接受选择性基因组测试作为临床服务的患者的态度,知识和风险感知
Emilie S Zoltick1, Megan Bell2, Madison R Hickingbotham1
1Department of Population Medicine, Harvard Pilgrim Health Care Institute, Boston, MA.
概括
患者寻求选择性基因组测试 (EGT) 来了解疾病风险,但往往误解其预测能力. 现实数据揭示了EGT受益者的动机和知识差距.
科学领域:
- 基因组医学是基因组医学.
- 临床遗传学 临床遗传学
- 患者教育 患者教育
背景情况:
- 选择性基因组测试 (EGT) 在临床环境中越来越容易获得.
- 需要关于患者对EGT的理解和观点的现实数据.
研究的目的:
- 为了评估患者的态度,知识和风险感知,在基于网络的EGT教育之后.
- 了解患者在临床环境中接受EGT的动机.
主要方法:
- 在接受基于网络的教育后,对参加EGT计划的患者进行了调查.
- 该调查评估了患者的态度,知识和对疾病风险的看法.
- 在2020年8月至2022年4月期间,从5920名患者收集了数据.
主要成果:
- EGT的主要动机是学习个人疾病风险,期望指导药物治疗,预防疾病,并告知后代风险.
- 患者对遗传信息隐私和测试预测准确性表示严重担忧.
- 平均而言,患者正确回答了61.3%的知识问题,这表明对EGT能力的误解很常见.
结论:
- 患者根据感知到的实用性来追求EGT,特别是在疾病风险评估和管理方面.
- 患者的期望和EGT的实际能力之间存在很大的差距,强调需要改善患者教育.
- 现实世界的证据表明,虽然受潜在益处的激励,但患者可能缺乏对基因组测试局限性的全面理解.
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