Abstract
Limited attention has been given to the impact of BRCA mutation disclosure on participants' psychological reaction and cancer control compliance. We asked women (290 mutation-positive, 370 mutation-negative) from 84 hereditary breast-ovarian cancer (HBOC) families with known deleterious BRCA mutations to participate in an evaluation regarding cancer prevention recommendations before and after BRCA mutation disclosure. Both men and women (n = 780) were invited to complete a questionnaire to evaluate their psychological response to BRCA mutation disclosure. Before BRCA testing, 23.0% (152 of 660) of these women underwent prophylactic bilateral mastectomy, oophorectomy, or both; of these, 53% (80 of 152) were subsequently found to be mutation negative. After mutation disclosure, 52.9% (110 of 208) of mutation carriers and 0% (0 of 203) of noncarriers underwent prophylactic surgeries. These changes were statistically significant compared with before disclosure (P <0.0001). The rate of transvaginal ovarian ultrasound screening was significantly increased in mutation carriers (P <0.015) and marginally decreased in noncarriers (P = 0.063) post disclosure. Psychologically, compared with noncarriers without cancer, a significantly higher percentage of carriers, regardless of their cancer status, felt guilt about passing a mutation to their children, worried about developing additional cancer or their children developing cancer, and were concerned about health insurance discrimination. Despite these psychological consequences, carriers and noncarriers reported a positive attitude toward genetic testing.
| Original language | English |
|---|---|
| Pages (from-to) | 91-97 |
| Number of pages | 7 |
| Journal | Cancer Genetics and Cytogenetics |
| Volume | 165 |
| Issue number | 2 |
| DOIs | |
| State | Published - Mar 2006 |
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All Science Journal Classification (ASJC) codes
- Cancer Research
- Genetics
- Molecular Biology
Cite this
Patient responses to the disclosure of BRCA mutation tests in hereditary breast-ovarian cancer families. / Lynch, Henry T.; Snyder, Carrie; Lynch, Jane F.; Karatoprakli, Peggy; Trowonou, Abdon; Metcalfe, Kelly; Narod, Steven A.; Gong, Gordon.
In: Cancer Genetics and Cytogenetics, Vol. 165, No. 2, 03.2006, p. 91-97.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - Patient responses to the disclosure of BRCA mutation tests in hereditary breast-ovarian cancer families
AU - Lynch, Henry T.
AU - Snyder, Carrie
AU - Lynch, Jane F.
AU - Karatoprakli, Peggy
AU - Trowonou, Abdon
AU - Metcalfe, Kelly
AU - Narod, Steven A.
AU - Gong, Gordon
PY - 2006/3
Y1 - 2006/3
N2 - Limited attention has been given to the impact of BRCA mutation disclosure on participants' psychological reaction and cancer control compliance. We asked women (290 mutation-positive, 370 mutation-negative) from 84 hereditary breast-ovarian cancer (HBOC) families with known deleterious BRCA mutations to participate in an evaluation regarding cancer prevention recommendations before and after BRCA mutation disclosure. Both men and women (n = 780) were invited to complete a questionnaire to evaluate their psychological response to BRCA mutation disclosure. Before BRCA testing, 23.0% (152 of 660) of these women underwent prophylactic bilateral mastectomy, oophorectomy, or both; of these, 53% (80 of 152) were subsequently found to be mutation negative. After mutation disclosure, 52.9% (110 of 208) of mutation carriers and 0% (0 of 203) of noncarriers underwent prophylactic surgeries. These changes were statistically significant compared with before disclosure (P <0.0001). The rate of transvaginal ovarian ultrasound screening was significantly increased in mutation carriers (P <0.015) and marginally decreased in noncarriers (P = 0.063) post disclosure. Psychologically, compared with noncarriers without cancer, a significantly higher percentage of carriers, regardless of their cancer status, felt guilt about passing a mutation to their children, worried about developing additional cancer or their children developing cancer, and were concerned about health insurance discrimination. Despite these psychological consequences, carriers and noncarriers reported a positive attitude toward genetic testing.
AB - Limited attention has been given to the impact of BRCA mutation disclosure on participants' psychological reaction and cancer control compliance. We asked women (290 mutation-positive, 370 mutation-negative) from 84 hereditary breast-ovarian cancer (HBOC) families with known deleterious BRCA mutations to participate in an evaluation regarding cancer prevention recommendations before and after BRCA mutation disclosure. Both men and women (n = 780) were invited to complete a questionnaire to evaluate their psychological response to BRCA mutation disclosure. Before BRCA testing, 23.0% (152 of 660) of these women underwent prophylactic bilateral mastectomy, oophorectomy, or both; of these, 53% (80 of 152) were subsequently found to be mutation negative. After mutation disclosure, 52.9% (110 of 208) of mutation carriers and 0% (0 of 203) of noncarriers underwent prophylactic surgeries. These changes were statistically significant compared with before disclosure (P <0.0001). The rate of transvaginal ovarian ultrasound screening was significantly increased in mutation carriers (P <0.015) and marginally decreased in noncarriers (P = 0.063) post disclosure. Psychologically, compared with noncarriers without cancer, a significantly higher percentage of carriers, regardless of their cancer status, felt guilt about passing a mutation to their children, worried about developing additional cancer or their children developing cancer, and were concerned about health insurance discrimination. Despite these psychological consequences, carriers and noncarriers reported a positive attitude toward genetic testing.
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U2 - 10.1016/j.cancergencyto.2005.07.011
DO - 10.1016/j.cancergencyto.2005.07.011
M3 - Article
VL - 165
SP - 91
EP - 97
JO - Cancer Genetics and Cytogenetics
JF - Cancer Genetics and Cytogenetics
SN - 0165-4608
IS - 2
ER -