Tibben A, Timman R, Bannink E C, Duivenvoorden H J
Department of Clinical Genetics, University Hospital Dijkzigt, Rotterdam, The Netherlands.
Health Psychol. 1997 Jan;16(1):20-35. doi: 10.1037//0278-6133.16.1.20.
The 3-year psychological effects of presymptomatic DNA diagnosis for Huntington's disease are described in 20 identified carriers of the Huntington's disease gene (mean age = 31 years), 29 noncarriers (mean age = 32 years), and 37 partners. The Intrusion and Avoidance subscales of the Impact of Event Scale (M. J. Horowitz, N. Wilner, & W. Alvarez, 1979) and the Beck Hopelessness Scale (A. T. Beck, 1986; A. T. Beck, A. Weissman, D. Lester, & L. Trexler, 1974) measured psychological distress at 4 time points: baseline (before disclosure of test results) and 1 week, 6 months, and 3 years after testing. Multivariate testing on course of distress revealed similar patterns of intrusive thoughts about Huntington's disease over the 3-year follow-up in carriers and noncarriers but showed opposite patterns of avoidance at the 6-month assessment. One week after disclosure, carriers had increased and noncarriers had decreased levels of hopelessness. These effects disappeared after 6 months and did not recur. Carrier partners followed the same course of distress as carriers. Carrier partners with children were significantly more distressed than those without offspring. Noncarrier partners were significantly less distressed than noncarriers after 3 years.
本文描述了对20名已确诊的亨廷顿舞蹈症基因携带者（平均年龄 = 31岁）、29名非携带者（平均年龄 = 32岁）以及37名携带者的伴侣进行的为期3年的症状前DNA诊断心理影响研究。采用事件影响量表（M. J. 霍洛维茨、N. 威尔纳和W. 阿尔瓦雷斯，1979年）的侵入和回避分量表以及贝克绝望量表（A. T. 贝克，1986年；A. T. 贝克、A. 魏斯曼、D. 莱斯特和L. 特雷克斯勒，1974年）在4个时间点测量心理困扰：基线（测试结果披露前）以及测试后1周、6个月和3年。对困扰过程的多变量测试显示，在3年的随访中，携带者和非携带者对亨廷顿舞蹈症的侵入性想法模式相似，但在6个月评估时回避模式相反。披露后1周，携带者的绝望感增加，而非携带者的绝望感降低。这些影响在6个月后消失，且未再次出现。携带者的伴侣与携带者经历相同的困扰过程。有孩子的携带者伴侣比没有孩子的伴侣明显更困扰。3年后，非携带者伴侣的困扰程度明显低于非携带者。
