Improving communication of breast cancer recurrence risk

Abstract

Purpose Doctors commonly use genomic testing for breast cancer recurrence risk. We sought to assess whether the standard genomic report provided to doctors is a good approach for communicating results to patients. Methods During 2009–2010, we interviewed 133 patients with stages I or II, node-negative, hormone-receptor positive breast cancer and eligible for the Oncotype DX genomic test. In a randomized experiment, patients viewed 6 vignettes that presented hypothetical recurrence risk test results. Each vignette described a low, intermediate, or high chance of breast cancer recurrence in 10 years. Vignettes used one of five risk formats of increasing complexity that we derived from the standard report that accompanies the commercial assay or a sixth format that used an icon array. Results Among women who received the genomic recurrence risk test, 63% said their doctors showed them the standard report. The standard report format yielded among the most errors in identification of whether a result was low, intermediate or high risk (i.e., the gist of the results), while a newly developed risk continuum format yielded the fewest errors (17% vs. 5%; OR, 0.23; 95% CI, 0.10 to 0.52). For high-recurrence risk results presented in the standard format, women made errors 35% of the time. Women rated the standard report as one of the least understandable and least liked formats, but they rated the risk continuum format as among the most understandable and most liked. Results differed little by health literacy, numeracy, prior receipt of genomic test results during clinical care and actual genomic test results. Conclusion The standard genomic recurrence risk report was more difficult for women to understand and interpret than other formats. A less complex report, potentially including the risk continuum format, would be more effective in communicating test results to patients.

Recommendations from the EGAPP Working Group: does the use of Oncotype DX tumor gene expression profiling to guide treatment decisions improve outcomes in patients with breast cancer?

“…42 A recent survey found an increase in the use of testing from 14.7% in 2006 to 27.5% in 2008 (P < 0.01), 3 and current rates of use are likely to be higher. Nevertheless, there are indications that eligible African-American women may be tested at rates lower than white women; 3 further investigation of this finding will be critical if the test is demonstrated to have clinical utility.…”

“…Studies have begun to document how medical and surgical oncologists use the test, how they communicate results to patients, how well patients understand the information, and how they use it in decision making. [42][43][44][45] Although studies to date are too small to allow firm conclusions, their findings indicated that physicians generally assume the test has clinical utility and many use it as a primary tool in discussing risks and benefits of chemotherapy with women who have HR+ early breast cancer, often by directly sharing with them the report provided by Genomic Health. 42,44 Explanation and discussion of intermediate risk are very challenging, and decisions are ultimately made by incorporating consideration of other clinical factors as well as patients' views and preferences.…”

“…[42][43][44][45] Although studies to date are too small to allow firm conclusions, their findings indicated that physicians generally assume the test has clinical utility and many use it as a primary tool in discussing risks and benefits of chemotherapy with women who have HR+ early breast cancer, often by directly sharing with them the report provided by Genomic Health. 42,44 Explanation and discussion of intermediate risk are very challenging, and decisions are ultimately made by incorporating consideration of other clinical factors as well as patients' views and preferences. 44 Careful presentation of test results is important 42 because approximately one-third of patients have been found to not fully understand the test and its implications, 43 and there is some evidence that patients may overestimate the accuracy of the test.…”

“…42,44 Explanation and discussion of intermediate risk are very challenging, and decisions are ultimately made by incorporating consideration of other clinical factors as well as patients' views and preferences. 44 Careful presentation of test results is important 42 because approximately one-third of patients have been found to not fully understand the test and its implications, 43 and there is some evidence that patients may overestimate the accuracy of the test. 46 • Other molecular prognostic tests that have been developed for predicting recurrence risk in early-stage breast cancer patients have also been evaluated in systematic reviews, 18,19 and recent studies have added to the evidence base for these tests.…”

Tutorial dialogues and gist explanations of genetic breast cancer risk

“…Teaching precise information can be less effective because people can get all the details right but still fail to comprehend the actual gist meaning that would lead to more informed decisions. Standard, detailed medical reports about risk of breast cancer do not adequately convey the important decision relevant information about the meaning of risk to patients, whereas less complex, gist-based reports can more effectively convey such information, suggesting that facilitating appropriate gist representations of information is more useful in the context of understanding risk of breast cancer (Brewer, Richman, DeFrank, Reyna, & Carey, 2012). Additionally, we have found that a preference for integrating qualitative gist information and quantitative base rates assessed by the fuzzy processing preference index ) predicts accuracy at estimating a woman's degree of genetic breast cancer risk .…”