False-positive mammograms influenced women's well-being, but the effects were limited to breast-cancer-specific outcomes. Researchers should include disease-specific measures in future studies of the consequences of false-positive mammograms.
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.
Women's perceived recurrence risk was associated with their actual genomic-based recurrence risks, having had a previous cancer diagnosis, and worry about recurrence. Women with high recurrence risk typically had chemotherapy (78%, 7 of 9), whereas only 2 with a low recurrence risk did (7%, 2 of 30). CONCLUSIONS: This is among the first studies to describe patients' experiences with genomic testing for recurrence risk. Although many women understood discussions about their genomic test results, a third reported not fully understanding these discussions, suggesting a need to aid and improve risk communication and treatment decision making. Cancer
The purpose of this study is to gain an in-depth understanding of African American breast cancer survivors' experiences, barriers and facilitators in accessing breast cancer treatment, and challenges in adherence to follow-up care. We conducted seven focus groups with 32 African American women with breast cancer in three rural counties in eastern North Carolina during August-November 2013. Surveys were also utilized to gather basic demographic and breast health history information. Thematic analysis was performed using the immersion crystallization approach. Several common areas of life affected by breast cancer included faith and support networks, psychosocial well-being, and quality of care issues. Faith in God was an important coping mechanism essential to all women in the study and a critical facilitator in survivorship. Support networks consisted of family, church-family, friends, and co-workers. The concept of fear included the discovery of breast cancer and fear of death, negative side effects of treatment, and social stigma of having breast cancer. Factors that influenced provider-patient relationship were age of provider, perceived lack of empathy, and providers leaving during treatment. Participants also expressed their lack of knowledge regarding a number of the side effects they were experiencing during and after their treatment. Results of this study contribute to the assessment of potential coping mechanisms used by African American breast cancer survivors (i.e., spirituality, positive attitudes, and support networks) that can potentially be effective and have a positive impact on the adjustment of life for survivors.
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