VALUES, PREFERENCES, AND RISK TOLERANCE OF PEOPLE WAITLISTED FOR KIDNEY TRANSPLANT: A SYSTEMATIC REVIEW
Rachel Cutting1, Pinika Patel1, Nicole De La Mata1, Georgina Irish2,3, Melanie Wyld1,4, Angela Webster1,5,6 1Sydney School of Public Health, The University of Sydney, Camperdown, NSW, Australia2Australia and New Zealand Dialysis and Transplant (ANZDATA) Registry, South Australian Health and Medical Research Institute (SAHMRI), Adelaide, SA, Australia3Central and Northern Adelaide Renal and Transplantation Service, Royal Adelaide Hospital, Adelaide, SA, Australia4Department of Renal and Transplant Medicine, Westmead Hospital, Westmead, NSW, Australia5National Health and Medical Research Council Clinical Trials Centre, The University of Sydney, Camperdown, NSW, Australia6Westmead Applied Research Centre, Westmead Hospital, Westmead, NSW, Australia
Abstract
Aims: To understand the values, preferences, and risk tolerance of patients on the kidney waitlist when offered an extended criteria, increased viral and/or increased cancer risk donor kidney.
Background: Transplant clinicians typically make the decision to accept or decline a deceased donor kidney for a potential recipient, often under time pressure. It is unclear what recipient views are, and whether they are incorporated during decision-making.
Methods: We systematically searched Scopus, MEDLINE, Embase, CINAHL, Web of Science, ProQuest, Informit, PsychINFO and Grey Literature from database inception to 10 March 2023. We included all studies describing the values, preferences, and risk tolerance of adult patients active on, or under assessment for, the kidney waitlist when offered an extended criteria, increased viral and/or increased cancer donor kidney. We critically appraised all included papers using the Johanna Briggs Institute checklists and synthesised evidence using a narrative and thematic method.
Results: We included 25 studies (76% from the United States) comprising 2662 participants. We identified four themes and nine subthemes. Main themes: patients desired information and preferred it to be individualised; clinician opinion and input were valued; shared decision-making provided an opportunity to voice preferences and collaboratively make decisions; risk tolerance was influenced by multiple recipient and donor factors. The latter theme included nine subthemes: knowledge; fear of post-transplant complications; perceived health and quality of life on dialysis; waiting time; recipient age; prior transplant; donor age; infection type and kidney quality.
Conclusion: Knowledge was highly valued and a key factor in influencing risk tolerance. Continual education and reassessment of waitlist patients’ values, preferences, and risk thresholds will ensure best patient-centred decisions are made at time of donor offer.
Biography
Rachel is a Research Officer at the Sydney School of Public Health, University of Sydney and a Registered Nurse. Her primary role at The University of Sydney is to assist academics with research projects, focussing on improving efficiency, quality and safety in organ procurement and access and equity to health services for those with kidney failure.