"I know what you told me, but this is what I think:" perceived risk of Alzheimer disease among individuals who accurately recall their genetics-based risk estimate.

"I know what you told me, but this is what I think:" perceived risk of Alzheimer disease among individuals who accurately recall their genetics-based risk estimate.
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DOI:
10.1097/gim.0b013e3181cef9e1
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发表时间:
2010-04
期刊:
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子:
--
通讯作者:
Green RC
Green RC
中科院分区:
其他
文献类型:
--
作者:
Linnenbringer E;Roberts JS;Hiraki S;Cupples LA;Green RC

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这项研究评估了准确回忆起基于遗传学的阿尔茨海默病风险评估的个人的阿尔茨海默病风险认知。246名阿尔茨海默病患者未受影响的一级亲属参加了一项多点随机对照试验,以检验传递载脂蛋白E基因和终生阿尔茨海默病风险信息的效果。在158名在风险披露6周后准确回忆起他们的阿尔茨海默病风险评估的参与者中,75人(47.5%)认为他们的阿尔茨海默病风险与他们得到的阿尔茨海默病风险估计值相差超过5%。在这一亚组中,69.3%的人认为他们患阿尔茨海默病的风险比他们被告知的高(不和谐的高),而30.7%的人认为他们的阿尔茨海默病的风险较低(不和谐的低)。基线风险认知较高的参与者更有可能有不和谐-高风险认知(P<0.05)。不和谐-低水平组的参与者更有可能是APOEε4阳性(P<0.05),并且在阿尔茨海默病可控制性量表上的得分更高(P<0.05)。我们的结果表明,即使在准确回忆起他们的阿尔茨海默病风险评估的个人中,许多人也不会以面值来进行沟通的风险评估。进一步探讨这种临床相关的风险信息反应是有必要的。
This study evaluates the Alzheimer disease risk perceptions of individuals who accurately recall their genetics-based Alzheimer disease risk assessment. Two hundred forty-six unaffected first-degree relatives of patients with Alzheimer disease were enrolled in a multisite randomized controlled trial examining the effects of communicating APOE genotype and lifetime Alzheimer disease risk information. Among the 158 participants who accurately recalled their Alzheimer disease risk assessment 6 weeks after risk disclosure, 75 (47.5%) believed their Alzheimer disease risk was more than 5% points different from the Alzheimer disease risk estimate they were given. Within this subgroup, 69.3% believed that their Alzheimer disease risk was higher than what they were told (discordant high), whereas 30.7% believed that their Alzheimer disease risk was lower (discordant low). Participants with a higher baseline risk perception were more likely to have a discordant-high risk perception (P < 0.05). Participants in the discordant-low group were more likely to be APOE ε4 positive (P < 0.05) and to score higher on an Alzheimer disease controllability scale (P < 0.05). Our results indicate that even among individuals who accurately recall their Alzheimer disease risk assessment, many people do not take communicated risk estimates at face value. Further exploration of this clinically relevant response to risk information is warranted.