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一种便于理解、注重关系、包容并具有可操作性(ARIA)的遗传咨询模式与常规护理的比较:一项随机对照试验的结果。

An accessible, relational, inclusive, and actionable (ARIA) model of genetic counseling compared with usual care: Results of a randomized controlled trial.

机构信息

Department of Humanities & Social Sciences, University of California San Francisco, San Francisco, CA; Helen Diller Family Comprehensive Cancer Center, University of California, San Francisco, CA.

Kaiser Permanente Center for Health Research, Portland, OR.

出版信息

Genet Med. 2022 Nov;24(11):2228-2239. doi: 10.1016/j.gim.2022.07.025. Epub 2022 Sep 2.

DOI:10.1016/j.gim.2022.07.025
PMID:36053287
Abstract

PURPOSE

Effective approaches to communicate genomic information are needed to ensure equitable care. In a randomized controlled superiority trial, we tested a novel practice model that aims to make genetic counseling inclusive, by making the communication accessible, relational, and actionable (ARIA).

METHODS

In total, 696 English- and Spanish-speaking patients aged 18 to 49 years, enriched for individuals from historically underserved backgrounds, were randomized in 1:1 ratio to ARIA or usual care. Primary outcomes were accuracy of recall, communication satisfaction, and perceived understanding. In total, 33 participants completed qualitative interviews.

RESULTS

Recall and understanding were high for all participants. ARIA participants scored higher on the relationship scale of communication satisfaction (mean difference = 0.09, 95% CI = <0.01 to 0.17). Moderator analyses of communication satisfaction showed that those with lower health literacy reported less communication difficulty in ARIA and those using medical interpreters reported greater communication ease in ARIA. No significant difference was found on other primary and secondary outcomes. Qualitative data enhanced understanding of how and why ARIA can be effective.

CONCLUSION

This study provides evidence that a genetic counseling intervention that focuses on specific communication skills to enhance relationship-building, patient engagement, and comprehension can be effective with all patients and may be especially valuable for patients of lower health literacy and Spanish-speakers who use a medical interpreter.

摘要

目的

需要有效的方法来沟通基因组信息,以确保公平的护理。在一项随机对照优势试验中,我们测试了一种新的实践模式,旨在通过使沟通具有可及性、关系性和可操作性(ARIA),使遗传咨询具有包容性。

方法

共有 696 名年龄在 18 至 49 岁的英语和西班牙语患者,他们来自历史上服务不足的背景,按照 1:1 的比例随机分配到 ARIA 组或常规护理组。主要结局是回忆的准确性、沟通满意度和感知理解。共有 33 名参与者完成了定性访谈。

结果

所有参与者的回忆和理解都很高。ARIA 组在沟通满意度的关系量表上得分更高(平均差异=0.09,95%置信区间:<0.01 至 0.17)。沟通满意度的调节分析表明,那些健康素养较低的人在 ARIA 中报告的沟通困难较少,而那些使用医疗口译员的人在 ARIA 中报告的沟通更容易。其他主要和次要结局没有发现显著差异。定性数据增强了对 ARIA 如何以及为何有效的理解。

结论

这项研究提供了证据表明,一种专注于特定沟通技巧的遗传咨询干预措施,可以增强建立关系、患者参与和理解能力,对所有患者都有效,对于健康素养较低的患者和使用医疗口译员的西班牙语患者尤其有价值。

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