Understanding kidney transplant patients' treatment choices: The interaction of emotion with medical and social influences on risk preferences

Following renal transplantation patients experience on-going immunosuppressant medication to reduce the risk of graft rejection. Over the long term the side effects of immunosuppressive drugs may affect graft survival and significantly increase risks of cancers, stroke and cardiovascular disease. To reduce these risks research is underway to develop a biomarker test to identify those patients who are likely to be ‘tolerant’ to their graft and therefore able to reduce immunosuppression. Biomarker tests may however incorrectly identify some patients as tolerant, thus jeopardising their graft. Following a quantitative assessment of risk preferences we undertook a qualitative study to investigate the range of influences that shaped the substantial variations found in the level of risk transplant recipients were hypothetically willing to take. In-depth interviews were carried out in the United Kingdom between May 2013 and July 2014 with 24 transplant recipients all of whom had stable kidney graft function. These interviews identified a range of factors that patients take into account when making risk assessments, including familial views, trust and the ritual of ‘gift exchange’ that permeates the social space of kidney transplantation. Our data support the notion that emotion is not part of a linear process, preceding and separate to reason, but is intertwined with personal understanding and perception of risk and involves a complex interplay between different influences on decision-making. Our data also support Lupton's view that risk judgements are shared and collective rather than located within the individual and suggests that patient choice rather than involving a purely rational weighing of medical benefit is often based on influences that may not accord with the framework nor intention of medical professionals and medical research.