Lawson K, Wiggins S, Green T, Adam S, Bloch M, Hayden M R
Department of Medical Genetics, University of British Columbia, Vancouver, Canada.
J Med Genet. 1996 Oct;33(10):856-62. doi: 10.1136/jmg.33.10.856.
A total of 135 participants in the Canadian predictive testing programme for HD were followed for at least one year in one of four study groups: increased risk (n = 37), decreased risk ( n = 58), uninformative (n = 17), or not tested (n = 23). Clinical criteria for an adverse event were a suicide attempt or formulation of a suicide attempt plan, psychiatric hospitalisation, depression lasting longer than two months, a marked increase in substance abuse, and the breakdown of important relationships. Quantitative criteria, as measured by changes on the General Severity Index of the Symptom Checklist 90-R and the Beck Depression Inventory, were also used to identify people who had adverse events. Twenty of the 135 participants (14.8%) had an adverse event. There were no significant differences between those with or without an adverse event with respect to age, sex, marital status, education, psychiatric history, general psychiatric distress, or social supports at baseline. However, evidence for depression was associated with an increased frequency of adverse events (p < 0.04). The adverse events were similar and seen with equivalent frequency in those receiving an increased risk or decreased risk and persons at risk who did not receive a modification of risk. However, a significant difference was found in the timing of adverse events for the increased and decreased risk groups (p < 0.0002). In the increased risk group all of the adverse events occurred within 10 days after results whereas, in the decreased risk group, all of the adverse events occurred six months or later after reviewing test results. These results suggest that people entering into predictive testing with some evidence of clinical depression warrant special vigilance and also suggest that counselling and support should be available for all participants in predictive testing irrespective of the direction of test results.
在加拿大亨廷顿舞蹈症预测性检测项目中，共有135名参与者在四个研究组之一中被随访了至少一年：风险增加组（n = 37）、风险降低组（n = 58）、信息不明确组（n = 17）或未检测组（n = 23）。不良事件的临床标准为自杀未遂或制定自杀未遂计划、精神科住院、持续超过两个月的抑郁、药物滥用显著增加以及重要人际关系破裂。还使用症状自评量表90-R的总体严重程度指数和贝克抑郁量表的变化所衡量的定量标准来识别发生不良事件的人。135名参与者中有20名（14.8%）发生了不良事件。在年龄、性别、婚姻状况、教育程度、精神病史、一般精神痛苦或基线时的社会支持方面，发生或未发生不良事件的人之间没有显著差异。然而，抑郁证据与不良事件频率增加相关（p < 0.04）。不良事件相似，在风险增加或降低的人群以及风险未改变的高危人群中出现频率相当。然而，在风险增加和降低组的不良事件发生时间上发现了显著差异（p < 0.0002）。在风险增加组中，所有不良事件都在结果公布后的10天内发生，而在风险降低组中，所有不良事件都在查看检测结果六个月或更晚之后发生。这些结果表明，有临床抑郁证据而进行预测性检测的人需要特别警惕，也表明无论检测结果的方向如何，都应为预测性检测的所有参与者提供咨询和支持。
