Kosmach-Park Beverly, Coyne Bethany, Gupta Nitika, Mazariegos George
Department of Transplant Surgery, UPMC Children's Hospital, Pittsburgh, Pennsylvania, USA.
Department of Family, Community and Mental Health Systems, University of Virginia School of Nursing, Charlottesville, Virginia, USA.
Pediatr Transplant. 2025 Feb;29(1):e14900. doi: 10.1111/petr.14900.
With improvements in long-term graft function and survival, an increasing population of pediatric liver transplant (LT) recipients now require adult care. A process to successfully transition young adults to adult LT centers is supported in the literature with discussions on the rationale for health care transition (HCT), barriers to transition, stakeholder perspectives, and transfer readiness (TR). Results of outcomes studies are difficult to generalize and there remains no standard of care for HCT in LT. Of concern is that the youth's increasing independence occurs during a period of developmental vulnerability, with a threat to graft function due to risk-taking behaviors, specifically nonadherence, that may lead to rejection, graft loss, and death.
OBJECTIVES/METHOD: The purpose of this comprehensive literature review is to discuss current knowledge, practices, and outcomes of HCT for LT recipients with additional support from literature in solid organ transplant (SOT) and pediatric-onset chronic conditions literature.
Recent position statements in LT and SOT express a greater awareness of the importance of HCT with broad agreement that reflects a similarity in approach in endorsing HCT as an essential process that should be initiated in early adolescence with TR as a primary determinant of transfer; however, standardization with consistent outcomes measurement is lacking. The literature supports transition as an esential component of care that should be initated in early adolescence with programs that address knowlege, skill-development, and advocacy. The engagement of all stakeholders in LT is essential to program development.
There is increasing awareness among the multidisciplinary team of the importance and role of the adult provider in extending transitional care into the adult setting as executive functioning skills mature. Outcome measures need to be clearly defined and standardized. Regulatory agency involvement to validate and support the need for TOC programs is crucial and should promote outcomes research for best practice program standardization.
随着长期移植肝功能和生存率的提高,越来越多的小儿肝移植(LT)受者现在需要成人护理。文献支持将年轻人成功过渡到成人LT中心的过程,其中讨论了医疗保健过渡(HCT)的基本原理、过渡障碍、利益相关者的观点以及转移准备情况(TR)。结局研究的结果难以一概而论,LT中仍没有HCT的护理标准。令人担忧的是,年轻人日益增强的独立性出现在发育易损期,冒险行为,特别是不依从行为可能会威胁移植肝功能,这可能导致排斥反应、移植失败和死亡。
目的/方法:本综合文献综述的目的是在实体器官移植(SOT)和儿童期慢性疾病文献的额外支持下,讨论LT受者HCT的当前知识、实践和结局。
LT和SOT最近的立场声明表达了对HCT重要性的更高认识,广泛一致的观点反映了在认可HCT作为一个应在青春期早期开始的基本过程方面方法的相似性,其中TR是转移的主要决定因素;然而,缺乏一致的结局测量标准化。文献支持过渡是护理的一个重要组成部分,应在青春期早期通过解决知识、技能发展和宣传问题的项目来启动。LT中所有利益相关者的参与对项目开发至关重要。
随着执行功能技能的成熟,多学科团队越来越意识到成人提供者在将过渡性护理扩展到成人环境中的重要性和作用。结局指标需要明确界定和标准化。监管机构参与验证和支持TOC项目的必要性至关重要,并且应该促进最佳实践项目标准化的结局研究。