Patient preferences for the allocation of deceased donor kidneys for transplantation: a mixed methods study

BackgroundDeceased donor kidneys are a scarce health resource, yet patient preferences for organ allocation are largely unknown. The aim of this study was to determine patient preferences for how kidneys should be allocated for transplantation.MethodsPatients on dialysis and kidney transplant recipients were purposively selected from two centres in Australia to participate in nominal/focus groups in March 2011. Participants identified and ranked criteria they considered important for deceased donor kidney allocation. Transcripts were thematically analysed to identify reasons for their rankings.ResultsFrom six groups involving 37 participants, 23 criteria emerged. Most agreed that matching, wait-list time, medical urgency, likelihood of surviving surgery, age, comorbidities, duration of illness, quality of life, number of organs needed and impact on the recipient's life circumstances were important considerations. Underpinning their rankings were four main themes: enhancing life, medical priority, recipient valuation, and deservingness. These were predominantly expressed as achieving equity for all patients, or priority for specific sub-groups of potential recipients regarded as more "deserving".ConclusionsPatients believed any wait-listed individual who would gain life expectancy and quality of life compared with dialysis should have access to transplantation. Equity of access to transplantation for all patients and justice for those who would look after their transplant were considered important. A utilitarian rationale based on maximizing health gains from the allocation of a scarce resource to avoid "wastage," were rarely expressed. Organ allocation organisations need to seek input from patients who can articulate preferences for allocation and advocate for equity and justice in organ allocation.

[1]  R. Wolfe,et al.  Comparison of mortality in all patients on dialysis, patients on dialysis awaiting transplantation, and recipients of a first cadaveric transplant. , 1999, The New England journal of medicine.

[2]  K. Howard,et al.  Community Preferences for the Allocation of Solid Organs for Transplantation: A Systematic Review , 2010, Transplantation.

[3]  G. Currie,et al.  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. , 2010, Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association.

[4]  David H. Gustafson,et al.  Group Techniques for Program Planning: A Guide to Nominal Group and Delphi Processes , 1976 .

[5]  R. Wolfe,et al.  Improving the allocation system for deceased-donor kidneys. , 2011, The New England journal of medicine.

[6]  Charles W. Plows,et al.  Ethical Considerations in the Allocation of Organs and Other Scarce Medical Resources Among Patients , 1995 .

[7]  M. Stegall The development of kidney allocation policy. , 2005, American journal of kidney diseases : the official journal of the National Kidney Foundation.

[8]  A. Webster,et al.  Characteristics of dialysis important to patients and family caregivers: a mixed methods approach. , 2011, Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association.

[9]  John Hornberger,et al.  Involving Patients in the Cadaveric Kidney Transplant Allocation Process: A Decision-Theoretic Perspective , 1996 .

[10]  Anselm L. Strauss,et al.  Basics of qualitative research : techniques and procedures for developing grounded theory , 1998 .

[11]  L. Ross,et al.  Risk, prognosis, and unintended consequences in kidney allocation. , 2011, The New England journal of medicine.

[12]  H. Howard Patient and public involvement in health , 2006 .

[13]  Richard A. Krueger,et al.  Focus groups : a practical guide for applied research / by Richard A. Krueger , 1989 .

[14]  Eld,et al.  COMPARISON OF MORTALITY IN ALL PATIENTS ON DIALYSIS , PATIENTS ON DIALYSIS AWAITING TRANSPLANTATION , AND RECIPIENTS OF A FIRST CADAVERIC TRANSPLANT , 2000 .

[15]  P. Ubel,et al.  Kidney transplant candidates’ views of the transplant allocation system , 1997, Journal of General Internal Medicine.

[16]  R. Wolfe,et al.  Deceased-donor characteristics and the survival benefit of kidney transplantation. , 2005, JAMA.

[17]  Xuanming Su,et al.  Incorporating recipient choice in kidney transplantation. , 2004, Journal of the American Society of Nephrology : JASN.

[18]  Xuanming Su,et al.  Diminishing Significance of HLA Matching 
 in Kidney Transplantation , 2004, American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons.

[19]  Y. Gunaratnam,et al.  The research priorities of patients attending UK cancer treatment centres: findings from a modified nominal group study , 2007, British Journal of Cancer.

[20]  Manfred Max Bergman,et al.  Advances in mixed methods research , 2008 .

[21]  D. Douglas Should everyone have equal access to organ transplantation? An argument in favor. , 2003, Archives of internal medicine.

[22]  R. Rodger,et al.  Allocation of deceased donor kidneys for transplantation: opinions of patients with CKD. , 2005, American journal of kidney diseases : the official journal of the National Kidney Foundation.

[23]  A D Oxman,et al.  Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. , 2006, The Cochrane database of systematic reviews.

[24]  Janet Mancini Billson,et al.  Focus Groups: A Practical Guide for Applied Research , 1989 .

[25]  M. Tonelli,et al.  The impact of waiting time and comorbid conditions on the survival benefit of kidney transplantation. , 2005, Kidney international.