TY - JOUR
T1 - Preferences for breast cancer risk reduction among BRCA1/BRCA2 mutation carriers
T2 - a discrete-choice experiment
AU - Kathleen Cuningham Foundation Consortium for Research into Familial Breast Cancer
AU - Liede, Alexander
AU - Mansfield, Carol A.
AU - Metcalfe, Kelly A.
AU - Price, Melanie A.
AU - Snyder, Carrie
AU - Lynch, Henry T.
AU - Friedman, Sue
AU - Amelio, Justyna
AU - Posner, Joshua
AU - Narod, Steven A.
AU - Lindeman, Geoffrey J.
AU - Evans, D. Gareth
N1 - Funding Information:
The study team would like to thank all the women who participated in this research. The authors wish to acknowledge Angie Fairchild for instrument design, early data analysis, and overall study planning at RTI Health Solutions. Lisa Rezende and all the women who participated in the study from FORCE. David Hallett, Sophia Virani (University of Toronto), and Karen Tricker (University of Manchester) for ethics submissions and data collection efforts. Heather Thorne, Eveline Niedermayr, all the kConFab research nurses and staff, the heads and staff of the Family Cancer Clinics, and the Clinical Follow-Up Study (which has received funding from the National Health and Medical Research Council [NHMRC], the National Breast Cancer Foundation, Cancer Australia, and the National Institute of Health [US]) for their contributions to this resource, and the many families who contribute to kConFab. kConFab is supported by a grant from the National Breast Cancer Foundation, and previously by the NHMRC; the Queensland Cancer Fund; the Cancer Councils of New South Wales, Victoria, Tasmania and South Australia; and the Cancer Foundation of Western Australia.
Funding Information:
This work was supported by Amgen Inc.
Publisher Copyright:
© 2017, The Author(s).
PY - 2017/9/1
Y1 - 2017/9/1
N2 - Purpose: Unaffected women who carry BRCA1 or BRCA2 mutations face difficult choices about reducing their breast cancer risk. Understanding their treatment preferences could help us improve patient counseling and inform drug trials. The objective was to explore preferences for various risk-reducing options among women with germline BRCA1/2 mutations using a discrete-choice experiment survey and to compare expressed preferences with actual behaviors. Methods: A discrete-choice experiment survey was designed wherein women choose between hypothetical treatments to reduce breast cancer risk. The hypothetical treatments were characterized by the extent of breast cancer risk reduction, treatment duration, impact on fertility, hormone levels, risk of uterine cancer, and ease and mode of administration. Data were analyzed using a random-parameters logit model. Women were also asked to express their preference between surgical and chemoprevention options and to report on their actual risk-reduction actions. Women aged 25–55 years with germline BRCA1/2 mutations who were unaffected with breast or ovarian cancer were recruited through research registries at five clinics and a patient advocacy group. Results: Between January 2015 and March 2016, 622 women completed the survey. Breast cancer risk reduction was the most important consideration expressed, followed by maintaining fertility. Among the subset of women who wished to have children in future, the ability to maintain fertility was the most important factor, followed by the extent of risk reduction. Many more women said they would take a chemoprevention drug than had actually taken chemoprevention. Conclusions: Women with BRCA1/2 mutations indicated strong preferences for breast cancer risk reduction and maintaining fertility. The expressed desire to have a safe chemoprevention drug available to them was not met by current chemoprevention options.
AB - Purpose: Unaffected women who carry BRCA1 or BRCA2 mutations face difficult choices about reducing their breast cancer risk. Understanding their treatment preferences could help us improve patient counseling and inform drug trials. The objective was to explore preferences for various risk-reducing options among women with germline BRCA1/2 mutations using a discrete-choice experiment survey and to compare expressed preferences with actual behaviors. Methods: A discrete-choice experiment survey was designed wherein women choose between hypothetical treatments to reduce breast cancer risk. The hypothetical treatments were characterized by the extent of breast cancer risk reduction, treatment duration, impact on fertility, hormone levels, risk of uterine cancer, and ease and mode of administration. Data were analyzed using a random-parameters logit model. Women were also asked to express their preference between surgical and chemoprevention options and to report on their actual risk-reduction actions. Women aged 25–55 years with germline BRCA1/2 mutations who were unaffected with breast or ovarian cancer were recruited through research registries at five clinics and a patient advocacy group. Results: Between January 2015 and March 2016, 622 women completed the survey. Breast cancer risk reduction was the most important consideration expressed, followed by maintaining fertility. Among the subset of women who wished to have children in future, the ability to maintain fertility was the most important factor, followed by the extent of risk reduction. Many more women said they would take a chemoprevention drug than had actually taken chemoprevention. Conclusions: Women with BRCA1/2 mutations indicated strong preferences for breast cancer risk reduction and maintaining fertility. The expressed desire to have a safe chemoprevention drug available to them was not met by current chemoprevention options.
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U2 - 10.1007/s10549-017-4332-3
DO - 10.1007/s10549-017-4332-3
M3 - Article
C2 - 28624978
AN - SCOPUS:85020525251
VL - 165
SP - 433
EP - 444
JO - Breast Cancer Research and Treatment
JF - Breast Cancer Research and Treatment
SN - 0167-6806
IS - 2
ER -