News of the discovery of BRCA1 is likely to generate strong pressures for clinical testing from biotechnology companies, the medical community, and the public. Our research shows that there currently is a high level of interest in BRCA1 testing among first-degree relatives (FDRs) of breast and ovarian cancer patients. This is despite the fact that only a small percentage of these FDRs will have a predisposing mutation. The results also show that a majority of FDRs have exaggerated sense of their personal risk, high levels of cancer anxiety, and misunderstanding about the benefits and limitations of BRCA1 testing. These findings underscore the importance of developing effective and culturally- sensitive strategies for educating women with a family history who express initial interest in BRCA1 testing. To address this, we have developed two protocols for providing pre-test education to FDRs who may seek BRCA1 testing in the future: 1) Standard Education that addresses the benefits, limitations, and risks of testing, and 2) Education plus Counseling that also addresses the psychosocial aspects of alternate testing decisions.
The specific aims of this research are to: 1) evaluate the relative impact of these pre-test education protocols on knowledge and attitudes about BRCA1 testing, testing plans and decisions, psychological well-being, and health behavior; 2) identify women most and least likely to benefit, based on the ethnicity, risk status, and coping styles; and 3) determine the mechanisms by which pre-test education contributes to improved outcomes. The subjects will be 900 African-American and white women with a family history of breast or ovarian cancer. They will be randomized to one of three study conditions: 1) Standard Education only; 2) Education plus Counseling; or 3) Wait-list Control (the wait-list control group will be re-randomized to E or E+C after the 1-month follow-up). lnterventions will be delivered during a 1.5 hour individual visit with a nurse educator. Telephone interviews will be conducted at baseline to collect data on sociodemographics, risk factors, and coping styles (information seeking vs. avoidance), and to establish baseline levels of outcome variables. Follow-up interviews will be conducted 1 and 12 months post-intervention to assess the short and long-term impact of the pre- test education interventions. Causal (path) modelling will be used to identify key variables and causal processes associated with changes in knowledge, attitudes, testing plans, and psychological well-being. The pre- test education interventions are to be replicable and exportable to diverse practice settings where women may seek BRCA1 testing in the future.
| Benkendorf, J L; Reutenauer, J E; Hughes, C A et al. (1997) Patients' attitudes about autonomy and confidentiality in genetic testing for breast-ovarian cancer susceptibility. Am J Med Genet 73:296-303 |
| Lerman, C; Biesecker, B; Benkendorf, J L et al. (1997) Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing. J Natl Cancer Inst 89:148-57 |
