Prophylactic surgery decisions and surveillance practices one year following BRCA 1/2 testing

Caryn Lerman, Chanita Hughes, Robert T. Croyle, David Main, Carolyn Durham, Carrie Snyder, Aba Bonney, Jane F. Lynch, Steven A. Narod, Henry T. Lynch

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Abstract

Background. Although genetic testing for breast cancer risk is clinically available, its impact on health-related behaviors is unknown. This study examined prophylactic surgery and surveillance behavior during the year following BRCA1/2 gene testing. Methods. Participants were female members (n = 216) of hereditary breast-ovarian cancer families (84 mutation carriers, 83 noncarriers and 49 test decliners). In this prospective observational study, utilization of prophylactic surgery and surveillance behavior were assessed 1-year following BRCA1/2 testing. Results. Only 3% of the unaffected carriers obtained prophylactic mastectomy during the 1-year follow-up period. Among the remaining females, carriers had significantly higher rates of mammography (68%) than noncarriers (44%); (OR = 7.1; C.I. = 1.36-37.1; P = 0.02). However, the adherence rate in carriers was unchanged from baseline, suggesting that this difference is attributable to a reduction in screening among noncarriers. Women ages 25-39 years were significantly less likely to obtain mammograms than those aged 40 years and older. Cancer-related distress had a positive but nonsignificant (P <0.07) association with adherence in bivariate but not multivariate analysis. With regard to ovarian risk, only 13% of carriers obtained prophylactic oophorectomy; of the remaining female carriers, only 21% reported a CA125 and 15% reported a transvaginal ultrasound. Conclusion. The vast majority of BRCA1/2 carriers may not opt for prophylactic surgery, and many do not adhere to surveillance recommendations. Greater attention to risk communication and medical decision-making is warranted. (C) 2000 American Health Foundation and Academic Press.

Original languageEnglish
Pages (from-to)75-80
Number of pages6
JournalPreventive Medicine
Volume31
Issue number1
DOIs
StatePublished - Jul 2000

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Breast Neoplasms
BRCA1 Gene
Genetic Testing
Ovariectomy
Mammography
Ovarian Neoplasms
Observational Studies
Multivariate Analysis
Communication
Prospective Studies
Mutation
Health
Neoplasms
Prophylactic Mastectomy
Clinical Decision-Making

All Science Journal Classification (ASJC) codes

  • Medicine(all)

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Prophylactic surgery decisions and surveillance practices one year following BRCA 1/2 testing. / Lerman, Caryn; Hughes, Chanita; Croyle, Robert T.; Main, David; Durham, Carolyn; Snyder, Carrie; Bonney, Aba; Lynch, Jane F.; Narod, Steven A.; Lynch, Henry T.

In: Preventive Medicine, Vol. 31, No. 1, 07.2000, p. 75-80.

Research output: Contribution to journalArticle

Lerman, C, Hughes, C, Croyle, RT, Main, D, Durham, C, Snyder, C, Bonney, A, Lynch, JF, Narod, SA & Lynch, HT 2000, 'Prophylactic surgery decisions and surveillance practices one year following BRCA 1/2 testing', Preventive Medicine, vol. 31, no. 1, pp. 75-80. https://doi.org/10.1006/pmed.2000.0684
Lerman, Caryn ; Hughes, Chanita ; Croyle, Robert T. ; Main, David ; Durham, Carolyn ; Snyder, Carrie ; Bonney, Aba ; Lynch, Jane F. ; Narod, Steven A. ; Lynch, Henry T. / Prophylactic surgery decisions and surveillance practices one year following BRCA 1/2 testing. In: Preventive Medicine. 2000 ; Vol. 31, No. 1. pp. 75-80.
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abstract = "Background. Although genetic testing for breast cancer risk is clinically available, its impact on health-related behaviors is unknown. This study examined prophylactic surgery and surveillance behavior during the year following BRCA1/2 gene testing. Methods. Participants were female members (n = 216) of hereditary breast-ovarian cancer families (84 mutation carriers, 83 noncarriers and 49 test decliners). In this prospective observational study, utilization of prophylactic surgery and surveillance behavior were assessed 1-year following BRCA1/2 testing. Results. Only 3{\%} of the unaffected carriers obtained prophylactic mastectomy during the 1-year follow-up period. Among the remaining females, carriers had significantly higher rates of mammography (68{\%}) than noncarriers (44{\%}); (OR = 7.1; C.I. = 1.36-37.1; P = 0.02). However, the adherence rate in carriers was unchanged from baseline, suggesting that this difference is attributable to a reduction in screening among noncarriers. Women ages 25-39 years were significantly less likely to obtain mammograms than those aged 40 years and older. Cancer-related distress had a positive but nonsignificant (P <0.07) association with adherence in bivariate but not multivariate analysis. With regard to ovarian risk, only 13{\%} of carriers obtained prophylactic oophorectomy; of the remaining female carriers, only 21{\%} reported a CA125 and 15{\%} reported a transvaginal ultrasound. Conclusion. The vast majority of BRCA1/2 carriers may not opt for prophylactic surgery, and many do not adhere to surveillance recommendations. Greater attention to risk communication and medical decision-making is warranted. (C) 2000 American Health Foundation and Academic Press.",
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N2 - Background. Although genetic testing for breast cancer risk is clinically available, its impact on health-related behaviors is unknown. This study examined prophylactic surgery and surveillance behavior during the year following BRCA1/2 gene testing. Methods. Participants were female members (n = 216) of hereditary breast-ovarian cancer families (84 mutation carriers, 83 noncarriers and 49 test decliners). In this prospective observational study, utilization of prophylactic surgery and surveillance behavior were assessed 1-year following BRCA1/2 testing. Results. Only 3% of the unaffected carriers obtained prophylactic mastectomy during the 1-year follow-up period. Among the remaining females, carriers had significantly higher rates of mammography (68%) than noncarriers (44%); (OR = 7.1; C.I. = 1.36-37.1; P = 0.02). However, the adherence rate in carriers was unchanged from baseline, suggesting that this difference is attributable to a reduction in screening among noncarriers. Women ages 25-39 years were significantly less likely to obtain mammograms than those aged 40 years and older. Cancer-related distress had a positive but nonsignificant (P <0.07) association with adherence in bivariate but not multivariate analysis. With regard to ovarian risk, only 13% of carriers obtained prophylactic oophorectomy; of the remaining female carriers, only 21% reported a CA125 and 15% reported a transvaginal ultrasound. Conclusion. The vast majority of BRCA1/2 carriers may not opt for prophylactic surgery, and many do not adhere to surveillance recommendations. Greater attention to risk communication and medical decision-making is warranted. (C) 2000 American Health Foundation and Academic Press.

AB - Background. Although genetic testing for breast cancer risk is clinically available, its impact on health-related behaviors is unknown. This study examined prophylactic surgery and surveillance behavior during the year following BRCA1/2 gene testing. Methods. Participants were female members (n = 216) of hereditary breast-ovarian cancer families (84 mutation carriers, 83 noncarriers and 49 test decliners). In this prospective observational study, utilization of prophylactic surgery and surveillance behavior were assessed 1-year following BRCA1/2 testing. Results. Only 3% of the unaffected carriers obtained prophylactic mastectomy during the 1-year follow-up period. Among the remaining females, carriers had significantly higher rates of mammography (68%) than noncarriers (44%); (OR = 7.1; C.I. = 1.36-37.1; P = 0.02). However, the adherence rate in carriers was unchanged from baseline, suggesting that this difference is attributable to a reduction in screening among noncarriers. Women ages 25-39 years were significantly less likely to obtain mammograms than those aged 40 years and older. Cancer-related distress had a positive but nonsignificant (P <0.07) association with adherence in bivariate but not multivariate analysis. With regard to ovarian risk, only 13% of carriers obtained prophylactic oophorectomy; of the remaining female carriers, only 21% reported a CA125 and 15% reported a transvaginal ultrasound. Conclusion. The vast majority of BRCA1/2 carriers may not opt for prophylactic surgery, and many do not adhere to surveillance recommendations. Greater attention to risk communication and medical decision-making is warranted. (C) 2000 American Health Foundation and Academic Press.

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