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 |
Abstract
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.
Publications
None