Patient responses to the disclosure of BRCA mutation tests in hereditary breast-ovarian cancer families

Henry T. Lynch, Carrie Snyder, Jane F. Lynch, Peggy Karatoprakli, Abdon Trowonou, Kelly Metcalfe, Steven A. Narod, Gordon Gong

Research output: Contribution to journalArticle

54 Citations (Scopus)

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 languageEnglish
Pages (from-to)91-97
Number of pages7
JournalCancer Genetics and Cytogenetics
Volume165
Issue number2
DOIs
StatePublished - Mar 2006

Fingerprint

Disclosure
Ovarian Neoplasms
Breast Neoplasms
Mutation
Neoplasms
Psychology
Guilt
Genetic Testing
Ovariectomy
Health Insurance
Compliance

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 journalArticle

Lynch, Henry T. ; Snyder, Carrie ; Lynch, Jane F. ; Karatoprakli, Peggy ; Trowonou, Abdon ; Metcalfe, Kelly ; Narod, Steven A. ; Gong, Gordon. / Patient responses to the disclosure of BRCA mutation tests in hereditary breast-ovarian cancer families. In: Cancer Genetics and Cytogenetics. 2006 ; Vol. 165, No. 2. pp. 91-97.
@article{1d4bc63b448649c2b388660602db74d1,
title = "Patient responses to the disclosure of BRCA mutation tests in hereditary breast-ovarian cancer families",
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.",
author = "Lynch, {Henry T.} and Carrie Snyder and Lynch, {Jane F.} and Peggy Karatoprakli and Abdon Trowonou and Kelly Metcalfe and Narod, {Steven A.} and Gordon Gong",
year = "2006",
month = "3",
doi = "10.1016/j.cancergencyto.2005.07.011",
language = "English",
volume = "165",
pages = "91--97",
journal = "Cancer Genetics and Cytogenetics",
issn = "0165-4608",
publisher = "Elsevier Inc.",
number = "2",

}

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.

UR - http://www.scopus.com/inward/record.url?scp=33644779724&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=33644779724&partnerID=8YFLogxK

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 -