Knowledge, attitudes, and interest in breast-ovarian cancer gene testing:: A survey of a large African-American kindred with a BRCA1 mutation

Knowledge, attitudes, and interest in breast-ovarian cancer gene testing:: A survey of a large African-American kindred with a BRCA1 mutation
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DOI:
10.1006/pmed.2001.0920
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发表时间:
2001-12-01
影响因子:
5.1
通讯作者:
Neuhausen, SL
Neuhausen, SL
中科院分区:
医学2区
文献类型:
--
作者:
Kinney, AY;Croyle, RT;Neuhausen, SL

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背景本研究从一个BRCA 1突变的非洲裔美国人家族的成年成员的角度评估了咨询和检测需求。对95名男性和女性亲属进行访谈,以了解社会人口统计学信息、对医疗保健提供者的态度、乳腺癌筛查行为和宗教/精神信仰,以及评估与基因检测相关的心理困扰、信仰、知识和态度。关于乳腺癌和卵巢癌遗传学的知识有限。没有乳腺癌或卵巢癌病史的女性对筛查建议的依从性较低。大多数人(67%)希望与医疗保健提供者讨论风险因素。大多数参与者(82%)表示,如果可以的话,他们会进行基因检测。有至少一个一级亲属患有乳腺癌和/或卵巢癌,(OR=5.1; 95%CI =1.2-20.9)和感知的基因携带者风险大于或等于50%(OR = 64.3; 95%CI =5.1-803.9)或报告他们不知道自己是基因携带者的风险(OR = 10.9; 95%CI =2.1-57.7)。引用的测试障碍包括成本和可用性。尽管这些高风险的非洲裔美国人对癌症遗传学的知识有限,但对基因检测的兴趣很高。我们的研究提供了信息,设计一个遗传教育和咨询干预这个和类似的家庭。(C)2001年美国健康基金会和爱思唯尔科学。
Background. This study assessed counseling and testing needs from the perspective of adult members of a large African-American kindred with a BRCA1 mutation.Methods. Interviews were conducted with 95 male and female kindred members to elicit information on sociodemographics, attitudes toward health care providers, breast cancer screening behaviors, and religious/spiritual beliefs, as well as to evaluate psychological distress, beliefs, knowledge, and attitudes related to genetic testing.Results. Knowledge about breast and ovarian cancer genetics was limited. Adherence to screening recommendations was low among females with no persona breast or ovarian cancer history. The majority (67%) wished to discuss risk factors with a health care provider. Most participants (82%) indicated that they would have a genetic test if it were available. Significant predictors of intent to undergo testing were having at least one first-degree relative with breast and/or ovarian cancer (OR=5.1; 95% CI=1.2-20.9) and perceived risk of being a gene carrier greater than or equal to50% (OR = 64.3; 95% CI=5.1-803.9) or reporting that they did not know their risk of being a gene carrier (OR = 10.9; 95% CI=2.1-57.7). Cited barriers to testing included cost and availability.Conclusion. There is a high interest level in genetic testing despite limited knowledge about cancer genetics among these high-risk African Americans. Our study provides information for designing a genetic education and counseling intervention for this and similar families. (C) 2001 American Health Foundation and Elsevier Science.