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个体罹患黑色素瘤的基因风险信息所带来的困扰、不确定性和积极体验。

Distress, uncertainty, and positive experiences associated with receiving information on personal genomic risk of melanoma.

机构信息

Cancer Epidemiology and Prevention Research, Sydney School of Public Health, The University of Sydney, Sydney, Australia.

Sydney Health Ethics, Sydney School of Public Health, The University of Sydney, Sydney, Australia.

出版信息

Eur J Hum Genet. 2018 Aug;26(8):1094-1100. doi: 10.1038/s41431-018-0145-z. Epub 2018 Apr 30.

Abstract

The aim of this research was to understand how genomics-based personal melanoma risk information impacts psychological and emotional health outcomes in the general population. In a pilot randomized controlled trial, participants (n = 103) completed the Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire, 3 months after receiving personal melanoma genomic risk information. Mean scores for MICRA items and subscales were stratified by genomic risk group (low, average, high), gender, education, age, and family history of melanoma. P values were obtained from t-tests and analysis of variance tests. We found that overall, participants (mean age: 53 years, range: 21-69; 52% female) had a total MICRA mean score of 18.6 (standard deviation: 11.1, range: 1-70; possible range: 0-105). The high genomic risk group had higher mean scores for the total (24.2, F = 6.7, P = 0.0019), distress (3.3, F = 9.4, P = 0.0002) and uncertainty (8.5, F = 6.5, P = 0.0021) subscales compared with average (17.6, 1.1, and 4.5, respectively) and low-risk groups (14.1, 0.5, and 2.5, respectively). Positive experiences scores were consistent across risk groups. In conclusion, MICRA scores for the total, distress and uncertainty subscales in our study were relatively low overall, but people who receive a high genomic risk result may benefit from increased support following testing.

摘要

本研究旨在了解基于基因组的个人黑色素瘤风险信息如何影响普通人群的心理和情绪健康结果。在一项试点随机对照试验中,参与者(n=103)在接受个人黑色素瘤基因组风险信息 3 个月后完成了多维癌症风险评估量表(MICRA)问卷。根据基因组风险组(低、中、高)、性别、教育程度、年龄和黑色素瘤家族史对 MICRA 项目和子量表的平均得分进行分层。从 t 检验和方差分析检验中获得 P 值。我们发现,总体而言,参与者(平均年龄:53 岁,范围:21-69;52%为女性)的 MICRA 总得分平均为 18.6(标准差:11.1,范围:1-70;可能范围:0-105)。高基因组风险组的总得分(24.2,F=6.7,P=0.0019)、困扰(3.3,F=9.4,P=0.0002)和不确定性(8.5,F=6.5,P=0.0021)子量表的平均得分高于中风险组(分别为 17.6、1.1 和 4.5)和低风险组(分别为 14.1、0.5 和 2.5)。积极体验得分在各风险组中一致。总之,我们研究中的 MICRA 总分、困扰和不确定性子量表的得分总体上相对较低,但接受高基因组风险结果的人可能会受益于测试后的更多支持。

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