A Pilot study of the Sharing Risk Information Tool (ShaRIT) for Families with Hereditary Breast and Ovarian Cancer Syndrome
Open Access
- 12 April 2012
- journal article
- Published by Springer Science and Business Media LLC in Hereditary Cancer in Clinical Practice
- Vol. 10 (1), 4-10
- https://doi.org/10.1186/1897-4287-10-4
Abstract
Background: Individuals who carry deleterious BRCA mutations face significantly elevated risks of breast, ovarian, and other cancers. These individuals are also responsible for informing relatives of their increased risk for carrying the family BRCA mutation. Few interventions have been developed to facilitate this family communication process. Methods: 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). Results: 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. Conclusions: 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.Keywords
This publication has 28 references indexed in Scilit:
- What Facilitates or Impedes Family Communication Following Genetic Testing for Cancer Risk? A Systematic Review and Meta‐Synthesis of Primary Qualitative ResearchJournal of Genetic Counseling, 2010
- Factors Determining Dissemination of Results and Uptake of Genetic Testing in Families with Known BRCA1/2 MutationsGenetic Testing, 2008
- How Often Do BRCA Mutation Carriers Tell Their Young Children of the Family's Risk for Cancer? A Study of Parental Disclosure of BRCA Mutations to Minors and Young AdultsJournal of Clinical Oncology, 2007
- Genetic uptake in BRCA-mutation families is related to emotional and behavioral communication characteristics of index patientsFamilial Cancer, 2005
- An investigation of the disclosure process and support needs of BRCA1 and BRCA2 carriersAmerican Journal of Medical Genetics Part A, 2003
- Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patientsAmerican Journal of Medical Genetics Part A, 2002
- Communicating Genetic Test Results to the FamilyFamily & Community Health, 2001
- Factors associated with decisions about clinical BRCA1/2 testing.2000
- BRCA1 in the family: A case description of the psychological implicationsAmerican Journal of Medical Genetics, 1997
- Patient Satisfaction with Health Care DecisionsMedical Decision Making, 1996