| Abstrakt: |
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. • Vascularized composite allotransplants (VCA) are the only organ transplants purported to be conducted to improve quality of life. • Yet, despite over 20 years of VCA practice little is known about the actual "life-enhancing" impact(s) of VCA on the patient or their families. • The current measurement of QOL in VCA is conducted without reference to patient-reported outcomes, or the experiences of family/carers. • A new way of analysing VCA QOL is proposed, with patients and their families' narratives at the centre. [ABSTRACT FROM AUTHOR] |
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