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青少年及其父母在决定是否使用基因组测序结果时的决策冲突。

Decisional conflict among adolescents and parents making decisions about genomic sequencing results.

机构信息

Division of Human Genetics, Cincinnati Children's Hospital Medical Center and University of Cincinnati, Cincinnati, Ohio.

Division of Patient Services, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.

出版信息

Clin Genet. 2020 Feb;97(2):312-320. doi: 10.1111/cge.13658. Epub 2019 Dec 2.

Abstract

Genomic testing of adolescents is increasing yet engaging them in decision-making is not routine. We assessed decisional conflict in adolescents and a parent making independent decisions about actual genomic testing results and factors that influenced their choices. We enrolled 163 dyads consisting of an adolescent (13-17 years) not selected based on a specific clinical indication and one parent. After independently choosing categories of conditions to learn for the adolescent, participants completed the validated Decisional Conflict Scale and a survey assessing factors influencing their respective choices. Adolescents had higher decisional conflict scores than parents (15.6 [IQR:4.7-25.6] vs 9.4 [IQR:1.6-21.9]; P = .0007). Adolescents with clinically significant decisional conflict were less likely to choose to learn all results than adolescents with lower decisional conflict (19.6% vs 80.4%; P < .0001) and less likely to report their choices were influenced by actionability of results (33.3% vs 18.9%; P = .044) and feeling confident they can deal with the results (71.2% vs 91.9%; P = .0005). Our findings suggest higher decisional conflict in adolescents may influence the type and amount of genomic results they wish to learn. Additional research assessing decisional conflict and factors influencing testing choices among adolescents in clinical settings are required.

摘要

对青少年进行基因组检测的情况越来越多,但让他们参与决策并非常规做法。我们评估了青少年及其父母在独立做出关于实际基因组检测结果的决策时的决策冲突,以及影响他们选择的因素。我们招募了 163 对青少年(13-17 岁)及其父母,这些青少年并非基于特定的临床指征进行选择。在独立选择青少年要了解的疾病类别后,参与者完成了经过验证的决策冲突量表和一份评估影响他们各自选择的因素的调查问卷。青少年的决策冲突评分高于父母(15.6 [四分位距:4.7-25.6] 比 9.4 [四分位距:1.6-21.9];P =.0007)。具有临床显著决策冲突的青少年比决策冲突程度较低的青少年更不可能选择了解所有结果(19.6%比 80.4%;P < .0001),也不太可能表示其选择受到结果可操作性(33.3%比 18.9%;P = .044)和对处理结果有信心(71.2%比 91.9%;P = .0005)的影响。我们的研究结果表明,青少年的决策冲突程度较高可能会影响他们希望了解的基因组结果的类型和数量。需要进一步研究在临床环境中评估青少年的决策冲突和影响检测选择的因素。

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Adolescents' and Parents' Genomic Testing Decisions: Associations With Age, Race, and Sex.
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