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A Pilot study of the Sharing Risk Information Tool (ShaRIT) for Families with Hereditary Breast and Ovarian Cancer Syndrome

DOI: 10.1186/1897-4287-10-4

Keywords: Family communication, Genetic testing, Hereditary breast and ovarian cancer syndrome, BRCA1, BRCA2

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Abstract:

We developed the Sharing Risk Information Tool (ShaRIT), a personalized educational intervention, to support BRCA carriers as they discuss BRCA positive results and their implications with relatives. We conducted a pilot study of 19 BRCA carriers identified through the University of California San Francisco Cancer Risk Program. Our study had two aims: 1) to assess the feasibility and acceptability of ShaRIT, and 2) describe characteristics associated with increased family communication and BRCA testing. Participants in our study were divided into two groups: those who had not received ShaRIT as part of their genetic counseling protocol (control group, n = 10) and those who received ShaRIT (n = 9).All 9 women who received ShaRIT reported that it was a useful resource. Characteristics associated with increased sharing and testing included: female gender, degree of relationship, and frequency of communication. Increased pedigree knowledge showed a trend toward higher rates of sharing.Both participants and genetic counselors considered ShaRIT a well-received, comprehensive tool for disseminating individual risk information and clinical care guidelines to Hereditary Breast and Ovarian Cancer Syndrome families. Because of this, ShaRIT has been incorporated as standard of care at our institution. In the future we hope to evaluate the effects of ShaRIT on family communication and family testing in larger populations of BRCA positive families.BRCA testing for women at high risk of Hereditary Breast and Ovarian Cancer (HBOC) Syndrome is recommended by multiple professional associations [1-3]. For women who test positive for a deleterious BRCA1 or BRCA2 mutation, the lifetime risk of breast cancer is up to 85% and the lifetime risk of ovarian cancer is up to 60% [4,5]. First-degree relatives of a BRCA carrier have a 1 in 2 chance of carrying the known family mutation, and second-degree relatives have a 1 in 4 chance.One of the most clinically important ways to potentially decr

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