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囊性纤维化:应对从儿科到成人导向型医疗保健的转变。

Cystic fibrosis: addressing the transition from pediatric to adult-oriented health care.

作者信息

Kreindler James L, Miller Victoria A

机构信息

The Children's Hospital of Philadelphia, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA ; Department of Pediatrics, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.

The Children's Hospital of Philadelphia, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA ; Department of Anesthesiology and Critical Care Medicine, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.

出版信息

Patient Prefer Adherence. 2013 Dec 11;7:1221-6. doi: 10.2147/PPA.S37710.

Abstract

Survival for patients with cystic fibrosis (CF) increased to nearly 40 years in 2012 from the early childhood years in the 1940s. Therefore, patients are living long enough to require transition from pediatric CF centers to adult CF centers. The goal of transition is for the young adult to be engaged in the adult health care system in ways that optimize health, maximize potential, and increase quality of life. A successful transition promotes autonomy and responsibility with respect to one's own health. Currently, there is an information gap in the literature with respect to psychological models that can help guide informed transition processes. In this review, we establish the framework in which transition exists in CF; we review some of the published literature from the last 20 years of experience with transition in CF centers around the world; and we discuss psychological models of pediatric illness that can help to explain the current state of transition to adult-oriented care from pediatric-oriented care and help to formulate new models of ascertaining readiness for transition. Finally, we look at our current knowledge gaps and opportunities for future research endeavors.

摘要

囊性纤维化(CF)患者的生存期从20世纪40年代的幼儿期延长至2012年的近40岁。因此,患者活得足够长,需要从儿科CF中心过渡到成人CF中心。过渡的目标是让年轻成年人以优化健康、最大化潜力和提高生活质量的方式融入成人医疗保健系统。成功的过渡能促进个人在自身健康方面的自主性和责任感。目前,关于有助于指导明智过渡过程的心理模型,文献中存在信息空白。在本综述中,我们建立了CF中过渡存在的框架;我们回顾了过去20年全球CF中心过渡经验的一些已发表文献;我们讨论了儿科疾病的心理模型,这些模型有助于解释从以儿科为导向的护理向以成人为主的护理过渡的现状,并有助于制定确定过渡准备情况的新模式。最后,我们审视了当前的知识空白以及未来研究努力的机会。

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