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Differences Between Women Who Pursued Genetic Testing for Hereditary Breast and Ovarian Cancer and Their At-Risk Relatives Who Did Not

Maria C. Katapodi
Laurel Northouse
Penny Pierce
Kara J. Milliron
Guipeng Liu
Sofia D. Merajver
ONF 2011, 38(5), 572-581 DOI: 10.1188/11.ONF.572-581

Purpose/Objectives: To (a) examine differences in appraisals of hereditary breast and ovarian cancer (HBOC), psychological distress, family environment, and decisional conflict between women who pursued genetic testing and their at-risk relatives who did not, and (b) examine correlations among appraisals of HBOC, psychological distress, family environment, and decisional conflict regarding genetic testing in these two cohorts of women.

Design: Descriptive, cross-sectional cohort study.

Setting: Two clinics affiliated with a major research university in the midwestern United States.

Sample: 372 women aged 18 years and older. 200 pursued genetic testing for BRCA1 and BRCA2 mutations (probands) and 172 of their female relatives who had a greater than 10% prior probability of being a mutation carrier but had not pursued testing.

Methods: After providing informed consent, probands and relatives were mailed self-administered questionnaires.

Main Research Variables: Perceived risk, knowledge of HBOC risk factors and modes of gene inheritance, perceived severity, perceived controllability, psychological distress, family relationships, family communication, and decisional conflict about genetic testing.

Findings: T tests revealed that probands perceived higher risk and had more psychological distress associated with breast cancer. Probands had more knowledge regarding risk factors and gene inheritance, and greater decisional conflict regarding genetic testing. Relatives reported higher perceived severity and controllability. No differences were observed in family relationships and family communication between probands and relatives. Pearson correlations revealed different patterns in knowledge, perceived controllability, family relationships, and decisional conflict between probands and relatives.

Conclusions: Significant differences exist between women who pursue genetic testing and those who do not. The family environment influences adjustment to HBOC and decisions about genetic testing.

Implications for Nursing: Enhancing the family communication process about HBOC can provide informational and emotional support to high-risk women and promote decision making about genetic testing.

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