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Psychological adaptation to molecular autopsy findings following sudden cardiac death in the young.
Genetics in Medicine ( IF 6.6 ) Pub Date : 2018-10-16 , DOI: 10.1038/s41436-018-0338-4
Kezia Bates 1, 2 , Joanna Sweeting 1, 2 , Laura Yeates 1, 3 , Kristie McDonald 1, 4 , Christopher Semsarian 1, 2, 3 , Jodie Ingles 1, 2, 3
Affiliation  

PURPOSE Sudden cardiac death (SCD) in the young is a devastating event occurring in otherwise healthy individuals. Postmortem genetic testing (molecular autopsy) may help identify a cause, though there is potential for uncertainty. We report psychological adaptation to molecular autopsy findings amongst family members after a young SCD. METHODS First-degree relatives who had experienced a SCD of a young relative and attended a specialized cardiac genetic clinic were invited to complete a cross-sectional, self-report survey comprising a number of validated scales. Clinical, genetic, and family history information was collected from the medical record. RESULTS Thirty-three individuals from 27 families (response rate 48%) completed a survey (mean age 49 ± 12 years, 49% were mothers of the decedent). Eleven (36%) reported poor adaptation to genetic information, and compared with those with good adaptation, they were more likely to have worse posttraumatic stress symptoms (p = 0.0004) and depression (p = 0.01). Perceived support was lower in those reporting poor adaptation, including social support (p < 0.0001) and perceived support from significant others (p = 0.03), family members (p = 0.001), and friends (p = 0.0002). CONCLUSION Adaptation to molecular autopsy findings may be difficult for some relatives following a young SCD. Careful pretest genetic counseling and integration of psychological support is needed.

中文翻译:

年轻人心源性猝死后对分子尸检结果的心理适应。

目的 年轻人心源性猝死 (SCD) 是发生在其他健康个体中的毁灭性事件。死后基因检测(分子尸检)可能有助于确定原因,但可能存在不确定性。我们报告了年轻 SCD 后家庭成员对分子尸检结果的心理适应。方法 曾经历过年轻亲属 SCD 并参加专门的心脏遗传诊所的一级亲属被邀请完成一项包含许多经过验证的量表的横断面自我报告调查。从病历中收集临床、遗传和家族史信息。结果 来自 27 个家庭的 33 个人(答复率 48%)完成了一项调查(平均年龄 49 ± 12 岁,49% 是死者的母亲)。11 人 (36%) 报告对遗传信息的适应较差,与适应良好的人相比,他们更有可能出现更严重的创伤后应激症状 (p = 0.0004) 和抑郁症 (p = 0.01)。那些报告适应能力差的人的感知支持较低,包括社会支持 (p < 0.0001) 和重要他人 (p = 0.03)、家庭成员 (p = 0.001) 和朋友 (p = 0.0002) 的感知支持。结论 对于年轻 SCD 后的一些亲属来说,适应分子尸检结果可能很困难。需要仔细的测试前遗传咨询和心理支持的整合。包括社会支持 (p < 0.0001) 和来自重要他人 (p = 0.03)、家庭成员 (p = 0.001) 和朋友 (p = 0.0002) 的感知支持。结论 对于年轻 SCD 后的一些亲属来说,适应分子尸检结果可能很困难。需要仔细的测试前遗传咨询和心理支持的整合。包括社会支持 (p < 0.0001) 和来自重要他人 (p = 0.03)、家庭成员 (p = 0.001) 和朋友 (p = 0.0002) 的感知支持。结论 对于年轻 SCD 后的一些亲属来说,适应分子尸检结果可能很困难。需要仔细的测试前遗传咨询和心理支持的整合。
更新日期:2018-10-16
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