Giuse Nunzia Bettinsoli, Kusnoor Sheila V, Koonce Taneya Y, Naylor Helen M, Chen Sheau-Chiann, Blasingame Mallory N, Anderson Ingrid A, Micheel Christine M, Levy Mia A, Ye Fei, Lovly Christine M
a Knowledge Management , Vanderbilt University Medical Center , Nashville , Tennessee , USA.
b Department of Biomedical Informatics , Vanderbilt University Medical Center , Nashville , Tennessee , USA.
J Health Commun. 2016;21 Suppl 1(Suppl):5-17. doi: 10.1080/10810730.2015.1131772.
As the role of genomics in health care grows, patients increasingly require adequate genetic literacy to fully engage in their care. This study investigated a model for delivering consumer-friendly genetic information to improve understanding of precision medicine using health literacy and learning style principles. My Cancer Genome (MCG), a freely available cancer decision support tool, was used as a testbed. MCG content on a melanoma tumor mutation, BRAF V600E, was translated to a 6th-grade reading level, incorporating multiple learning modalities. A total of 90 patients and caregivers were recruited from a melanoma clinic at an academic medical center and randomized to 3 groups. Group A (control) received an exact copy of text from MCG. Group B was given the same content with hyperlinks to videos explaining key genetic concepts, identified and labeled by the team as knowledge pearls. Group C received the translated content with the knowledge pearls embedded. Changes in knowledge were measured through pre and post questionnaires. Group C showed the greatest improvement in knowledge. The study results demonstrate that providing information based on health literacy and learning style principles can improve patients' understanding of genetic concepts, thus increasing their likelihood of taking an active role in any decision making concerning their health.
随着基因组学在医疗保健中的作用不断增强，患者越来越需要具备足够的基因知识素养，以便充分参与自身的医疗护理。本研究调查了一种提供面向消费者的基因信息的模式，以利用健康素养和学习风格原则提高对精准医疗的理解。“我的癌症基因组”（MCG），一个免费的癌症决策支持工具，被用作测试平台。关于黑色素瘤肿瘤突变BRAF V600E的MCG内容被翻译成六年级阅读水平，并融入了多种学习方式。总共从一家学术医疗中心的黑色素瘤诊所招募了90名患者和护理人员，并随机分为3组。A组（对照组）收到MCG文本的精确副本。B组收到相同内容，并带有指向解释关键基因概念的视频的超链接，这些视频由团队识别并标记为知识要点。C组收到嵌入了知识要点的翻译内容。通过前后问卷测量知识的变化。C组在知识方面显示出最大的进步。研究结果表明，基于健康素养和学习风格原则提供信息可以提高患者对基因概念的理解，从而增加他们在任何有关自身健康的决策中发挥积极作用的可能性。
