Patient decision making about organ quality in liver transplantation.

Abstract

It is challenging to discuss the use of high-risk organs with patients, in part because of the lack of information about how patients view this topic. This study was designed to determine how patients think about organ quality and to test formats for risk communication. Semistructured interviews of 10 patients on the waiting list revealed limited understanding about the spectrum of organ quality and a reluctance to consider anything but the best organs. A computerized quantitative survey was then conducted with an interactive graph to elicit the risk of graft failure that patients would accept. Fifty-eight percent of the 95 wait-listed patients who completed the survey would accept only organs with a risk of graft failure of 25% or less at 3 years, whereas 18% would accept only organs with the lowest risk possible (19% at 3 years). Risk tolerance was increased when the organ quality was presented relative to average organs rather than the best organs and when feedback was provided about the implications for organ availability. More than three-quarters of the patients reported that they wanted an equal or dominant role in organ acceptance decisions. Men tended to prefer lower risk organs (mean acceptable risk = 29%) in comparison with women (mean acceptable risk = 35%, P = 0.04), but risk tolerance was not associated with other demographic or clinical characteristics (eg, the severity of liver disease). In summary, patients want to be involved in decisions about organ quality. Patients' risk tolerance varies widely, and their acceptance of high-risk organs can be facilitated if we present the risks of graft failure with respect to average organs and provide feedback about the implications for organ availability.