Decruyenaere M, Evers-Kiebooms G, Boogaerts A, Cloostermans T, Cassiman J J, Demyttenaere K, Dom R, Fryns J P, Van den Berghe H
Centre for Human Genetics, University of Leuven, Belgium.
Eur J Hum Genet. 1997 Nov-Dec;5(6):351-63.
Subjective risk perception, perceived impact of Huntington's disease (HD), perceived benefits and barriers of predictive testing and personality characteristics of persons withdrawing from the predictive test programme for HD and of siblings of test applicants were studied in a mailed survey. The belief that important decisions do not need to depend on a test result and the anticipated inability to cope with a bad result played an important role in the decision not to be tested. Nevertheless half of the group who ever considered testing, still planned to undergo a test in the future. A comparison of tested and untested persons revealed that the first group is more likely to overestimate the risk than the second group, but that both groups did not significantly differ from each other regarding anxiety, ego strength and coping strategies. An intrafamilial analysis of tested and untested siblings confirmed these findings. The problems during data collection and the reasons for the dropout are an illustration of the avoidant behaviour regarding HD and the predictive test in many individuals and families.
通过邮寄调查问卷的方式，研究了主观风险认知、亨廷顿舞蹈症（HD）的感知影响、预测性检测的感知益处与障碍，以及退出HD预测性检测项目的人员和检测申请者的兄弟姐妹的性格特征。认为重要决策无需依赖检测结果以及预期无法应对不良结果的信念，在决定不进行检测中起到了重要作用。然而，曾考虑过检测的人群中有一半仍计划在未来进行检测。对已检测和未检测人群的比较显示，第一组比第二组更有可能高估风险，但两组在焦虑、自我力量和应对策略方面并无显著差异。对已检测和未检测的兄弟姐妹进行的家族内分析证实了这些发现。数据收集过程中的问题以及退出的原因，说明了许多个人和家庭对HD及预测性检测的回避行为。
