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患者植入前基因检测的决策体验:对相关心理框架的看法

Patients' preimplantation genetic testing decision-making experience: an opinion on related psychological frameworks.

作者信息

Pastore L M, Cordeiro Mitchell C N, Rubin L R, Nicoloro-SantaBarbara J, Genoff Garzon M C, Lobel M

机构信息

Department of Obstetrics, Gynecology and Reproductive Medicine, Stony Brook Medicine, Stony Brook, NY, USA.

Department of Gynecology and Obstetrics, Johns Hopkins University School of Medicine, Baltimore, MD, USA.

出版信息

Hum Reprod Open. 2019 Oct 4;2019(4):hoz019. doi: 10.1093/hropen/hoz019. eCollection 2019.

Abstract

The process of deciding whether to pursue preimplantation genetic testing (PGT) of an embryo is highly stressful for individuals and couples and has adverse emotional consequences (e.g. distress and uncertainty). PGT influences patients' lives in both positive and negative ways and is experienced at an individual level, as a dyadic unit, as a family member and as part of the society. Here, we argue that providing a conceptual framework with which to understand the experience of decision making' about PGT for monogenic disease (PGT-M) testing specifically, as well as the factors contributing to decisional distress' and `uncertainty' that patients endure as a result-apart from what decision they make-is crucial to optimizing patient counseling, satisfaction and outcomes in the field of ART. Derived from psychological theory, the framework proposed here identifies three categories of contributing factors to decisional distress and uncertainty in considering PGT-M; namely, 'intraindividual', 'interpersonal' and 'situational' factors. We reviewed evidence from the PGT literature to inform our framework. Well-accepted theories of stress and health decision making were also reviewed for their relevance to PGT-M decision making, focusing on potential distress and uncertainty. Our novel conceptual framework can be used to inform clinical practice, to advance research and to aid the development of interventions for individuals and couples who are deciding whether or not to use PGT-M. Alleviating emotional distress and uncertainty can improve patients' well-being during their reproductive journey.

摘要

对于个人和夫妇而言,决定是否对胚胎进行植入前基因检测(PGT)的过程压力巨大,并会产生不良情绪后果(如痛苦和不确定性)。PGT对患者生活的影响既有积极的一面,也有消极的一面,并且患者会从个体层面、二元关系层面、家庭成员层面以及作为社会一部分的层面来体验这种影响。在此,我们认为提供一个概念框架,用以具体理解关于单基因疾病(PGT-M)检测的PGT“决策体验”,以及导致患者因此承受的“决策困扰”和“不确定性”的因素(除了他们做出的决策之外),对于优化辅助生殖技术领域的患者咨询、满意度和治疗结果至关重要。源自心理学理论,这里提出的框架确定了在考虑PGT-M时导致决策困扰和不确定性的三类促成因素;即“个体内部”、“人际”和“情境”因素。我们回顾了PGT文献中的证据,以为我们的框架提供信息。还审查了广为接受的压力和健康决策理论与PGT-M决策的相关性,重点关注潜在的困扰和不确定性。我们新颖的概念框架可用于为临床实践提供信息、推动研究以及帮助为正在决定是否使用PGT-M的个人和夫妇开发干预措施。减轻情绪困扰和不确定性可以改善患者在生殖过程中的幸福感。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/32f5/6777985/01f33d2f6084/hoz019f1.jpg

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