Factors Associated With Oncologist Discussions of the Costs of Genomic Testing and Related Treatments

K. Robin Yabroff; Jingxuan Zhao; Janet S. de Moor; Helmneh M. Sineshaw; Andrew N. Freedman; Zhiyuan Zheng; Xuesong Han; Ashish Rai; Carrie N. Klabunde


J Natl Cancer Inst. 2020;112(5):498-506. 

In This Article


In this study, we used data from a nationally representative survey of oncologists conducted in 2017 to assess the frequency of discussions about the costs of genomic testing and related treatments with the cancer patients in their practices. At the time of the survey, the costs of genomic testing to inform treatment ranged from $300 to more than $10 000 for available tests,[30,39] and the list price of molecularly targeted therapies frequently exceeded $100 000 annually,[27–29] with some prices higher than $350 000.[40] The Centers for Medicare and Medicaid Services had not yet issued a national coverage determination for genomic testing, and many private insurers did not cover genomic tests. Despite widespread attention to cost,[18–20] designation of cost discussions as an important element of high-quality cancer care for all patients,[14,17,21,22] and potentially high patient out-of-pocket costs, we found that only half of oncologists reported that they or their staff often discussed the costs of genomic testing and related treatment and nearly one-quarter reported never or rarely discussing costs. With rapid growth in the availability of genomic tests and targeted treatments for cancer and a large pipeline of treatments in development,[26] improving provider discussions about expected out-of-pocket costs will be critical for ensuring informed patient treatment decision making and the opportunity to plan for treatment expenses and help address out-of-pocket costs by linking patients with available resources and ensuring high-quality cancer care.

We identified potentially modifiable physician- and practice-level factors associated with greater frequency of cost discussions, including oncologist training in genomic testing and EMR alerts for genomic testing within the practice. Training and alerts may reflect more attention to genomic testing and related treatment and greater familiarity with their costs. Other aspects of physician expertise in treating patients, including treating solid tumors (for which most genomic panel tests are available, therefore, physicians who treat them may be more familiar with their costs), higher patient volume, and longer time since medical school graduation were also associated with greater frequency of cost discussions. These findings are consistent with other research showing that physician expertise—measured as training, specialty, patient volume, and/or years in practice—is associated with treatment recommendations,[41] as well as aspects of treatment cost-consciousness, which includes the importance of cost savings, awareness of patient out-of-pocket costs, and discussions of financial burden.[42] Provider- and practice-level interventions, such as training, electronic reminders, and peer comparisons, have been shown to be effective in improving recommendations for cancer screening and other services.[43–45] Better understanding of the relative influences of expertise, training, and use of EMR technology on cost-consciousness and, ultimately, patient out-of-pocket costs is needed. In addition, identification and/or adaptation of interventions to address potentially modifiable factors to increase the frequency of discussions of patient costs associated with genomic testing and related treatments is an important area for future research.

Prior research has shown that insufficient physician time, discomfort with talking about treatment costs, limited knowledge of costs, and lack of price transparency for specific treatments may be barriers to physicians engaging with patients and family members in conversations about the expected out-of-pocket and other costs of cancer care.[24,46–48] Oncologists may not be the providers best suited for all discussions about the expected costs of care;[49] however, they can be responsible for ensuring that these conversations take place with a member of the care team within their practice. Normalization of cost discussions with all cancer patients, regardless of health insurance coverage or apparent resources, will be necessary to avoid stigmatization as well as underidentification of medical financial hardship, which is prevalent even among those with private health insurance coverage.[50,51]

Initiating a discussion about the expected out-of-pocket costs of genomic testing and related treatment is a necessary first step but is not sufficient to ensure that patients and their families can make fully informed decisions about treatment options. Less is known about the content and quality of cost discussions, which are especially important given the high costs of cancer treatment. Price transparency tools are increasingly available,[52–56] and EMRs could be leveraged to provide information about prices at the point of care.[57] Provider training materials and practice guides have been developed to address physician discomfort with cost-of-care discussions and limited knowledge about costs.[58,59] Training materials also address aspects of discussion content beyond patient out-of-pocket costs for medical care, such as expenses for transportation to and from medical care, childcare and eldercare, housing, and food.[58] Because patients may not be able to work during treatment, minimizing lost wages and maintaining access to employer-sponsored health insurance are additional topics that are increasingly recommended for informed decision making.[58,60–62] Team-based approaches to cost discussions may help address barriers related to physician time. Identifying the member(s) of the care team best suited for these discussions, if not the oncologist, along with best practices for content of discussions and integrating cost conversations throughout treatment into workflow[63] will be important for future intervention research.

We also found that patient characteristics and area-level socioeconomic conditions for the practice location were associated with the frequency of cost discussions. Oncologists in practices with a higher percentage of patients with Medicaid coverage or who were self-pay or uninsured, and those practicing in areas with lower per-capita income, were more likely to report more frequent cost discussions than were oncologists with lower proportions of Medicaid or uninsured patients or who practice in higher-income areas. Although low-income and uninsured patients are most likely to experience medical financial hardship,[9,11,33,51,64–68] accumulating research suggests that private health insurance coverage and higher socioeconomic status do not eliminate the risk of hardship. Even privately insured cancer survivors report problems paying medical bills, experiencing stress related to medical bills, or delaying or forgoing care because of cost,[50,51,69] and nearly 30% of cancer survivors ages 18–64 years report multiple types of medical financial hardship as a result of their cancer diagnosis, treatment, or lasting effects of treatment. Thus, discussions about the expected costs of cancer care are important for all patients.

Despite the strength of being one of the first studies to address the frequency of cost discussions about genomic testing and related treatment in a large, population-based, nationally representative sample of oncologists, our study has several limitations. The survey data are cross-sectional, and we report associations between physician-, practice-, and area-level characteristics and frequency of cost discussions, rather than causality. The survey response rate was low. Although we used sample weights to adjust for survey design and nonresponse in all analyses, it is possible that responders and nonresponders differed on some characteristics. Information about provider and practice characteristics was based on self-report and is susceptible to biases related to recall and social desirability. However, given the attention to the cost of cancer care by professional societies[21,22] and the scientific and popular press,[14–17] social desirability bias would suggest that our estimates overstate the frequency of cost discussions. Despite use of cognitive testing prior to fielding the survey, some questions were fairly broad (eg, training in genomic testing) and may have had varying interpretations by oncologists.

The survey question about the frequency of cost discussions did not differentiate between tests for single gene variants, gene expression, or NGS gene panels. Additionally, the survey did not include questions about whether patients were responsible for the costs of genomic testing at the oncologist's primary institution. Anecdotal reports suggest that some manufacturers and academic institutions provide patients with financial support for genomic testing. However, it is less clear that financial support is similarly available for targeted therapies should a cancer patient be found to have a relevant variant. Finally, the survey on which this study was based was conducted in 2017, and genomic testing and targeted treatments are rapidly evolving, as are changes in insurance coverage and associated patient costs. We do not expect underlying associations between oncologist and practice factors and the frequency of cost discussions to change, however.

In conclusion, we found that physician and practice factors are associated with frequency of discussing the costs of genomic testing and related treatments by oncologists. In the context of rising costs of cancer care, interventions targeting modifiable physician and practice factors may help increase the frequency of physician-patient cost discussions, contributing to more informed patient decisions and higher-quality cancer care.