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Cognitive and affective outcomes of genetic counselling in the Netherlands at group and individual level: a personalized approach seems necessary.
European Journal of Human Genetics ( IF 3.7 ) Pub Date : 2020-04-27 , DOI: 10.1038/s41431-020-0629-5
Jan S Voorwinden 1 , Mirjam Plantinga 2 , Margreet Ausems 3 , Nine Knoers 2 , Mary Velthuizen 3 , Erwin Birnie 2 , Anneke M Lucassen 4 , Adelita V Ranchor 1 , Irene M van Langen 2
Affiliation  

We performed a large outcome study at group and individual level in which the goals of genetic counselling were operationalized into cognitive and affective outcomes: empowerment, perceived personal control and anxiety. We then examined which socio-demographic and clinical variables were associated with changes in these outcomes. Data came from 1479 counselees who completed questionnaires (GCOS-18, PPC and STAI) at three time points: before the start of genetic counselling, after the first consultation and after the results of genetic counselling were disclosed. Results showed that at group level empowerment, perceived personal control and anxiety improved significantly after the whole genetic counselling process. Effect-sizes were medium for empowerment and small for the other outcomes. At individual level, 48% of counselees improved in empowerment, 21% in perceived personal control and 17% in anxiety. Around 10% of counselees worsened on all outcomes. Only 'reason for referral' and 'genetic test result' were significantly associated with changes in outcomes. This study demonstrated improvements among counselees in cognitive and affective outcomes after genetic counselling at group level. However, our results also suggest that there are opportunities for improvement at individual level, as many counselees remained stable and some even worsened on all outcomes. Routine outcome monitoring could help to explore the needs of counselees and could help to identify counselees who worsen.

中文翻译:

荷兰在团体和个人层面上的遗传咨询的认知和情感效果:个性化的方法似乎是必要的。

我们在小组和个人层面进行了一项大型的结局研究,其中将遗传咨询的目标具体化为认知和情感结局:授权,个人控制感和焦虑感。然后,我们检查了哪些社会人口统计学和临床​​变量与这些结局的变化相关。数据来自1479位被调查者,他们在三个时间点完成了问卷(GCOS-18,PPC和STAI):遗传咨询开始之前,首次咨询之后以及披露遗传咨询结果之后。结果显示,在整个基因咨询过程后,在小组一级的授权,感知到的个人控制和焦虑明显改善。效果大小对于赋权而言是中等的,对于其他结果而言则很小。在个人层面上,48%的受咨询者的权能得到了改善,个人控制感得到了21%,焦虑感得到了17%。约有10%的受咨询者的所有结果都恶化了。只有“转诊原因”和“遗传测试结果”与结果变化显着相关。这项研究表明,在小组水平上进行遗传咨询后,被咨询者在认知和情感结果方面的改善。但是,我们的结果还表明,由于许多参赞者保持稳定,有些人在所有结局上甚至有所恶化,因此在个人层面有改善的机会。常规结果监测可以帮助探索被咨询者的需求,并可以帮助确定恶化的被咨询者。基因检测结果与结果变化显着相关。这项研究表明,在小组水平上进行遗传咨询后,被咨询者在认知和情感结果方面的改善。但是,我们的结果也表明,由于许多参赞者保持稳定,有些人在所有结局上甚至有所恶化,因此在个人层面上仍有改善的机会。常规结果监测可以帮助探索被咨询者的需求,并可以帮助确定恶化的被咨询者。基因检测结果与结果变化显着相关。这项研究表明,在小组水平上进行遗传咨询后,被咨询者在认知和情感结果方面的改善。但是,我们的结果还表明,由于许多参赞者保持稳定,有些人在所有结局方面甚至有所恶化,因此在个人层面有改善的机会。常规结果监测可以帮助探索被咨询者的需求,并可以帮助确定恶化的被咨询者。因为许多受咨询者保持稳定,有些甚至在所有结局上都恶化了。常规结果监测可以帮助探索被咨询者的需求,并可以帮助确定恶化的被咨询者。因为许多受咨询者保持稳定,有些甚至在所有结局上都恶化了。常规结果监测可以帮助探索被咨询者的需求,并可以帮助确定恶化的被咨询者。
更新日期:2020-04-27
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