Psychosocial Issues in Inherited Breast Cancer Syndromes
A randomized trial with 126 BRCA1/BRCA2 mutation carriers evaluated whether psychological and behavioral outcomes of BRCA1/BRCA2 testing are improved among mutation carriers by providing a psychosocial telephone counseling intervention in addition to standard genetic counseling. The intervention consisted of five 60- to 90-minute telephone counseling sessions. The first session was a semistructured clinical assessment interview designed to allow the mutation carrier to describe her experiences and reactions to BRCA testing results. The second through the fourth telephone sessions were individualized to the concerns raised by the woman in the domains of making medical decisions, managing family concerns, and emotional reactions following receipt of a positive BRCA1/BRCA2 result. The final telephone session focused on integration and closure on the issues raised and implemention of a plan for short-term and long-term goals established during the telephone intervention. Women most likely to complete the intervention were those who did not have a personal history of cancer; those who had higher levels of cancer-specific distress; those who were college graduates; and those who were employed. Outcome data from this study has not yet been reported.
A pilot study demonstrated the usefulness of a six-session psychoeducational support group for women at high genetic risk of breast cancer who were considering prophylactic mastectomy. The themes for the group sessions included overestimation of and anxiety about risk, desire for hard data, emotional impact of watching a mother die of breast cancer, concerns about spouse reactions, self-image and body image, the decision-making process, and confusion over whom to trust in decision-making. Both the participants and the multidisciplinary leaders concluded that as a supplement to individual counseling, a support group is a beneficial and cost-effective treatment modality.
A prospective study from the Netherlands  involving 163 newly-identified BRCA mutation carriers with no history of cancer considered the effects of psychoeducational support sessions on completion of intended risk management preferences (breast cancer surveillance or prophylactic mastectomy). All were offered the opportunity to participate in eight sessions focused on psychosocial (five sessions) and medical information (three sessions) following the receipt of test results. The number of women with a preference for mastectomy following receipt of test results who actually had a mastectomy at follow-up (median 2 years) was higher in the group that attended the psychoeducational support sessions compared with those who did not attend (89% and 63%, respectively; OR = 4.8, P = .04).
Women who called the NCI's Cancer Information Service seeking information about breast or ovarian cancer risk, risk assessment, or cancer genetic testing, were randomly assigned to receive (1) general information about cancer risk and a referral to testing and counseling services or (2) an educational intervention designed to increase knowledge and understanding about inherited cancer risk, personal history of cancer, and the benefits and limitations of genetic testing. In the group receiving the educational intervention, intention to obtain genetic testing decreased among women at average breast cancer risk (as determined by the Gail model) and increased among women at high risk. Among average risk women, those in the intervention group identified as high monitors (i.e., those who seek and pay greater attention to threatening health-related information) demonstrated an increase in knowledge and breast cancer risk perceptions compared with low monitors (i.e., those who avoid attending to threatening health-related information).