Values, Preferences, and Risk Tolerance of People Waitlisted for a Kidney Transplant Regarding Potential Deceased Donor Organ Profiles: A Systematic Review

Abstract

Background: Incorporating the views of people waitlisted for a kidney transplant is important when clinicians consider any donor kidney offer.

Methods: We conducted a systematic review of quantitative and qualitative studies in adult patients on, or under assessment for, the kidney waitlist. We focused on views of extended criteria, increased viral (blood-borne virus), or increased cancer risk in deceased donor kidneys. We systematically searched databases and conference proceedings until April 2024, excluding studies of children, case reports, and commentaries. Studies were appraised using the Johanna Briggs Institute checklists and synthesized using a convergent segregated approach, incorporating narrative and thematic methods.

Results: We included 25 studies (2630 participants) comprising quantitative surveys, questionnaires, conjoint analysis, and discrete choice experiments (n = 16; 64%) and qualitative semi-structured, in-depth interviews and focus groups (n = 9; 36%). Most studies were from the United States (n = 19; 76%) and focused on extended criteria and increased viral risk donors (n = 24; 96%), with 1 study considering general risks (4%). None focused on increased cancer-risk donors. We identified 4 themes and 2 subthemes: (1) I want to be free from dialysis, (2) I do not want more health problems, (3) I might not get another chance, (4) I desire shared decision-making but feel powerless to contribute, (4a) I need more information about my health status, prognosis and the transplant process, and (4b) I need more information about donor risk factors.

Conclusion: Waitlist patients desired information and involvement in decision-making, yet individual prognoses were not fully understood. Integrating shared decision-making from pre- to post-offer will increase knowledge and enhance treatment satisfaction.