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糖尿病风险基因检测后的信息寻求与分享行为。

Information-seeking and sharing behavior following genomic testing for diabetes risk.

作者信息

Mills Rachel, Powell Jill, Barry William, Haga Susanne B

机构信息

Duke Institute for Genome Sciences & Policy, Duke University, 304 Research Drive, Box 90141, Durham, NC, 27708, USA,

出版信息

J Genet Couns. 2015 Feb;24(1):58-66. doi: 10.1007/s10897-014-9736-1. Epub 2014 Jun 14.

Abstract

As the practice of medicine has become more patient-driven, patients are increasingly seeking health information within and outside of their doctor's office. Patients looking for information and support are often turning to the Internet as well as family and friends. As part of a study to understand the impact of delivery method of genomic testing for type 2 diabetes risk on comprehension and health-related behaviors, we assessed participants' information-seeking and sharing behaviors after receiving their results in-person with a genetic counselor or online through the testing company's website. We found that 32.6 % of participants sought information after receiving the genomic test results for T2DM; 80.8 % of those that did seek information turned to the Internet. Eighty-eight percent of participants reported that they shared their T2DM risk results, primarily with their spouse/partner (65 %) and other family members (57 %) and children (19 %); 14 % reported sharing results with their health provider. Sharing was significantly increased in those who received results in-person from the genetic counselor (p = 0.0001). Understanding patients' interests and needs for additional information after genomic testing and with whom they share details of their health is important as more information and clinical services are available and accessed outside the clinician's office. Genetic counselors' expertise and experience in creating educational materials and promoting sharing of genetic information can facilitate patient engagement and education.

摘要

随着医疗实践越来越以患者为导向,患者在医生办公室内外越来越多地寻求健康信息。寻求信息和支持的患者通常会求助于互联网以及家人和朋友。作为一项了解2型糖尿病风险基因检测的交付方式对理解和健康相关行为影响的研究的一部分,我们评估了参与者在与遗传咨询师当面或通过检测公司网站在线收到检测结果后的信息寻求和分享行为。我们发现,32.6%的参与者在收到2型糖尿病基因检测结果后寻求信息;在那些确实寻求信息的人中,80.8%转向了互联网。88%的参与者报告说他们分享了自己的2型糖尿病风险结果,主要是与配偶/伴侣(65%)、其他家庭成员(57%)和孩子(19%);14%报告与他们的医疗服务提供者分享结果。从遗传咨询师那里当面收到结果的人分享行为显著增加(p = 0.0001)。随着更多信息和临床服务在临床医生办公室之外可用并被获取,了解患者在基因检测后对额外信息的兴趣和需求以及他们与谁分享健康细节非常重要。遗传咨询师在创建教育材料和促进基因信息分享方面的专业知识和经验可以促进患者参与和教育。

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