Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.
Genet Med. 2021 Jun;23(6):1086-1094. doi: 10.1038/s41436-021-01112-1. Epub 2021 Mar 2.
Alternative models of genetic counseling are needed to meet the rising demand for genomic sequencing. Digital tools have been proposed as a method to augment traditional counseling and reduce burden on professionals; however, their role in delivery of genetic counseling is not established. This study explored the role of the Genomics ADvISER, a digital decision aid, in delivery of genomic counseling.
We performed secondary analysis of 52 pretest genetic counseling sessions that were conducted over the course of a randomized controlled trial evaluating the effectiveness of the Genomics ADvISER. As part of the trial, participants were randomized to receive standard counseling or use the tool and then speak with a counselor. A qualitative interpretive description approach using thematic analysis and constant comparison was used for analysis.
In the delivery of genomic counseling, the Genomics ADvISER contributed to enhancing counseling by (1) promoting informed dialogue, (2) facilitating preference-sensitive deliberation, and (3) deepening personalization of decisions, all of which represent fundamental principles of patient-centered care: providing clear high-quality information, respecting patients' values, preferences, and expressed needs, and providing emotional support.
This study demonstrates that our digital tool contributed to enhancing patient-centered care in the delivery of genomic counseling.
需要替代遗传咨询模式来满足日益增长的基因组测序需求。数字工具已被提议作为一种增强传统咨询和减轻专业人员负担的方法;然而,它们在遗传咨询中的作用尚未确定。本研究探讨了基因组顾问(Genomics ADviser)这一数字决策辅助工具在基因组咨询中的作用。
我们对在一项评估基因组顾问有效性的随机对照试验中进行的 52 次预测试遗传咨询会话进行了二次分析。作为试验的一部分,参与者被随机分配接受标准咨询或使用该工具,然后与顾问交谈。使用主题分析和不断比较的定性解释性描述方法进行分析。
在提供基因组咨询方面,基因组顾问通过以下方式有助于增强咨询:(1)促进知情对话,(2)促进偏好敏感的审议,以及(3)深化决策的个性化,这些都代表了以患者为中心的护理的基本原则:提供清晰的高质量信息,尊重患者的价值观、偏好和表达的需求,并提供情感支持。
本研究表明,我们的数字工具有助于在基因组咨询中增强以患者为中心的护理。