AboutFace, University of York, UK.
Department of Communication, University of Pittsburgh, USA.
Transplant Rev (Orlando). 2022 Jul;36(3):100708. doi: 10.1016/j.trre.2022.100708. Epub 2022 May 21.
Vascularized composite allotransplants (VCA) are the only organ transplants purported to be conducted principally to improve quality of life (QOL), rather than to extend or save life - hence they are described as "life-enhancing" (or "life-rescuing"). This is in contrast to "life-extending" solid organ transplantation (SOT). Yet despite more than 20 years of VCA practice (1997-present), little is known about the actual "life-enhancing" impact(s) of VCA on the patient or their families. This article presents an overview of the state of the VCA field and what we still don't know about VCA outcomes, specifically focussing on face and hand transplants as both visible, emotional, and communicative organs. The current measurement of QOL in VCA is insufficient, both conceptually and analytically. It is also, critically, conducted without reference to patient-reported outcomes, or the experiences of family and carers. Drawing on published research in VCA and SOT, as well as preliminary, anecdotal VCA patient interview research, this paper highlights how and why the QOL practices in the field of VCA are not fit for purpose and proposes new ways of analysing QOL. In conclusion, it outlines what needs to happen for the VCA field to move forward positively, and with patients and their families more central to VCA practice and research.
血管化复合组织同种异体移植(VCA)是唯一被认为主要用于提高生活质量(QOL)而不是延长或拯救生命的器官移植——因此被描述为“增强生命”(或“挽救生命”)。这与“延长生命”的实体器官移植(SOT)形成对比。然而,尽管 VCA 实践已经超过 20 年(1997 年至今),但对于 VCA 对患者或其家属的实际“增强生命”影响知之甚少。本文概述了 VCA 领域的现状,以及我们对 VCA 结果仍不清楚的地方,特别是重点关注面部和手部移植,因为它们既是可见的、情绪化的,也是交流的器官。目前 VCA 中 QOL 的测量在概念和分析上都不充分。至关重要的是,它没有参考患者报告的结果,也没有参考患者家属和护理人员的意见。本文借鉴了 VCA 和 SOT 领域的已发表研究,以及初步的、轶事性的 VCA 患者访谈研究,强调了为什么和如何 VCA 领域的 QOL 实践不适合目的,并提出了新的 QOL 分析方法。总之,本文概述了 VCA 领域需要采取哪些措施才能积极向前发展,并使患者及其家属在 VCA 实践和研究中更加重要。