The Genetic Education for Men (GEM) Trial: Development of Web-Based Education for Untested Men in BRCA1/2-Positive Families.
The Genetic Education for Men (GEM) Trial: Development of Web-Based Education for Untested Men in BRCA1/2-Positive Families.
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男性基因教育 (GEM) 试验：为 BRCA1/2 阳性家庭中未经测试的男性开发基于网络的教育。
DOI：
10.1007/s13187-019-01599-y
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发表时间：
2021
期刊：
影响因子：
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通讯作者：
Schwartz,MarcD
中科院分区：
文献类型：
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作者：
Peshkin,BethN;Ladd,MaryKate;Isaacs,Claudine;Segal,Hannah;Jacobs,Aryana;Taylor,KathrynL;Graves,KristiD;O'Neill,SuzanneC;Schwartz,MarcD
遗传性乳腺癌/卵巢癌的级联检测是一项重要的公共卫生重点。越来越多的人关注brca1 /2阳性家族中男性检测的相关性，因为这种检测可能提供有关其癌症风险（特别是前列腺癌）及其后代风险的重要信息。然而，男性不太可能寻求遗传咨询和测试比他们有风险的女性亲属。为了方便获取测试前信息和测试，我们为男性开发了一种基于网络的干预（WI），我们正在一项试点随机对照试验（RCT）中对其进行评估。本文描述了WI发展的三个研究阶段：(1)brca1 /2家庭男性的形成性（定性）研究，以评估教育需求和偏好；(2) WI的组织、格式和内容的详细说明；③可用性测试。我们讨论了试点RCT的目的和假设，其中WI正在与高危男性的常规护理条件进行比较。我们期望这里描述的WI将促进明智的决定，并导致brca1 /2咨询和测试的使用增加，潜在地为这一研究不足的群体及其高危亲属带来更好的癌症控制结果。
Cascade testing for hereditary breast/ovarian cancer is an important public health priority. Increasing attention has been paid to the relevance of testing for men withinBRCA1/2-positive families given that such testing may provide important information about their cancer risks, particularly for prostate cancer, and risks to their offspring. However, men are much less likely to seek genetic counseling and testing than their at-risk female relatives. To facilitate access to pre-test information and testing, we developed a web-based intervention (WI) for men that we are evaluating in a pilot randomized controlled trial (RCT). This paper describes three phases of research in the development of the WI: (1) formative (qualitative) research among men fromBRCA1/2families to assess needs and preferences for education; (2) a detailed description of the organization, format, and content of the WI; and (3) usability testing. We discuss the aims and hypotheses of the pilot RCT in which the WI is being compared with an enhanced usual care condition among at-risk men. We expect that the WI described here will foster informed decisions and lead to increased use ofBRCA1/2counseling and testing, potentially yielding improved cancer control outcomes for this understudied group, and for their at-risk relatives.