Preferences for breast cancer risk reduction among BRCA1/BRCA2 mutation carriers: a discrete-choice experiment

Kathleen Cuningham Foundation Consortium for Research into Familial Breast Cancer

Research output: Contribution to journalArticle

6 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)433-444
Number of pages12
JournalBreast Cancer Research and Treatment
Volume165
Issue number2
DOIs
StatePublished - Sep 1 2017

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Risk Reduction Behavior
Breast Neoplasms
Mutation
Chemoprevention
Fertility
Pharmaceutical Preparations
Patient Advocacy
Uterine Neoplasms
Aptitude
Therapeutics
Ovarian Neoplasms
Registries
Counseling
Logistic Models
Hormones
Research

All Science Journal Classification (ASJC) codes

  • Oncology
  • Cancer Research

Cite this

Preferences for breast cancer risk reduction among BRCA1/BRCA2 mutation carriers : a discrete-choice experiment. / Kathleen Cuningham Foundation Consortium for Research into Familial Breast Cancer.

In: Breast Cancer Research and Treatment, Vol. 165, No. 2, 01.09.2017, p. 433-444.

Research output: Contribution to journalArticle

Kathleen Cuningham Foundation Consortium for Research into Familial Breast Cancer. / Preferences for breast cancer risk reduction among BRCA1/BRCA2 mutation carriers : a discrete-choice experiment. In: Breast Cancer Research and Treatment. 2017 ; Vol. 165, No. 2. pp. 433-444.
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abstract = "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.",
author = "{Kathleen Cuningham Foundation Consortium for Research into Familial Breast Cancer} and Alexander Liede and Mansfield, {Carol A.} and Metcalfe, {Kelly A.} and Price, {Melanie A.} and Carrie Snyder and Lynch, {Henry T.} and Lynch, {Henry T.} and Justyna Amelio and Joshua Posner and Narod, {Steven A.} and Lindeman, {Geoffrey J.} and Evans, {D. Gareth}",
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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 - Lynch, Henry T.

AU - Amelio, Justyna

AU - Posner, Joshua

AU - Narod, Steven A.

AU - Lindeman, Geoffrey J.

AU - Evans, D. Gareth

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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.

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