Family Communication of Hereditary Breast and Ovarian Cancer Risk Among African Americans
| Status: | Terminated |
|---|---|
| Conditions: | Breast Cancer, Ovarian Cancer, Cancer, Cancer, Cancer |
| Therapuetic Areas: | Oncology |
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 4/5/2019 |
| Start Date: | June 7, 2011 |
| End Date: | January 7, 2016 |
Family Communication of Hereditary Cancer Risk Among African Americans
Background:
- Certain genetic mutations are linked to higher rates of cancer. It is important for people
with these mutations to tell their families about it. This is because others in the family
may also be at greater risk for developing these cancers. They can also pass these genes to
their own children. But not much is known about how African Americans tell their family
members about the results of their genetic testing. The information from this study can be
used to improve genetic counseling services. These services will then be more effective in
early cancer detection and prevention in the African American community.
Objectives:
- To learn more about how African Americans who have tested positive for BRCA1/2 mutations
tell their families about their genetic risk.
Eligibility:
- African American (or of African descent) women who recently received positive test results
for BRCA1/2 mutations.
Design:
- Participants will be screened with a basic medical history.
- They will be asked general questions about their personal and family history. These
include questions on marital and health insurance status, education, and income.
- Those in the study will have a 45- to 60-minute phone interview. They will answer
questions about how they told their family members about their genetic test results.
They will also be asked what that experience was like.
- Certain genetic mutations are linked to higher rates of cancer. It is important for people
with these mutations to tell their families about it. This is because others in the family
may also be at greater risk for developing these cancers. They can also pass these genes to
their own children. But not much is known about how African Americans tell their family
members about the results of their genetic testing. The information from this study can be
used to improve genetic counseling services. These services will then be more effective in
early cancer detection and prevention in the African American community.
Objectives:
- To learn more about how African Americans who have tested positive for BRCA1/2 mutations
tell their families about their genetic risk.
Eligibility:
- African American (or of African descent) women who recently received positive test results
for BRCA1/2 mutations.
Design:
- Participants will be screened with a basic medical history.
- They will be asked general questions about their personal and family history. These
include questions on marital and health insurance status, education, and income.
- Those in the study will have a 45- to 60-minute phone interview. They will answer
questions about how they told their family members about their genetic test results.
They will also be asked what that experience was like.
The ways in which family members communicate with one another about hereditary cancer risk
may have a significant impact on screening use and choices about predictive genetic testing.
There have been many studies examining aspects of family communication of hereditary cancer
risk but few have included a significant number of African American families. The lack of
studies addressing how African American patients communicate about genetic risks for cancer
with their relatives is a hindrance to facilitating communication strategies in this patient
population. The proposed study is a mixed methods investigation aimed at understanding how
communication of hereditary breast and ovarian cancer risk occurs in African American
families. This study will seek to describe how African American women communicate with their
family members about the information received during the genetic counseling process for
BRCA1/2 genetic testing by analyzing data from two sources. The data collected from data
source one of this study will be from female analogue clients who were recruited from the
general population in Baltimore, Maryland to watch a videotape of a pre-test cancer genetic
counseling session. The analogue clients were asked to imagine they were the patients in the
visit and to respond to several open-ended questions about what they would tell their family
members about what they learned from the session. A quantitative content analysis of the data
from the open-ended responses will be conducted to identify the frequency of commonly stated
words, phrases and concepts related to the respondents characterization of the content of
their family communication. From data source one of this study, we will obtain information on
what women report they would share with their family members and the words they report they
would use. Data source two of this study will involve in-depth qualitative interviews with 40
African American women who have tested positive for a BRCA1/2 mutation. These interviews will
seek to understand how test results and information from the genetic counseling process were
actually shared with family members. These interviews will seek to not only further describe
what information individuals reported sharing with their family members but also how the
process of communication unfolded. From these two forms of data, this study will describe the
family communication process of hereditary cancer risk among African American women.
may have a significant impact on screening use and choices about predictive genetic testing.
There have been many studies examining aspects of family communication of hereditary cancer
risk but few have included a significant number of African American families. The lack of
studies addressing how African American patients communicate about genetic risks for cancer
with their relatives is a hindrance to facilitating communication strategies in this patient
population. The proposed study is a mixed methods investigation aimed at understanding how
communication of hereditary breast and ovarian cancer risk occurs in African American
families. This study will seek to describe how African American women communicate with their
family members about the information received during the genetic counseling process for
BRCA1/2 genetic testing by analyzing data from two sources. The data collected from data
source one of this study will be from female analogue clients who were recruited from the
general population in Baltimore, Maryland to watch a videotape of a pre-test cancer genetic
counseling session. The analogue clients were asked to imagine they were the patients in the
visit and to respond to several open-ended questions about what they would tell their family
members about what they learned from the session. A quantitative content analysis of the data
from the open-ended responses will be conducted to identify the frequency of commonly stated
words, phrases and concepts related to the respondents characterization of the content of
their family communication. From data source one of this study, we will obtain information on
what women report they would share with their family members and the words they report they
would use. Data source two of this study will involve in-depth qualitative interviews with 40
African American women who have tested positive for a BRCA1/2 mutation. These interviews will
seek to understand how test results and information from the genetic counseling process were
actually shared with family members. These interviews will seek to not only further describe
what information individuals reported sharing with their family members but also how the
process of communication unfolded. From these two forms of data, this study will describe the
family communication process of hereditary cancer risk among African American women.
- INCLUSION CRITERIA:
Understands and speaks English
African American
Women
18 years or older
Has had genetic testing for BRCA1/2 mutations
We found this trial at
1
site
9000 Rockville Pike
Bethesda, Maryland 20892
Bethesda, Maryland 20892
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