There is a lack of qualitative research investigating the experience of individuals at risk for Huntington's disease (HD) during the period prior to undergoing predictive testing, as well as their reaction to the test result. This secondary analysis study aimed to explore the experiences during the predictive testing process of individuals who had been or who were at risk for HD. For the primary study, in‐depth semi‐structured interviews were conducted, and data were analyzed using inductive thematic analysis. We employed the explorative qualitative design for this study, which involved 33 individuals who had been or who were at risk for HD. Results indicate that many had been anticipating the onset of the disease even before they knew their mutation status. Their choice of whether to get tested or not was influenced by personal, social, and practical factors. Whether the test result was positive or negative, coping with the test result was reported to be difficult. Participants with a mutation‐negative result felt a need for more follow‐up consultations than what they had received. Findings indicate that the decision to undergo predictive testing for HD was not only a personal choice, but was also influenced by both proximal and distant factors. Similar to individuals who tested positive for the mutation, individuals who tested negative for the mutation may need comprehensive follow‐up to adapt to the reality of the test result.

中文翻译：

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对亨廷顿氏病进行预测性基因检测的心理反应：定性研究

缺乏定性研究来调查处于亨廷顿氏病（HD）风险中的个体在进行预测性测试之前的经历以及他们对测试结果的反应。这项二级分析研究旨在探讨曾经或即将患HD的个体在预测性测试过程中的经验。对于初次研究，进行了深入的半结构化访谈，并使用归纳主题分析法对数据进行了分析。我们在这项研究中采用了探索性的定性设计，涉及33名曾经或有HD风险的个体。结果表明，许多人甚至在知道其突变状态之前就已经在预期这种疾病的发作。他们是否接受测试的选择受个人，社交，和实际因素。不论测试结果是阳性还是阴性，都很难对付测试结果。结果突变为阴性的参与者感到需要进行比其收到的更多的后续咨询。研究结果表明，进行HD预测性测试的决定不仅是个人选择，而且还受到近端和远端因素的影响。与对突变测试呈阳性的个体相似，对突变测试呈阴性的个体可能需要全面的随访，以适应测试结果的实际情况。研究结果表明，进行HD预测性测试的决定不仅是个人选择，而且还受到近端和远端因素的影响。与对突变测试呈阳性的个体相似，对突变测试呈阴性的个体可能需要全面的随访，以适应测试结果的实际情况。研究结果表明，进行HD预测性测试的决定不仅是个人选择，而且还受到近端和远端因素的影响。与对突变测试呈阳性的个体相似，对突变测试呈阴性的个体可能需要全面的随访，以适应测试结果的实际情况。