Adaptation to Living With a BRCA1/2 Mutation
| Status: | Completed |
|---|---|
| Conditions: | Cancer, Cancer |
| Therapuetic Areas: | Oncology |
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 4/17/2018 |
| Start Date: | May 2, 2013 |
| End Date: | February 20, 2014 |
Adaptation to Living With a BRCA l/2 Mutation in Carriers and Their Partners
Background:
- Women who have a BRCA1/2 gene mutation have a very high risk of developing breast or
ovarian cancer. They are also at increased risk of other developing other cancers. Male
carriers are at increased risk for breast, prostate and other cancers. Testing for this
mutation and living with this increased risk can be a source of stress for both people with
the mutation and their partners. Researchers want to look at how well people adapt to living
with this type of cancer risk over time.
Objectives:
- To see how women with the BRCA1/2 gene mutation and their partners adapt to the stress of
long-term cancer risk.
Eligibility:
- Women at least 18 years of age who have a BRCA1/2 mutation, and their male or female
partners.
Design:
- This study involves a one-time self-administered questionnaire. Participants will be
recruited from local and national hereditary cancer support groups and cancer centers.
- There are two versions of the survey. One is for the woman with the BRCA1/2 gene
mutation. The other is for her partner.
- The survey will ask about risk perception, cancer worry, risk-related stress, and coping
and adaptation methods.
- Treatment will not be provided as part of this study.
- Women who have a BRCA1/2 gene mutation have a very high risk of developing breast or
ovarian cancer. They are also at increased risk of other developing other cancers. Male
carriers are at increased risk for breast, prostate and other cancers. Testing for this
mutation and living with this increased risk can be a source of stress for both people with
the mutation and their partners. Researchers want to look at how well people adapt to living
with this type of cancer risk over time.
Objectives:
- To see how women with the BRCA1/2 gene mutation and their partners adapt to the stress of
long-term cancer risk.
Eligibility:
- Women at least 18 years of age who have a BRCA1/2 mutation, and their male or female
partners.
Design:
- This study involves a one-time self-administered questionnaire. Participants will be
recruited from local and national hereditary cancer support groups and cancer centers.
- There are two versions of the survey. One is for the woman with the BRCA1/2 gene
mutation. The other is for her partner.
- The survey will ask about risk perception, cancer worry, risk-related stress, and coping
and adaptation methods.
- Treatment will not be provided as part of this study.
The proposed study aims to describe adaptation and dyadic adjustment in unaffected BRCA1/2
carriers and their partners. It is not fully understood how women and their partners adapt to
highrisk status over time, nor how different aspects of living at risk relate to this
process. Neither psychological adaptation nor dyadic adjustment has been systematically
measured in this population. This study is informed by Lazarus & Folkman s Transactional
Model of Stress and Coping and modifications made to this model for use in studying dyadic
relationships. A crosssectional research design will quantitatively explore the relationships
between the appraisals and timing of risk-related stressors, dyadic coping, and the outcomes
of adaptation and dyadic adjustment. Participants will be recruited from hereditary breast
and ovarian cancer (HBOC) support groups, website postings, listservs, and clinic patient
lists. They will have the option of completing either a paper or online version of the
survey.
carriers and their partners. It is not fully understood how women and their partners adapt to
highrisk status over time, nor how different aspects of living at risk relate to this
process. Neither psychological adaptation nor dyadic adjustment has been systematically
measured in this population. This study is informed by Lazarus & Folkman s Transactional
Model of Stress and Coping and modifications made to this model for use in studying dyadic
relationships. A crosssectional research design will quantitatively explore the relationships
between the appraisals and timing of risk-related stressors, dyadic coping, and the outcomes
of adaptation and dyadic adjustment. Participants will be recruited from hereditary breast
and ovarian cancer (HBOC) support groups, website postings, listservs, and clinic patient
lists. They will have the option of completing either a paper or online version of the
survey.
- INCLUSION AND EXCLUSION CRITERIA:
Participants will be women aged 18 or older who have a BRCA1/2 mutation and their (male or
female) partners. Carriers must have no personal history of cancer, but partners will not
be excluded based on cancer history. Participants will be asked to disclose their mutation
status (BRCA1 or BRCA2), but no screening evaluation will be required. If only one member
of a couple completes the survey, their data will be included in the individual level
analysis, but excluded from the dyadic level analysis.
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