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Grant Details

Grant Number: 5R01CA082346-05 Interpret this number
Primary Investigator: Schwartz, Marc
Organization: Georgetown University
Project Title: Interactive Decision Aid for Brca 1/2 Mutation Carriers
Fiscal Year: 2003


DESCRIPTION (adapted from investigator's abstract): Since the identification of the BRCA1 and BRCA2 breast cancer susceptibility genes, genetic testing has become increasingly widespread. Women who inherit a BRCA1/2 mutation have a 55-85 percent lifetime risk of breast cancer. The primary medical decision facing these women is whether to have a prophylactic mastectomy (breast removal) or to receive yearly mammograms. Because limited data favor one of these options or the other, women are informed about the benefits and limitations of each and counseled to select an option consistent with their personal preference and values. Although a specific recommendation for surgery versus surveillance is not generally made, BRCA1/2 carriers who do not elect surgery are advised to obtain annual mammograms. Given the lack of clear guidelines, it is not surprising that medical decision-making is reported to be one of the most challenging and stressful consequences of receiving a positive BRCA1/2 gene test result, and many carriers fail to adopt either option. The goal of this project is to develop and evaluate an interactive CD-ROM-based decision-aid for women who have recently received a positive BRCA1/2 gene test result. We propose a randomized trial among BRCA1 and BRCA2 mutation carriers in which we will compare standard genetic counseling (SGC) to an enhanced genetic counseling condition that consists of the individualized decision-aid (IDA) delivered in conjunction with standard genetic counseling. The IDA will be based, in part, on Subjective Expected Utility theory. Utility theory suggests that in making choices, people select the option that maximizes positive outcomes and minimizes negative outcomes. The value that an individual places on a particular health outcome is referred to as her preference or utility. Literature on decision-making in other medical contexts suggests that decision-aid interventions guided by Utility theory can promote informed decision-making and enhance psychological well being. If effective, the IDA can easily be disseminated to BRCA1/2 carriers across the country and adapted for use with other populations with inherited risk for cancer.


Longitudinal changes in patient distress following interactive decision aid use among BRCA1/2 carriers: a randomized trial.
Authors: Hooker G.W. , Leventhal K.G. , DeMarco T. , Peshkin B.N. , Finch C. , Wahl E. , Joines J.R. , Brown K. , Valdimarsdottir H. , Schwartz M.D. .
Source: Medical decision making : an international journal of the Society for Medical Decision Making, 2011 May-Jun; 31(3), p. 412-21.
EPub date: 2010-09-27.
PMID: 20876346
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BRCA1/2 test results impact risk management attitudes, intentions, and uptake.
Authors: O'Neill S.C. , Valdimarsdottir H.B. , Demarco T.A. , Peshkin B.N. , Graves K.D. , Brown K. , Hurley K.E. , Isaacs C. , Hecker S. , Schwartz M.D. .
Source: Breast cancer research and treatment, 2010 Dec; 124(3), p. 755-64.
EPub date: 2010-04-10.
PMID: 20383578
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Distress among women receiving uninformative BRCA1/2 results: 12-month outcomes.
Authors: O'Neill S.C. , Rini C. , Goldsmith R.E. , Valdimarsdottir H. , Cohen L.H. , Schwartz M.D. .
Source: Psycho-oncology, 2009 Oct; 18(10), p. 1088-96.
PMID: 19214961
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Cognitive and emotional factors predicting decisional conflict among high-risk breast cancer survivors who receive uninformative BRCA1/2 results.
Authors: Rini C. , O'Neill S.C. , Valdimarsdottir H. , Goldsmith R.E. , Jandorf L. , Brown K. , DeMarco T.A. , Peshkin B.N. , Schwartz M.D. .
Source: Health psychology : official journal of the Division of Health Psychology, American Psychological Association, 2009 Sep; 28(5), p. 569-578.
PMID: 19751083
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Brief assessment of parents' attitudes toward testing minor children for hereditary breast/ovarian cancer genes: development and validation of the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS).
Authors: Peshkin B.N. , DeMarco T.A. , Garber J.E. , Valdimarsdottir H.B. , Patenaude A.F. , Schneider K.A. , Schwartz M.D. , Tercyak K.P. .
Source: Journal of pediatric psychology, 2009 Jul; 34(6), p. 627-38.
EPub date: 2008-04-01.
PMID: 18385162
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Randomized trial of a decision aid for BRCA1/BRCA2 mutation carriers: impact on measures of decision making and satisfaction.
Authors: Schwartz M.D. , Valdimarsdottir H.B. , DeMarco T.A. , Peshkin B.N. , Lawrence W. , Rispoli J. , Brown K. , Isaacs C. , O'Neill S. , Shelby R. , et al. .
Source: Health psychology : official journal of the Division of Health Psychology, American Psychological Association, 2009 Jan; 28(1), p. 11-19.
PMID: 19210013
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Changes in diet and physical activity following BRCA1/2 testing.
Authors: O'Neill S.C. , Kaufman E. , DeMarco T. , Peshkin B.N. , McKenna K. , Shelby R. , Valdimarsdottir H. , Rispoli J. , Schwartz M.D. .
Source: Journal of psychosocial oncology, 2008; 26(3), p. 63-80.
PMID: 19042265
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Predictors of enrollment into a familial cancer registry by individuals at high risk for BRCA1/2.
Authors: Graves K.D. , Moss L.M. , Jasper C.L. , DeMarco T.A. , Peshkin B.N. , Isaacs C. , Schwartz M.D. .
Source: Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology, 2007 Dec; 16(12), p. 2763-7.
PMID: 18086785
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Information needs of mothers regarding communicating BRCA1/2 cancer genetic test results to their children.
Authors: Tercyak K.P. , Peshkin B.N. , Demarco T.A. , Patenaude A.F. , Schneider K.A. , Garber J.E. , Valdimarsdottir H.B. , Schwartz M.D. .
Source: Genetic testing, 2007 Fall; 11(3), p. 249-55.
PMID: 17949286
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Tolerance for uncertainty and perceived risk among women receiving uninformative BRCA1/2 test results.
Authors: O'Neill S.C. , DeMarco T. , Peshkin B.N. , Rogers S. , Rispoli J. , Brown K. , Valdimarsdottir H. , Schwartz M.D. .
Source: American journal of medical genetics. Part C, Seminars in medical genetics, 2006-11-15; 142C(4), p. 251-9.
PMID: 17024668
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Decision making and decision support for hereditary breast-ovarian cancer susceptibility.
Authors: Schwartz M.D. , Peshkin B.N. , Tercyak K.P. , Taylor K.L. , Valdimarsdottir H. .
Source: Health psychology : official journal of the Division of Health Psychology, American Psychological Association, 2005 Jul; 24(4S), p. S78-84.
PMID: 16045423
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Associations between relationship support and psychological reactions of participants and partners to BRCA1 and BRCA2 testing in a clinic-based sample.
Authors: Manne S. , Audrain J. , Schwartz M. , Main D. , Finch C. , Lerman C. .
Source: Annals of behavioral medicine : a publication of the Society of Behavioral Medicine, 2004 Dec; 28(3), p. 211-25.
PMID: 15576260
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