-small cell lung cancer and melanoma were sampled, both at advanced stages. Those two cancers were selected in part because of some of the treatment advances in recent years. Importantly, those treatment advances can improve patient outcomes, but they are also expensive. My colleague at NCI and I examined whether a documented cost of care discussion could be found in the medical record. We asked the abstracters to look for that information, as well as to identify where that information was in the medical record and what terms or phrases were used. The advantage of using cancer registries for this type of study is that they are population-based, which means everyone within a certain geographic area is included. This means that our study was conducted in newly diagnosed patients with all types of health insurance coverage — including patients without health insurance — and patients treated at all types of facilities, not just at a specific cancer center. Our study was conducted in 12 geographic regions and included about 2,500 patients.
Healio: What did you find?
Yabroff: We found that about a quarter of patients had documentation in their medical records that a conversation about cost had occurred.
Another finding was that patients who were uninsured and those who were receiving systemic treatment — like chemotherapy or immunotherapy — were more likely to have a cost conversation documented. We also found that patients who were treated in hospitals with residency programs were more likely to have documentation in the medical record. This suggests that training may be important. However, no matter what type of treatment patients are getting, it’s important to have discussions about the expected costs. Supportive care can be expensive as well.
In my presentation, I talked about the importance of provider training, guidelines, efforts to improve price, transparency and, potentially, payment to make sure that when these conversations are happening, that providers are reimbursed. Additionally, documentation of a cost-of-care conversation can be incorporated as measures of high-quality care for providers and health systems. Also, electronic health records can include prompts or reminders to providers. Then, finally, thinking about system capacity to make sure that patients who may experience challenges with cancer care affordability can actually receive the care they need. A key intervention is patient navigation.
It is possible that these conversations occurred but were not documented in the medical record. But if that is the case, then other treating physicians and providers don’t have that information either. Additionally, they can’t evaluate whether patients were connected with any services and if patient needs were met.
When these conversations did occur and were documented, we don’t know if patients understood what was mentioned to them, and we don’t know how well those conversations went. Understanding patient experiences with cost conversations is important for future research.
Healio: What barriers to these conversations exist at the provider level?
Yabroff: It’s hard for clinicians to know what the expected out-of-pocket costs may be for a given patient, because patients have different health insurance types, and out-of-pocket costs may differ depending on whether the patient has met the deductible for the year. We already ask a lot of oncologists in terms of time. So, it’s possible that someone else on the care team is the best one to have that conversation. However, I think it is important for oncologists to initiate this conversation and tell patients it’s important.
Healio: What else can oncologists do to help inform patients about the cost of care?
Yabroff: Time is always a challenge because there are so many things to address, but it’s helpful to have another member of the provider team have a detailed conversation about costs. There are some efforts now with training about how best to have these types of conversations. These cost-of-care discussions are important for all patients and should not be limited to patients without health insurance or patients who might not appear able to afford care. Increasingly, we’re seeing that even patients with private health insurance coverage or those with high incomes are having trouble affording their cancer care. On the one hand, it is important not to stigmatize patients or make assumptions; on the other hand, it is important to not miss any patients who need help. To avoid these problems, it is best to say this is a conversation we should be having with every patient.
Healio: Is there anything else you’d like to mention?
Yabroff: We only looked at patients diagnosed with advanced non-small cell lung cancer and melanoma, because those are two cancers where there have been a lot of treatment advances recently. It’s possible that for patients with other cancers, the cost of care conversations are even less common, because there is less focus on new treatments to discuss.
In addition, the data are a bit old — the patients included in our study were diagnosed in 2017 and 2018. Of course, there are treatments now that are even more expensive. So, the situation could be even worse now. Our study findings can serve as a baseline, and doing a similar study in the future to see if the frequency of documented discussions about the costof care has changed would be very useful.
Reference:
Yabroff R, et al. Cost-of-care discussions for individuals with newly diagnosed non-small cell lung cancer and melanoma: findings from a population-based study. Presented at: ASCO Quality Care Symposium, Oct. 27-28, 2023; Boston.
Robin Yabroff, PhD, MBA, can be reached at National Cancer Institute, 3380 Chastain Meadows Parkway, Suite 200, Kennesaw, GA 30144; email: robin.yabroff@cancer.org.
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