Patient and health professional preferences for organ allocation and procurement, end-of-life care and organization of care for patients with chronic kidney disease using a discrete choice experiment.

BACKGROUND Clinical practice, policy and research, and the ethical bases upon which they are founded, should be systematically and transparently informed by both patient and professional values. METHODS A discrete choice experiment was utilized to understand and quantify the preferences of 351 Canadian patients and healthcare providers in relation to ethically challenging aspects of the management of chronic kidney disease (CKD): procurement and allocation of organs for transplantation, end-of-life care discussions and decision making and the identities of those providing primary care. RESULTS Patients and health professionals had clear preferences for detailed prognostic information, early advance care planning, shared end-of-life decision making, coordinated models of care that enhance interaction and communication between primary and tertiary care and a more utilitarian approach of best match over first come, first served for allocating deceased donor kidneys. These data also suggest that the innovative strategies of non-directed anonymous donation and paired kidney exchange that are slowly being implemented internationally will be acceptable to both patients and healthcare providers. CONCLUSIONS Current models of CKD care do not consistently reflect the preferences or priorities of either health professionals or patients.