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纽约市有风险的拉丁裔女性对BRCA基因咨询的兴趣和看法。

Interest and beliefs about BRCA genetic counseling among at-risk Latinas in New York City.

作者信息

Sussner Katarina M, Jandorf Lina, Thompson Hayley S, Valdimarsdottir Heiddis B

机构信息

Department of Oncological Sciences, Division of Cancer Prevention and Control, Mount Sinai School of Medicine, One Gustave L. Levy Place, 1425 Madison Ave, Box 1130, New York, NY 10029, USA.

出版信息

J Genet Couns. 2010 Jun;19(3):255-68. doi: 10.1007/s10897-010-9282-4. Epub 2010 Feb 12.

Abstract

BACKGROUND

Latinas are less likely to use genetic services (counseling and testing) for hereditary breast and/or ovarian cancer risk compared to other ethnic groups. Meanwhile, little is known about barriers to genetic counseling among Latinas at increased risk of inherited breast cancer.

METHODS

A two-phase pilot study was conducted to examine interest, barriers and beliefs about BRCA genetic counseling among at-risk Latinas in New York City and explore the potential for developing a culturally-tailored narrative educational tool for use in future studies. Phase 1 included quantitative telephone interviews (N = 15) with bilingual participants with a personal diagnosis at a young age and/or family history of breast and/or ovarian cancer. Quantitative results informed development of a narrative prototype educational presentation viewed by a subset of participants (N = 10) in Phase 2 focus groups.

RESULTS

Despite barriers, including lack of awareness/knowledge, concerns related to learning cancer risks of family members, and concerns about cost/health insurance, participants reported positive attitudes, beliefs and interest in learning about BRCA genetic counseling. Further, significant increases in knowledge were demonstrated from pre-post presentation (p = 0.04).

CONCLUSION

There is an unmet need to educate at-risk Latinas about BRCA genetic counseling. Culturally-tailored educational materials including narratives may increase knowledge about BRCA genetic counseling among this underserved group. The effectiveness of these approaches should be tested in future research with larger samples.

摘要

背景

与其他种族群体相比,拉丁裔女性因遗传性乳腺癌和/或卵巢癌风险而使用基因服务(咨询和检测)的可能性较小。与此同时,对于遗传性乳腺癌风险增加的拉丁裔女性在接受基因咨询时所面临的障碍知之甚少。

方法

开展了一项两阶段的试点研究,以调查纽约市有风险的拉丁裔女性对BRCA基因咨询的兴趣、障碍和看法,并探索开发一种文化定制的叙事性教育工具以供未来研究使用的可能性。第一阶段包括对双语参与者进行定量电话访谈(N = 15),这些参与者在年轻时被个人诊断患有乳腺癌和/或卵巢癌,或有相关家族病史。定量结果为第二阶段焦点小组中的一部分参与者(N = 10)所观看的叙事性原型教育演示文稿的开发提供了参考。

结果

尽管存在障碍,包括缺乏认识/知识、担心了解家庭成员的癌症风险以及担心费用/医疗保险,但参与者报告了对学习BRCA基因咨询的积极态度、看法和兴趣。此外,演示前后的知识有显著增加(p = 0.04)。

结论

有必要对有风险的拉丁裔女性进行BRCA基因咨询教育,这一需求尚未得到满足。包括叙事在内的文化定制教育材料可能会增加这一服务不足群体对BRCA基因咨询的了解。这些方法的有效性应在未来更大样本的研究中进行测试。

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