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参与具有 BRCA 相关癌症风险的男性:来自男性利益相关者的 BRCA 风险管理实用建议。

Engaging Men With BRCA-Related Cancer Risks: Practical Advice for BRCA Risk Management From Male Stakeholders.

机构信息

Department of Communication, Collaborator Member of the Health Outcomes & Behavior Program, Moffitt Cancer Center, the University of South Florida, Tampa, FL, USA.

Geisinger Health System, Danville, PA, USA.

出版信息

Am J Mens Health. 2020 May-Jun;14(3):1557988320924932. doi: 10.1177/1557988320924932.

DOI:10.1177/1557988320924932
PMID:32449425
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7249566/
Abstract

Men are at risk for developing hereditary cancers such as breast, prostate, pancreatic, and melanoma due to a pathogenic germline variant in either the or gene. The purpose of this study was to identify and provide practical advice for men managing their BRCA-related cancer risks based on men's real-life experiences. Semistructured interviews were conducted with 25 men who either tested positive for a pathogenic variant in gene or who had an immediate family member who had tested positive for a pathogenic variant in . A thematic analysis of the interview transcripts was completed utilizing the constant comparison method. Qualitative analysis produced three categories of participant advice for men who recently learned of their hereditary cancer risk. Specifically, participants advised the following: (a) know the basics, (b) engage in the family narrative, and (c) advocate for yourself. Results showed the need for men to know and understand their BRCA cancer risks and communicate that genetic risk information to their family members and practitioners. In particular, the findings stress the importance of addressing men's risks and medical management from a family-focused approach. Overall, because men are historically undereducated about their BRCA-related cancer risks, this practical advice serves as a first step for men managing BRCA-related cancer risks and may ultimately assist them in making preventive and screening health behaviors.

摘要

男性由于 或 基因中的致病变异体而面临罹患遗传性癌症(如乳腺癌、前列腺癌、胰腺癌和黑色素瘤)的风险。本研究的目的是根据男性的真实生活经验,确定并为管理 BRCA 相关癌症风险的男性提供实用建议。对 25 名经基因检测呈致病变异体阳性或直系亲属经基因检测呈致病变异体阳性的男性进行了半结构化访谈。利用恒定性比较法对访谈记录进行了主题分析。定性分析得出了男性最近了解到其遗传性癌症风险后的三条建议类别。具体而言,参与者建议:(a)了解基础知识,(b)参与家庭叙述,以及(c)为自己争取权益。研究结果表明,男性需要了解和理解他们的 BRCA 癌症风险,并将遗传风险信息传达给他们的家庭成员和医生。特别是,研究结果强调了从以家庭为中心的角度来解决男性风险和医疗管理的重要性。总体而言,由于男性对其 BRCA 相关癌症风险的教育历来不足,因此这些实用建议为男性管理 BRCA 相关癌症风险提供了第一步,最终可能有助于他们采取预防性和筛查性的健康行为。

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本文引用的文献

1
Family storytelling about hereditary cancer: Framing shared understandings of risk.家族遗传性癌症故事讲述:构建风险的共同认知。
J Genet Couns. 2020 Dec;29(6):936-948. doi: 10.1002/jgc4.1218. Epub 2020 Jan 22.
2
"How do we rally around the one who was positive?" Familial uncertainty management in the context of men managing BRCA-related cancer risks.我们如何团结那个阳性患者?男性管理 BRCA 相关癌症风险背景下的家庭不确定性管理。
Soc Sci Med. 2019 Dec;242:112592. doi: 10.1016/j.socscimed.2019.112592. Epub 2019 Oct 11.
3
New name for breast-cancer syndrome could help to save lives.乳腺癌综合征的新名称可能有助于挽救生命。
Nature. 2019 Jul;571(7763):27-29. doi: 10.1038/d41586-019-02015-7.
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Patterns of Communicating About Family Health History: Exploring Differences in Family Types, Age, and Sex.家族健康史的沟通模式:探究家庭类型、年龄和性别的差异
Health Educ Behav. 2019 Oct;46(5):809-817. doi: 10.1177/1090198119853002. Epub 2019 Jun 18.
5
Expectations versus reality: The impact of men's expectancy violations in conversations with healthcare providers about BRCA-related cancer risks.期望与现实:男性在与医疗保健提供者就 BRCA 相关癌症风险进行交谈时的期望违背对其产生的影响。
Patient Educ Couns. 2019 Sep;102(9):1650-1655. doi: 10.1016/j.pec.2019.04.010. Epub 2019 Apr 6.
6
Men's and Women's Approaches to Disclosure About BRCA-Related Cancer Risks and Family Planning Decision-Making.男性和女性对 BRCA 相关癌症风险和生育计划决策的披露方式。
Qual Health Res. 2018 Dec;28(14):2155-2168. doi: 10.1177/1049732318788377. Epub 2018 Jul 27.
7
"I Am Uncertain About What My Uncertainty Even Is": Men's Uncertainty and Information Management of Their BRCA-Related Cancer Risks.“我甚至不确定我的不确定性是什么”:男性对其与BRCA相关的癌症风险的不确定性及信息管理
J Genet Couns. 2018 Dec;27(6):1417-1427. doi: 10.1007/s10897-018-0276-y. Epub 2018 Jul 3.
8
Male BRCA mutation carriers: clinical characteristics and cancer spectrum.男性 BRCA 基因突变携带者:临床特征和癌症谱。
BMC Cancer. 2018 Feb 13;18(1):179. doi: 10.1186/s12885-018-4098-y.
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"Second-Class Status?" Insight into Communication Patterns and Common Concerns Among Men with Hereditary Breast and Ovarian Cancer Syndrome.“二等公民身份?”深入了解遗传性乳腺癌和卵巢癌综合征男性的沟通模式及常见担忧
J Genet Couns. 2018 Aug;27(4):885-893. doi: 10.1007/s10897-018-0214-z. Epub 2018 Feb 5.
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