支持与风险亲属分享遗传检测结果的患者的干预措施:没有元分析的合成 (SWiM)
Lisa Marie Ballard1,2, Rebecca Band3, Anneke M Lucassen4,5,6
1Clinical Ethics, Law and Society (CELS), Primary Care, Population Sciences and Medical Education, University of Southampton, Southampton General Hospital, South Academic Block, Tremona Road, Southampton, SO16 6YD, UK. l.ballard@soton.ac.uk.
与亲属分享遗传测试结果对于疾病风险意识至关重要. 目前的干预措施在改善这种沟通方面表现出有限的有效性,突出了合作开发的必要性.
科学领域:
- 临床遗传学 临床遗传学
- 健康心理学 心理健康心理学
- 基因组医学是基因组医学.
背景情况:
- 基因检测越来越普遍,识别遗传性疾病的易感性.
- 鼓励患者分享结果,但亲属往往不知道他们的遗传风险.
- 对遗传检测结果的有效沟通策略对于家庭健康至关重要.
研究的目的:
- 审查旨在加强亲属之间分享遗传测试结果的干预措施的有效性.
- 发现当前策略中的差距,特别是关于理论框架和患者参与的差距.
主要方法:
- 在主要的健康数据库 (Medline,CINAHL,PsychINFO,AMED) 进行了系统的文献搜索.
- 采用了没有元分析设计的合成方法,确定了五项相关研究.
- 数据提取集中在研究目标,参与者,干预措施,结果和理论基础上.
主要成果:
- 干预表明有效性有限,健康行为理论的应用较弱.
- 没有观察到知识,动机或自我效能的显著增加.
- 干预措施通常被患者和医疗保健专业人员接受,但缺乏患者参与发展.
结论:
- 在临床遗传学中,有很大需要以健康心理学为基础的干预措施,以缓冲遗传信息.
- 未来的干预措施应该从一开始就包括遗传健康专业人员,健康心理学家和患者之间的合作.
- 为未来在家庭中开发有效的遗传信息共享干预措施提供了指导.
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