Managing Prognosis in Precision Medicine: Utility, Imagination, and Communication.
Managing Prognosis in Precision Medicine: Utility, Imagination, and Communication.
复制标题
DOI：
10.3390/children10040664
复制
发表时间：
2023-03-31
期刊：
影响因子：
--
通讯作者：
中科院分区：
文献类型：
--
作者：
关于医生如何预测和沟通预后的研究主要集中在临终关怀上。不出所料，随着基因组技术作为一种预后工具获得吸引力，人们的关注点也集中在终止性上，研究重点是如何利用遗传结果终止妊娠或将护理转向新生儿的姑息治疗。然而，基因组结果也对活着的患者如何为未来做准备产生了强大的影响。基因组检测提供了广泛的和早期的，虽然复杂，不确定，和转移预后信息。在这篇文章中，我们认为，随着基因组检测发生得越来越早，越来越多地在筛查背景下，研究人员和临床医生必须努力理解和管理结果的预后影响。虽然我们对有症状人群预后的社会心理和沟通方面的理解是不完整的，但它比我们在筛查背景下的理解有了进一步的进展，因此为进一步研究提供了有用的经验教训和可行的机会。通过提供一个跨学科和跨专业的角度对遗传学预后的心理社会和沟通方面，我们讨论了从新生儿期到成年期的遗传学方面的解释，突出医学专业和患者人群，特别是信息考虑在基因组医学的预后信息的纵向管理。
Research on how physicians predict and communicate prognosis focuses primarily on end-of-life care. Unsurprisingly, as genomic technology gains traction as a prognostic tool, the focus has also been on terminality, with research focused on how genetic results may be used to terminate pregnancies or redirect care towards palliation for neonates. However, genomic results also have powerful impacts on how patients who live prepare for their futures. Genomic testing provides broad-reaching and early—albeit complex, uncertain, and shifting—prognostic information. In this essay, we argue that as genomic testing occurs earlier and increasingly in a screening context, researchers and clinicians must strive to understand and manage the prognostic implications of results. While our understanding of the psychosocial and communicational aspects of prognosis in symptomatic populations is incomplete, it has progressed further than our understanding in a screening context and therefore provides useful lessons and feasible opportunities for further research. By providing an interdisciplinary and inter-specialty perspective on the psychosocial and communicational aspects of prognosis in genetics, we discuss prognostication with respect to genetics from the neonatal period through adulthood, highlighting medical specialties and patient populations that are especially informative for considering the longitudinal management of prognostic information in genomic medicine.
登录
查看更多内容
生存模型，以支持有关高级阶段囊性纤维化患者进行预先护理计划的共同决策。
影响因子：
4.1
作者：
Hajizadeh N;Zhang M;Akerman M;Kohn N;Mathew A;Hadjiliadis D;Wang J;Lesser ML
通讯作者：
Lesser ML
影响因子：
5.2
作者：
Dellon, Elisabeth P.;Chen, Elaine;Cohen, Rubin I.
通讯作者：
Cohen, Rubin I.
影响因子：
9.6
作者：
Dellon, Elisabeth P.;Sawicki, Gregory S.;Hanson, Laura C.
通讯作者：
Hanson, Laura C.
影响因子：
5.2
作者：
Chassagne, Aline;Pelissier, Aurore;Faivre, Laurence
通讯作者：
Faivre, Laurence
影响因子：
4
作者：
Despotes, Katherine A.;Donaldson, Scott H.
通讯作者：
Donaldson, Scott H.