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西班牙语遗传癌症基因检测网络工具的预试验。

Piloting a Spanish-Language Web-Based Tool for Hereditary Cancer Genetic Testing.

机构信息

College of Public Health, University of South Florida, Tampa, FL 33620, USA.

Department of Human Genetics, University of Miami Miller School of Medicine, Miami, FL 33124, USA.

出版信息

Curr Oncol. 2023 Sep 12;30(9):8352-8362. doi: 10.3390/curroncol30090606.

Abstract

The delivery of hereditary cancer pre-test education among Spanish-language patients is impeded by the dearth of Spanish-speaking genetic counselors. To address this gap, we evaluated a web-based genetic education tool delivered in Spanish to provide information typically discussed during an initial genetic counseling session. Spanish-speaking patients with a personal or family history of cancer were recruited at two centers in Puerto Rico and through social media. A total of 41 participants completed a survey before and after viewing the tool to measure knowledge, attitudes, and decisional empowerment. A subset of 10 participants completed a virtual semi-structured interview to assess the usability and appropriateness of the tool. Paired t-tests were calculated to evaluate changes in knowledge and attitudes. A McNemar test assessed for decisional empowerment. Interview transcripts were translated from Spanish to English and inductively coded and analyzed. Results revealed significant increases in knowledge ( < 0.001), while attitudes about genetic testing did not change ( = 0.77). The proportion of individuals who felt fully informed and empowered to decide about whether to undergo genetic testing increased from 15% to 51% ( < 0.001). Qualitative data indicated that participants found the tool easy to use with informative and valuable content. Our findings suggest this Spanish-language tool is a user-friendly and scalable solution to help inform and empower many individuals to decide about cancer genetic testing, recognizing that others may still benefit from genetic counseling prior to testing.

摘要

西班牙语患者的遗传性癌症检测前教育受到西班牙语遗传咨询师短缺的阻碍。为了解决这一差距,我们评估了一种基于网络的西班牙语遗传教育工具,用于提供通常在初始遗传咨询会议上讨论的信息。在波多黎各的两个中心和社交媒体上招募了有癌症个人或家族史的西班牙语患者。共有 41 名参与者在观看工具前后完成了一项调查,以衡量知识、态度和决策赋权。10 名参与者的一个子集完成了虚拟半结构化访谈,以评估工具的可用性和适宜性。配对 t 检验用于评估知识和态度的变化。McNemar 检验评估决策赋权。采访记录从西班牙语翻译成英语,并进行了归纳编码和分析。结果显示,知识显著增加(<0.001),而遗传检测的态度没有改变(=0.77)。感到充分知情并有能力决定是否进行遗传检测的人数比例从 15%增加到 51%(<0.001)。定性数据表明,参与者认为该工具易于使用,内容丰富且有价值。我们的研究结果表明,这种西班牙语工具是一种用户友好且可扩展的解决方案,可以帮助许多人了解癌症遗传检测并赋予他们决策权力,同时认识到其他人在进行检测前可能仍需要遗传咨询。

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