Why quality-of-life data collection and use should be standardized when evaluating candidates for hand transplantation
This article argues for 3 mutually reinforcing interventions in the field of hand transplantation (HTx): (1) collection of qualitative data about hand transplant recipients' subjective quality of life (QoL) outcomes, (2) multicenter standardization of data collection, and (3) use of data to develop evidence-based, standardized protocols for HTx candidate evaluation and information disclosure. These interventions are needed to improve candidate evaluation and informed consent processes in HTx, wherein the highly personal nature of desired outcomes justifies holding a candidate's consent to a standard approaching authenticity rather than the usual minimal standard of being informed and voluntary.
|Persistent URL||dx.doi.org/10.1001/amajethics.2019.974, hdl.handle.net/1765/120982|
|Journal||AMA Journal of Ethics|
Kumnig, M. (Martin), Massey, E.K, & Parker, L.S. (Lisa S.). (2019). Why quality-of-life data collection and use should be standardized when evaluating candidates for hand transplantation. AMA Journal of Ethics (Vol. 21, pp. 974–979). doi:10.1001/amajethics.2019.974