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囊性纤维化和向成人医疗保健的过渡。

Cystic fibrosis and transition to adult medical care.

机构信息

Division of Adolescent and Young Adult Medicine, Center for Clinical and Community Research, Children's National Medical Center, George Washington University School of Medicine and Health Sciences, Washington, DC, USA.

出版信息

Pediatrics. 2010 Mar;125(3):566-73. doi: 10.1542/peds.2009-2791. Epub 2010 Feb 22.

Abstract

Transition of young adults with cystic fibrosis (CF) from pediatric to adult medical care is an important priority, because many patients are living well into their fourth decade, and by 2010 more than half of all people living with CF will be older than 18 years. Transition to adulthood, a developmental process of skill-building in self-management supported by the health system, is important for the successful transfer to adult CF care. The US Cystic Fibrosis Foundation has been proactive in preparing for increasing numbers of young adults in need of specialized adult-oriented care by creating specialized clinical fellowships for physician providers and mandating establishment of adult CF programs. Despite these initiatives, how to best facilitate transition and to define and measure successful outcomes after transfer to adult care remains unclear. Many adults with CF continue to receive care in the pediatric setting, whereas others transfer before being developmentally prepared. In this state-of-the-art review we provide context for the scope of the challenges associated with designing and evaluating health care transition for adolescents and young adults with CF and implications for all youth with special health care needs.

摘要

将患有囊性纤维化 (CF) 的年轻人从儿科医疗过渡到成人医疗是一个重要的优先事项,因为许多患者的寿命已经延长到了第四个十年,到 2010 年,超过一半的 CF 患者将超过 18 岁。向成年期的过渡是一个在医疗系统支持下自我管理技能建立的发展过程,对于成功过渡到成人 CF 护理至关重要。美国囊性纤维化基金会 (US Cystic Fibrosis Foundation) 通过为医生提供者创建专门的临床研究员职位并要求建立成人 CF 项目,积极为越来越多需要专门成人导向护理的年轻人做好准备。尽管有这些举措,但如何最好地促进过渡以及定义和衡量转移到成人护理后的成功结果仍不清楚。许多 CF 成年人继续在儿科环境中接受治疗,而另一些成年人则在没有充分准备的情况下进行转移。在这篇最新综述中,我们为设计和评估患有 CF 的青少年和年轻人的医疗过渡所面临的挑战范围提供了背景,并为所有有特殊医疗需求的青年带来了影响。

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