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“你有患遗传性乳腺癌的风险吗?”:一种遗传性乳腺癌和卵巢癌个人风险评估工具的开发

"Are you at risk for hereditary breast cancer?": development of a personal risk assessment tool for hereditary breast and ovarian cancer.

作者信息

Cohn Wendy F, Jones Susan M, Miesfeldt Susan

机构信息

Department of Public Health Sciences, University of Virginia Health System, Charlottesville, VA, USA.

出版信息

J Genet Couns. 2008 Feb;17(1):64-78. doi: 10.1007/s10897-007-9125-0. Epub 2008 Jan 8.

Abstract

Identification of risk for the hereditary breast and ovarian cancer syndrome (HBOC) is important, as research has demonstrated the benefits of risk-reducing interventions for women with or at risk for this disorder. Knowledge among women regarding risk factors for hereditary breast cancer and the existence of cancer genetics services appears limited. The goal of this project was to develop a tool to broaden women's awareness regarding their potential risk for HBOC. A formal instructional design process was used to develop a brochure to facilitate recognition of HBOC risk among women attending a no-cost breast and cervical cancer screening clinic. Brochure development was guided by gathering feedback from potential users early and often. The resulting brochure included four parts: (1) a brief description of the impact of hereditary breast cancer risk on one's health; (2) a personal and family history collection table; (3) a series of questions enabling the user to self-assess HBOC risk; (4) a list of resources for women at risk for HBOC. User feedback indicated that the brochure was easy to use. The project demonstrated that women can self-evaluate their risk for HBOC. Future work will evaluate this tool among a broader population of women.

摘要

识别遗传性乳腺癌和卵巢癌综合征(HBOC)的风险很重要,因为研究表明,针对患有这种疾病或有患病风险的女性,采取降低风险的干预措施是有益的。女性对遗传性乳腺癌的风险因素以及癌症遗传服务的了解似乎有限。该项目的目标是开发一种工具,以提高女性对自身患HBOC潜在风险的认识。我们采用了正式的教学设计流程来制作一本宣传册,以帮助在免费乳腺癌和宫颈癌筛查诊所就诊的女性认识到HBOC风险。宣传册的制作过程中,我们通过经常尽早地收集潜在用户的反馈来进行指导。最终的宣传册包括四个部分:(1)简要描述遗传性乳腺癌风险对健康的影响;(2)个人和家族病史收集表;(3)一系列问题,使用户能够自我评估HBOC风险;(4)针对有HBOC风险女性的资源列表。用户反馈表明该宣传册易于使用。该项目表明女性可以自我评估患HBOC的风险。未来的工作将在更广泛的女性群体中评估这个工具。

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