Do Breast Cancer Patients Tested in the Oncology Care Setting ShareBRCAMutation Results with Family Members and Health Care Providers?

Abstract

BRCA genetic test results provide important information to manage cancer risk for patients and their families. Little is known on the communication of genetic test results by mutation status with family members and physicians in the oncology care setting. As part of a longitudinal study evaluating the impact of genetic counseling and testing among recently diagnosed breast cancer patients, we collected patients' self-reported patterns of disclosure. Descriptive statistics characterized the sample and determined the prevalence of disclosure of BRCA test results to family members and physicians. Of 100 patients who completed the baseline and the 6-month followup survey, 77 reported pursuing testing. The majority shared test results with female first-degree relatives; fewer did with males. Participants were more likely to share results with oncologists compared to surgeons, primary care physicians, or other specialty physicians. These findings suggest that while breast cancer patients may communicate results to at-risk female family members and their medical oncologist, they may need education and support to facilitate communication to other first-degree relatives and providers.

Impact of a Randomized Controlled Educational Trial to Improve Physician Practice Behaviors Around Screening for Inherited Breast Cancer

“…11,27 Physicians also fell short in their counseling about the implications of test results, focusing heavily on surgical options and neglecting to explore familial implications, emotional impacts, or social support, though each of these is an essential component of the genetic counseling process. [42][43][44][45] Furthermore, though considerable attention was devoted to ELSI issues in the web-based and control curriculum materials, only half of the participants talked with the SP about medical record confidentiality, insurance discrimination, and federal legal protections. Even fewer examined employment discrimination concerns, and none explored the important issue of social stigma.…”

Strategies for recruitment of relatives of BRCA mutation carriers to a genetic testing program in the Bahamas

“…It is important to determine barriers that prevent Bahamian women from communicating positive BRCA mutation results to their at‐risk relatives. Compared to studies in non‐Bahamian populations in the United States and Canada, the number of relatives in the Bahamas who came for genetic counseling was low . In our study, when the proband was the person disclosing their result to relatives, 8% of relatives came for genetic counseling.…”

“…In our study, when the proband was the person disclosing their result to relatives, 8% of relatives came for genetic counseling. In contrast, other studies have found that between 80% and 100% of relatives were informed of the proband's result when the proband was tasked with informing them . The uptake of genetic counseling by relatives was similar in our population to that of other studies when at‐risk relatives were informed directly by the genetic counselor (84%).…”

Breast Cancer Survivors' Knowledge of Hereditary Breast and Ovarian Cancer following Genetic Counseling: An Exploration of General and Survivor-Specific Knowledge Items

“…The methods used for the study are reported in greater detail in previous reports [26,27] and are briefly summarized below.…”

“…The paper reported differences in outcomes related to knowledge, cancer-related distress, and decisional conflict between patients who attended pretest genetic counseling prior to, versus those who attended after definitive surgical treatment [26]. A second paper reported on communication of test results to family members and providers among a subset of BC survivors who pursued genetic testing [27]. …”