The role of disease perceptions and results sharing in psychological adaptation after genetic susceptibility testing: the REVEAL Study.

The role of disease perceptions and results sharing in psychological adaptation after genetic susceptibility testing: the REVEAL Study.
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DOI:
10.1038/ejhg.2010.119
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发表时间:
2010-12
影响因子:
5.2
通讯作者:
Green, Robert C.
Green, Robert C.
中科院分区:
生物学2区
文献类型:
--
作者:
Ashida, Sato;Koehly, Laura M.;Roberts, J. Scott;Chen, Clara A.;Hiraki, Susan;Green, Robert C.

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这项研究评估了遗传易感性测试后心理适应(抑郁症状,焦虑和测试特定痛苦的有效措施)受到阿尔茨海默病(AD)信念变化和与他人分享测试结果的影响程度。AD患者的成年儿童(N=269)来自一项随机临床试验,涉及载脂蛋白E(APOE)的基因检测,提供了信息之前,以及6周和12个月后的结果披露。在12个月的评估中,参与者的适应水平差异很大。与那些知道自己是ε4阳性的人相比,那些知道自己是ε4阴性(风险较低)的参与者在感知风险和对发展AD的担忧方面有所减少。那些通过扩展教育方案(三次亲自访问)获得结果的人比那些在浓缩方案(教育手册和两次亲自访问)中的AD关注下降更大。在6周后AD关注的增加与抑郁评分(B=0.20,P<0.01)和焦虑水平(B=0.20,P<0.01)的增加相关,并且在测试1年后与AD基因测试相关的更高的痛苦(B=0.18,P=0.02)。感知风险的增加(B=0.16,P=0.04)也与较高的AD基因检测痛苦相关。与健康专家和朋友(但不是家人)分享测试结果与一年后抑郁(B=-0.11,P=0.05)和焦虑水平(B=-0.16,P<0.01)的下降有关。在测前咨询中加强对AD风险和担忧的讨论,并在测后通过分享结果获得支持,可能有助于促进受试者的长期心理适应。
This study evaluates the extent to which psychological adaptation (validated measures of depressive symptoms, anxiety, and test-specific distress) after genetic susceptibility testing is influenced by changes in beliefs about Alzheimer's disease (AD) and sharing of test results with others. Adult children of AD patients (N=269) from a randomized clinical trial involving genetic testing for apolipoprotein E (APOE) provided information before, as well as 6 weeks and 12 months after results disclosure. The levels of adaptation varied highly among participants at 12-month assessment. Participants who learned that they were ε4 negative (lower risk) had a reduction in perceived risk and concern about developing AD compared with those who learned that they were ε4 positive. Those who received results through an extended educational protocol (three in-person visits) had a larger decline in AD concern than those in a condensed protocol (educational brochure and two in-person visits). Increase in AD concern 6 weeks after disclosure was associated with increase in depression scores (b=0.20, P<0.01) and anxiety levels (b=0.20, P<0.01), and higher distress associated with AD genetic testing (b=0.18, P=0.02) 1 year after testing. Increase in perceived risk (b=0.16, P=0.04) was also associated with higher AD genetic testing distress. Sharing the test results with health professionals and friends (but not family) was associated with decrease in depression (b= −0.11, P=0.05) and anxiety levels (b= −0.16, P<0.01), respectively after a year. Enhancing discussion with regard to risks and concerns about AD during pretesting counseling and obtaining support through sharing the results after testing may help facilitate test recipients' long-term psychological adaptation.
DOI: 10.1002/ajmg.10110
发表时间: 2002-01-15
期刊: AMERICAN JOURNAL OF MEDICAL GENETICS
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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: --
作者:
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DOI: 10.1377/hlthaff.20.5.252
发表时间: 2001-09-01
期刊: HEALTH AFFAIRS
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