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Adaptation to Living With a BRCA l/2 Mutation in Carriers and Their Partners

18 Years
Open (Enrolling)
Cancer Genetics

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Trial Information

Adaptation to Living With a BRCA l/2 Mutation in Carriers and Their Partners

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.

Inclusion 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.

Type of Study:


Study Design:

Time Perspective: Retrospective

Outcome Measure:

the primary outcome is psychological adaptation

Outcome Time Frame:

1 time survey

Safety Issue:


Principal Investigator

Gillian W Hooker, Ph.D.

Investigator Role:

Principal Investigator

Investigator Affiliation:

National Human Genome Research Institute (NHGRI)


United States: Federal Government

Study ID:




Start Date:

May 2013

Completion Date:

May 2016

Related Keywords:

  • Cancer Genetics
  • BRCA1
  • BRCA2



Johns Hopkins Bloomberg School of Public HealthBaltimore, Maryland