A group approach to genetic counselling of cardiomyopathy patients: satisfaction and psychological outcomes sufficient for further implementation
A group approach to genetic counselling of cardiomyopathy patients: satisfaction and psychological outcomes sufficient for further implementation
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DOI：
10.1038/ejhg.2015.10
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发表时间：
2015-10-01
影响因子：
5.2
通讯作者：
van Langen, Irene M.
中科院分区：
文献类型：
--
作者：
Otten, Ellen;Birnie, Erwin;van Langen, Irene M.
在日常临床遗传学实践中引入下一代测序正在增加可以在DNA水平上确认的遗传疾病的数量，从而增加了级联筛查的可能性。这导致对遗传咨询的需求增加，而提供这种咨询的专业人员数量有限。因此，我们在地区医院对有症状的心肌病患者进行了群体遗传咨询，以评估这是否是一种可接受的个体咨询替代方案。我们进行了一项队列研究，咨询前和咨询后的病人测量问卷，并辅以评估的小组咨询格式的专业人士参与。来自荷兰北方8家地区医院的患者纳入研究。问卷包括病人的特征，心理测量（个人知觉控制（PPC），状态和特质焦虑量表（STAI）），和满意度与辅导员，咨询内容和设计。总共有82名患者（平均年龄57.5岁）参加了13个小组会议之一。中位PPC和STAI评分显示，辅导后的控制力显着提高，焦虑程度降低。患者报告他们对辅导员感到满意，近75%的患者对团体辅导感到满意。区域专业人员总体上也对小组会议感到满意。遗传学专业人士不太满意，主要是因为他们认为大量的时间投资和低于预期的群体互动。因此，一组的方法，心脏遗传咨询是可行的，可访问的，心理上有效的，并可能是一种可能的方法，以咨询越来越多的患者人数在心脏遗传学。
The introduction of next-generation sequencing in everyday clinical genetics practise is increasing the number of genetic disorders that can be confirmed at DNA-level, and consequently increases the possibilities for cascade screening. This leads to a greater need for genetic counselling, whereas the number of professionals available to provide this is limited. We therefore piloted group genetic counselling for symptomatic cardiomyopathy patients at regional hospitals, to assess whether this could be an acceptable alternative to individual counselling. We performed a cohort study with pre-and post-counselling patient measurements using questionnaires, supplemented with evaluations of the group counselling format by the professionals involved. Patients from eight regional hospitals in the northern part of the Netherlands were included. Questionnaires comprised patient characteristics, psychological measures (personal perceived control (PPC), state and trait anxiety inventory (STAI)), and satisfaction with counsellors, counselling content and design. In total, 82 patients (mean age 57.5 year) attended one of 13 group sessions. Median PPC and STAI scores showed significantly higher control and lower anxiety after the counselling. Patients reported they were satisfied with the counsellors, and almost 75% of patients were satisfied with the group counselling. Regional professionals were also, overall, satisfied with the group sessions. The genetics professionals were less satisfied, mainly because of their perceived large time investment and less-than-expected group interaction. Hence, a group approach to cardiogenetic counselling is feasible, accessible, and psychologically effective, and could be one possible approach to counselling the increasing patient numbers in cardiogenetics.