Development and Validation of a Genomic Knowledge Scale to Advance Informed Decision Making Research in Genomic Sequencing.

Development and Validation of a Genomic Knowledge Scale to Advance Informed Decision Making Research in Genomic Sequencing.
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DOI:
10.1177/2381468317692582
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发表时间:
2017-01
影响因子:
--
通讯作者:
Rini C
Rini C
中科院分区:
其他
文献类型:
--
作者:
Langer MM;Roche MI;Brewer NT;Berg JS;Khan CM;Leos C;Moore E;Brown M;Rini C

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背景资料:本研究评估了一种新的,全面的衡量基因组测序知识的心理测量特性,北卡罗来纳州大学基因组知识量表(UNC-GKS)。方法:UNC-GKS评估了四个领域的知识,这些领域被认为对基因组测序的知情决策至关重要。该量表使用经典测试理论和项目反应理论在NCGENES研究中接受诊断性全外显子组测序(WES)的286名成人患者和132名儿科患者的父母中进行验证。结果:UNC-GKS评估了具有良好内部可靠性(Cronbach α = 0.90)的单一基础结构(基因组知识)。分数是最具信息性的(能够区分具有不同基因组知识水平的个体),在一个标准差以上的规模平均值或更低,一个范围,包括大多数参与者。收敛效度与健康素养和算术(rs = 0.41-0.46)协会的支持。该量表在性别、种族/民族、教育和英语水平不同的亚组中运行良好。讨论内容:研究结果支持UNC-GKS的承诺,作为一个有效和可靠的措施,基因组知识的人面临着复杂的决定有关WES和可比的测序方法。它既不是疾病特异性的,也不是人群特异性的,它在重要的亚群中发挥了良好的作用,使其在不同的人群中可用。
Background: This study evaluated the psychometric properties of a new, comprehensive measure of knowledge about genomic sequencing, the University of North Carolina Genomic Knowledge Scale (UNC-GKS). Methods: The UNC-GKS assesses knowledge in four domains thought to be critical for informed decision making about genomic sequencing. The scale was validated using classical test theory and item response theory in 286 adult patients and 132 parents of pediatric patients undergoing diagnostic whole exome sequencing (WES) in the NCGENES study. Results: The UNC-GKS assessed a single underlying construct (genomic knowledge) with good internal reliability (Cronbach’s α = 0.90). Scores were most informative (able to discriminate between individuals with different levels of genomic knowledge) at one standard deviation above the scale mean or lower, a range that included most participants. Convergent validity was supported by associations with health literacy and numeracy (rs = 0.41–0.46). The scale functioned well across subgroups differing in sex, race/ethnicity, education, and English proficiency. Discussion: Findings supported the promise of the UNC-GKS as a valid and reliable measure of genomic knowledge among people facing complex decisions about WES and comparable sequencing methods. It is neither disease- nor population-specific, and it functioned well across important subgroups, making it usable in diverse populations.