New Co-authored article on VCA and Quality of Life
Vascularized composite allotransplants (VCA) are the only organ transplants purported to be conducted to improve quality of life, described as “life-enhancing”. 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. As a result, the current measurement of quality of life in VCA is insufficient; conducted without reference to patient-reported outcomes, or the experiences of family and carers.
This co-authored article by the AboutFace team: Fay Bound Alberti, Matthew Ridley and Sarah Hall, with collaborators Jim Benedict and Emily Herrington, proposes a new way of analysing VCA quality of life, with patients and their families’ narratives at the centre.
The article is available open access in Transplantation Reviews.
Article Overview
In this article, the authors argue that the current measurement of quality of life in VCA is insufficient, conceptually and analytically. Further, they emphasise the importance of empowering VCA patients and families to narrate their stories.
The article shows that not all VCA patients have been followed up after the procedure. And, if patients were followed up with after the procedure, the data is not always available. Further, there is a lack of long-term follow up. Most papers on this subject cover the immediate six or twelve months after surgery. There is a clear bias towards the surgical perspective in published outcomes of VCA, largely neglecting the patient perspective. In addition , outcome articles tend to use succinct statements to describe patient quality of life outcomes, which are oversimplified and reductionist. These statements trivialise the fuller patient experience, including their health and well-being.
The article 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.
Keywords: Vascularized composite allotransplantation; Quality of life; Outcome measurement; Psychosocial assessment; Patient perspective; Family/carer perspective