Abstract
Rationale & Objective: Enhanced informed consent tools improve patient engagement. A novel visual aid measured potential donors’ risk tolerance to postdonation kidney failure and assessed if the closeness of the relationship to the intended recipient altered willingness to accept risk. Study Design: Cross-sectional analysis of donor evaluations at the time of enrollment into a longitudinal mixed-methods study between November 2014 and February 2016. Setting & Participants: Three US kidney transplant centers. English-speaking adults presenting for in-person living kidney donor evaluation. Exposure: Closeness of the relationship between the potential living donor and intended recipient. Outcome: Willingness to accept postdonation kidney failure. Analytical Approach: The Donor-Specific Risk Questionnaire, a dot matrix visual diagram, was used to measure willingness to accept kidney failure risk. Multivariable logistic regression assessed associations between risk acceptance and data from social science instruments, which measured donors’ perceived closeness with the recipient. Qualitative data were analyzed thematically per grounded theory. Results: 307 participants (response rate: 86%) completed testing. 96% indicated a willingness to accept a risk of kidney failure of 0.9% or greater. Those who were older (OR, 0.98 [95% CI, 0.96-0.99]), women (OR, 0.54 [95% CI, 0.31-0.93]), and Black (OR, 0.25 [95% CI, 0.08-0.76]) were less likely to be in the medium versus low willingness to accept risk group. Closeness of the relationship to the recipient was independently associated with greater risk acceptance (for every 1-point greater closeness score, odds ratios for being in the medium and high willingness to accept risk groups were 1.21 [95% CI, 1.03-1.41] and 2.42 [95% CI, 1.53-3.82] compared with being in the low willingness to accept risk group). With the exception of parental relationships, biological linkages were not associated with accepting higher kidney failure risk. Limitations: First demonstration of visual aid that used one risk estimate of kidney failure provided to all participants. Risk estimates were not customized to different demographic groups. Conclusions: Relationship closeness was independently associated with a greater willingness to accept postdonation kidney failure. Visual aids can provide transplant teams with individualized donor perspectives on risk thresholds and can potentially facilitate greater patient-centered care for living donors.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 246-258 |
| Number of pages | 13 |
| Journal | American Journal of Kidney Diseases |
| Volume | 78 |
| Issue number | 2 |
| DOIs | |
| State | Published - Aug 2021 |
Funding
Carrie Thiessen, MD, PhD, Jacqueline Gannon, MPH, Sienna Li, BS, Laura Skrip, PhD, Danielle Dobosz, BA, Geilang Gan, MS, Yanhong Deng, MPH, Kristie Kennedy, MA, JD, Daniel Gray, MS, Adam Mussell, MA, Peter P. Reese, MD, MSCE, Elisa J. Gordon, PhD, MPH, and Sanjay Kulkarni, MD, MHCM. Study design: CT, LS, PPR, EJG, SK; recruitment: JG, SL, DD, KK, DG, AM: data collection: CT, JG, SL, LS, DD, KK, DG, AM, SK; data analysis/interpretation: CT, JG, SL, LS, DD, GG, YD, KK, DG, AM, PPR, EJG, SK. Each author contributed important intellectual content during manuscript drafting or revision and accepts accountability for the overall work by ensuring that questions pertaining to the accuracy or integrity of any portion of the work are appropriately investigated and resolved. This work was supported by the Greenwall Foundation's Making a Difference in Real-World Bioethics grant (Sanjay Kulkarni, PI), and the Department of Surgery at Yale University funded this study. Drs Kulkarni, Gordon, and Reese received research support from the Greenwall Foundation. The funders had no role in the study design, analysis, reporting, or decision to submit the manuscript for publication. The authors declare that they have no relevant financial interests. Kevin Haninger served as a consultant for the study and helped to develop the DSRQ. Many thanks go to Joyce Albert, Tracey Jewett, Jami Hanneman, and Donna Collins for facilitating participant recruitment. Ricarda Tomlin and Cynthia Bartley spent countless hours organizing the necessary financial and grant documentation. The corresponding author will provide a de-identified dataset on request. Received June 08, 2020. Evaluated by 3 external peer reviewers, with editorial input from a Statistics/Methods Editor and an Acting Editor-in-Chief (Editorial Board Member Kerri Cavanaugh, MD, MHS). Accepted in revised form November 11, 2020. The involvement of an Acting Editor-in-Chief to handle the peer-review and decision-making processes was to comply with AJKD's procedures for potential conflicts of interest for editors, described in the Information for Authors & Journal Policies. This work was supported by the Greenwall Foundation’s Making a Difference in Real-World Bioethics grant (Sanjay Kulkarni, PI ), and the Department of Surgery at Yale University funded this study. Drs Kulkarni, Gordon, and Reese received research support from the Greenwall Foundation . The funders had no role in the study design, analysis, reporting, or decision to submit the manuscript for publication.
Keywords
- Donor evaluation
- donor-recipient relationship
- end-stage renal disease (ESRD)
- informed consent tool kidney transplantation
- living kidney donation
- medical decision making
- patient communication
- patient-centered care
- renal failure
- risk acceptance
- transplant ethics
- visual aid
ASJC Scopus subject areas
- Nephrology