外显子组测序后患者教育视频对遗传咨询结果的影响。
Impact of patient education videos on genetic counseling outcomes after exome sequencing.
机构信息
Sarah Lawrence College, Joan H. Marks Graduate Program in Human Genetics, Bronxville, NY, USA; Division of Clinical Genetics, Department of Pediatrics, Columbia University Irving Medical Center, New York, NY, USA.
Sarah Lawrence College, Joan H. Marks Graduate Program in Human Genetics, Bronxville, NY, USA; GeneDx, 207 Perry Parkway, Gaithersburg, MD, USA.
出版信息
Patient Educ Couns. 2020 Jan;103(1):127-135. doi: 10.1016/j.pec.2019.08.018. Epub 2019 Aug 24.
OBJECTIVE
Growing use of clinical exome sequencing (CES) has led to an increased burden of genomic education. Self-guided educational tools can minimize the educational burden for genetic counselors (GCs). The effectiveness of these tools must be evaluated.
METHODS
Parents of patients offered CES were randomized to watch educational videos before their visit or to receive routine care. Parents and GCs were surveyed about their experiences following the sessions. The responses of the video (n = 102) and no-video (n = 105) groups were compared.
RESULTS
GCs reported no significant differences between parents in the video and no-video groups on genetics knowledge or CES knowledge. In contrast, parents' scores on genetics knowledge questions were lower in the video than no-video group (p = 0.007). Most parents reported the videos were informative, and the groups did not differ in satisfaction with GCs or decisions to have CES.
CONCLUSION
GCs and parents perceived the videos to be beneficial. However, lower scores on genetics knowledge questions highlight the need for careful development of educational tools.
PRACTICE IMPLICATIONS
Educational tools should be developed and assessed for effectiveness with the input of all stakeholders before widespread implementation. Better measures of the effectiveness of these educational tools are needed.
目的
临床外显子组测序（CES）的应用日益增多，导致基因组教育负担加重。自我指导的教育工具可以最大限度地减少遗传咨询师（GCs）的教育负担。必须评估这些工具的有效性。
方法
为接受 CES 的患者的家长提供随机观看教育视频或接受常规护理。在会议结束后，对家长和 GCs 进行调查，了解他们的体验。比较了视频组（n=102）和无视频组（n=105）的反应。
结果
GCs 报告说，在视频组和无视频组的父母中，在遗传知识或 CES 知识方面没有显著差异。相比之下，在视频组中，家长的遗传知识问题得分低于无视频组（p=0.007）。大多数家长表示视频内容丰富，GCs 和家长对视频的满意度以及进行 CES 的决定没有差异。
结论
GCs 和家长认为这些视频是有益的。然而，遗传知识问题得分较低突出表明需要仔细开发教育工具。
实践意义
在广泛实施之前，应在所有利益相关者的参与下开发和评估教育工具的有效性，并对其进行评估。需要更好的衡量这些教育工具的有效性的措施。
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