The psychological consequences of predictive testing for Huntington's disease. Canadian Collaborative Study of Predictive Testing.
The psychological consequences of predictive testing for Huntington's disease. Canadian Collaborative Study of Predictive Testing.
复制标题
亨廷顿病预测测试的心理后果。
DOI：
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发表时间：
1993
影响因子：
158.5
通讯作者：
M. Hayden
中科院分区：
文献类型：
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作者：
S. Wiggins;Path Whyte;M. Huggins;S. Adam;J. Theilmann;M. Bloch;S. Sheps;M. Schechter;M. Hayden
背景
分子遗传学的进步导致了可以预测几种成人发病疾病基因遗传风险的测试的发展。然而，这种测试的心理后果并不清楚。
方法
加拿大基因检测项目的135名参与者预测了亨廷顿病的风险，根据他们的测试结果，他们被分为三组：风险增加组（37名参与者），风险降低组（58名参与者）和风险没有变化的组（无变化组）（40名参与者）。所有参与者在测试前后都接受了咨询。在基因检测之前，对心理困扰（症状检查表90-R的一般严重程度指数），抑郁（贝克抑郁量表）和幸福感（一般幸福感量表）进行了标准测量，并在参与者收到测试结果后的7至10天，6个月和12个月内再次进行测量。
结果
在每次随访评估中，风险降低组的痛苦评分低于测试前（P < 0.001）。风险增加组在任何随访指标上与基线相比均无显著变化，但在研究的一年中，痛苦和抑郁有小幅线性下降（P < 0.023）。每次随访时，无变化组的总体幸福指数评分均低于基线（P <或= 0.045）。在12个月的随访中，风险增加组和风险降低组的抑郁评分均低于无变化组，幸福感评分高于无变化组（P <或= 0.049）。
结论
对亨廷顿病的预测性检测对那些接受结果表明遗传该疾病基因的风险增加或减少的人的心理健康具有潜在的益处。
BACKGROUND
Advances in molecular genetics have led to the development of tests that can predict the risk of inheriting the genes for several adult-onset diseases. However, the psychological consequences of such testing are not well understood.
METHODS
The 135 participants in the Canadian program of genetic testing to predict the risk of Huntington's disease were followed prospectively in three groups according to their test results: the increased-risk group (37 participants), the decreased-risk group (58 participants), and the group with no change in risk (the no-change group) (40 participants). All the participants received counseling before and after testing. Standard measures of psychological distress (the General Severity Index of the Symptom Check List 90-R), depression (the Beck Depression Inventory), and well-being (the General Well-Being Scale) were administered before genetic testing and again at intervals of 7 to 10 days, 6 months, and 12 months after the participants received their test results.
RESULTS
At each follow-up assessment, the decreased-risk group had lower scores for distress than before testing (P < 0.001). The increased-risk group showed no significant change from base line on any follow-up measure, but over the year of study there were small linear declines (P < 0.023) for distress and depression. The no-change group had scores lower than at base line on the index of general well-being at each follow-up (P < or = 0.045). At the 12-month follow-up, both the increased-risk group and the decreased-risk group had lower scores for depression and higher scores for well-being than the no-change group (P < or = 0.049).
CONCLUSIONS
Predictive testing for Huntington's disease has potential benefits for the psychological health of persons who receive results that indicate either an increase or a decrease in the risk of inheriting the gene for the disease.