title: Evaluation of the needs of spouses of female carriers of mutations in BRCA1 and BRCA2.
abstract: The process of genetic testing involves the entire family, including spouses. The objective of this study was to measure the specific needs and to describe the experiences of spouses of women who received genetic counseling for a positive BRCA1/2 result. We surveyed 59 spouses of female mutation carriers. The mean length of relationships was 26 years (range: 2.5-50 years). All were supportive of their spouses' decision to undergo genetic testing and counselling. Four respondents stated that they wished that they had received additional support at the time of test disclosure and 20% felt that their wives had received inadequate support. One-quarter of the spouses believed that their relationship had changed because of genetic testing; most felt that they had become closer to their wives. Husbands were most concerned about the risk of their wife dying of cancer (43%), followed by the risk of their spouse developing cancer (19%) and the risk that their children would test positive for the BRCA mutation (14%). Distress levels, measured by the Impact of Event scale, suggest that few spouses were experiencing clinical levels of distress.
authors.affiliation: Center for Research in Women's Health, University of Toronto, Toronto, Ontario, Canada.
authors.forename: K A
authors.initials: KA
authors.lastname: Metcalfe
authors.forename: A
authors.initials: A
authors.lastname: Liede
authors.forename: M
authors.initials: M
authors.lastname: Trinkaus
authors.forename: D
authors.initials: D
authors.lastname: Hanna
authors.forename: S A
authors.initials: SA
authors.lastname: Narod
mesh_terms: D000328:Adult; D000367:Age Factors; D000368:Aged; D004493:Education; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D006580:Genetic Carrier Screening; D005820:Genetic Testing / Q000523:psychology; D006579:Heterozygote; D006801:Humans; D008297:Male; D008875:Middle Aged; D009154:Mutation; D010549:Personal Satisfaction; D018454:Spouses / Q000523:psychology*; D013315:Stress, Psychological / Q000209:etiology; D011795:Surveys and Questionnaires