Abstract

Objective

Genomic testing for early-onset dementia is becoming more accessible, along with predictive testing for at-risk relatives; however, complex counselling issues are important to address. The topic of suicide often has stigma associated, and thoughts or experiences may not be volunteered without prompting. Little has been published with consideration to suicide rates in the context of family experiences and their significance in genetic counselling for relatives of people with Huntington disease and frontotemporal dementia.

Design

This study included pedigree information for 267 symptomatic individuals with frontotemporal dementia or Huntington disease, provided via genetic counselling clinics.

Main Outcome Measures

Descriptive statistics and suicide rate calculations based on family reported pedigree data.

Results

The suicide rate was 2996 per 100,000 compared with the population rate of 10 per 100,000. Approximately one in 15 families reported suicide of an affected family member, and file notes indicated that one in five families had experienced suicide, suicidal thoughts or suicide attempts in one or more affected, unaffected or pre-symptomatic relative.

Conclusion

Health professional awareness of family experiences, including suicide of a relative, is vital in facilitating client decisions about genetic testing, and in providing adequate psychosocial support during the process of genetic testing and adaption to results.

中文翻译：

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额颞叶痴呆和亨廷顿病自杀：家庭报告的谱系数据分析及其对无症状亲属遗传保健的影响

摘要

客观的

早发性痴呆的基因组检测以及对高危亲属的预测检测变得越来越容易；然而，复杂的咨询问题需要解决。自杀的话题通常带有耻辱感，如果没有提示，可能不会自愿提出想法或经历。考虑到家庭经历背景下的自杀率及其在亨廷顿病和额颞叶痴呆患者亲属遗传咨询中的意义，很少有文献发表。

设计

这项研究包括通过遗传咨询诊所提供的 267 名额颞叶痴呆或亨廷顿病症状个体的谱系信息。

主要观察指标

基于家庭报告的谱系数据的描述性统计和自杀率计算。

结果

自杀率为每 100,000 人 2996 人，而人口率为每 100,000 人 10 人。大约有 15 个家庭报告了一名受影响的家庭成员自杀，文件记录表明，五分之一的家庭在一名或多名受影响、未受影响或症状前的亲属中经历过自杀、自杀念头或自杀企图。

结论

健康专业人员对家庭经历（包括亲戚自杀）的认识对于促进客户对基因检测的决定以及在基因检测和适应结果的过程中提供足够的社会心理支持至关重要。