© 1997 by Oxford University Press
Journal Of The National Cancer Institute, Vol 89, 148-157, Copyright © 1997 by Oxford University Press
C Lerman, B Biesecker, JL Benkendorf, J Kerner, A Gomez-Caminero, C Hughes and MM Reed
BACKGROUND: In response to the isolation of the BRCA1 gene, a breast-
ovarian cancer-susceptibility gene, biotechnology companies are already
marketing genetic tests to health care providers and to the public. Initial
studies indicate interest in BRCA1 testing in the general public and in
populations at high risk. However, the optimal strategies for educating and
counseling individuals have yet to be determined. PURPOSE: Our goal was to
evaluate the impact of alternate strategies for pretest education and
counseling on decision-making regarding BRCA1 testing among women at low to
moderate risk who have a family history of breast and/or ovarian cancer.
METHODS: A randomized trial design was used to evaluate the effects of
education only (educational approach) and education plus counseling
(counseling approach), as compared with a waiting-list (control) condition
(n = 400 for all groups combined). The educational approach reviewed
information about personal risk factors, inheritance of cancer
susceptibility, the benefits, limitations, and risks of BRCA1 testing, and
cancer screening and prevention options. The counseling approach included
this information, as well as a personalized discussion of experiences with
cancer in the family and the potential psychological and social impact of
testing. Data on knowledge of inherited cancer and BRCA1 test
characteristics, perceived risk, perceived benefits, limitations and risks
of BRCA1 testing, and testing intentions were collected by use of
structured telephone interviews at baseline and at 1-month follow-up.
Provision of a blood sample for future testing served as a proxy measure of
intention to be tested (in the education and counseling arms of the study).
The effects of intervention group on study outcomes were evaluated by use
of hierarchical linear regression modeling and logistic regression modeling
(for the blood sample outcome). All P values are for two-sided tests.
RESULTS: The educational and counseling approaches both led to significant
increases in knowledge, relative to the control condition (P < .001 for
both). The counseling approach, but not the educational approach, was
superior to the control condition in producing significant increases in
perceived limitations and risks of BRCA1 testing (P < .01) and decreases
in perceived benefits (P < .05). However, neither approach produced
changes in intentions to have BRCA1 testing. Prior to and following both
education only and education plus counseling, approximately one half of the
participants stated that they intended to be tested; after the session, 52%
provided a blood sample. CONCLUSIONS: Standard educational approaches may
be equally effective as expanded counseling approaches in enhancing
knowledge. Since knowledge is a key aspect of medical decision-making,
standard education may be adequate in situations where genetic testing must
be streamlined. On the other hand, it has been argued that optimal
decision-making requires not only knowledge, but also a reasoned evaluation
of the positive and negative consequences of alternate decisions. Although
the counseling approach is more likely to achieve this goal, it may not
diminish interest in testing, even among women at low to moderate risk.
Future research should focus on the merits of these alternate approaches
for subgroups of individuals with different backgrounds who are being
counseled in the variety of settings where BRCA1 testing is likely to be
offered.
ARTICLES
Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing
Lombardi Cancer Center, Georgetown University Medical Center, Washington, DC 20007, USA.
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