ELAPSED TIME TO DISCLOSURE OF BRCA1/2 GENETIC TESTING RESULTS AND PARTICIPANTS' DISTRESS- PRELIMINARY FINDINGS FROM A RESEARCH SETTING

Author(s)

Dorval M1, Maunsell E1, Morel S1, Dugas MJ2, Simard JR1 , 1Université Laval, Québec, QC, Canada; 2Concordia University, Montréal, QC, Canada

OBJECTIVE: It is assumed that genetic testing for breast-ovarian cancer predisposition in the context of peer-reviewed research protocols at academic centers offers protection against test-related distress. However, BRCA1/2 genetic testing under research protocols often implies a significant time delay before the test result can be disclosed, which would not apply to commercially available testing. Using data from our own research setting, we investigated whether delay in getting BRCA1/2 test results was associated with participants' distress. METHODS: Participants were 128 women from 26 French Canadian kindred with a BRCA1/2 germline mutation identified. Genetic counseling was provided in a pre-test education session and a result disclosure session. Of the women tested, 53 (41%) were found to be carriers of the familial mutation and 75 (59%), non-carriers. Mean age at enrollment (48.4 yrs ± 12.1) was similar for the two groups. Test-related distress was assessed by the Impact of Event Scale one month after result disclosure. RESULTS: Time interval between blood sample for testing and result disclosure varied considerably (range: 35 to 756 days), and was similar for carriers (mean = 172 ± 120 days) and non-carriers (mean = 174 ± 174 days). Among non-carriers, those given their result less than six months following blood draw (n = 48) tended to have lower levels of test-related distress (mean = 3.3 ± 5.2) than those who were told their result beyond 6 months (n = 27) (mean = 7.8 ± 11.2) (p = .06). For carriers, test-related distress did not differ according to whether they were given their result less than six months (n = 35) (mean = 10.4 ± 13.7) after the blood draw or later (n = 18) (mean = 9.8 ± 12.2). CONCLUSIONS: Consistent with others, these results indicate that most women cope well with test information in research settings with careful expert counseling. Nevertheless, our findings among non-carriers suggest that prompt disclosure of BRCA1/2 test results has potential quality-of-life benefits.

Conference/Value in Health Info

2001-11, ISPOR Europe 2001, Cannes, France

Value in Health, Vol. 4, No. 6 (November/December 2001)

Code

PCN16

Topic

Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes

Disease

Oncology

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