Evaluation of the needs of spouses of female carriers of mutations in BRCA1 and BRCA2

Evaluation of the needs of spouses of female carriers of mutations in BRCA1 and BRCA2
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DOI:
10.1034/j.1399-0004.2002.620607.x
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发表时间:
2002-12-01
期刊:
影响因子:
3.5
通讯作者:
Narod, SA
Narod, SA
中科院分区:
医学2区
文献类型:
--
作者:
Metcalfe, KA;Liede, A;Narod, SA

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基因检测的过程涉及整个家庭,包括配偶。本研究的目的是衡量的具体需求,并描述的经验,妇女的配偶接受遗传咨询的积极BRCA 1/2结果。我们调查了59名女性突变携带者的配偶。平均关系长度为26年(范围:2.5-50年)。所有人都支持他们的配偶接受基因检测和咨询的决定。四名受访者表示,他们希望在测试披露时得到更多的支持,20%的人认为他们的妻子得到的支持不足。四分之一的配偶认为他们的关系因为基因检测而改变;大多数人认为他们与妻子变得更亲密。丈夫最担心妻子死于癌症的风险(43%),其次是配偶患癌症的风险(19%)和子女BRCA突变检测阳性的风险(14%)。通过事件影响量表测量的痛苦水平表明,很少有配偶经历过临床水平的痛苦。
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.