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Waitlisted and Transplant Patient Perspectives on Expanding Access to Deceased-Donor Kidney Transplant: A Qualitative
Canute Rosaasen1, Nicola Rosaasen2, Rahul Mainra3
1Johnson Shoyama Graduate School of Public Policy, University of Saskatchewan, Saskatoon, Canada.
Background:
A concerning number of kidneys (eg, expanded donor criteria, extended criteria, or marginal kidneys) are discarded yearly while patients experience significant morbidity and mortality on the transplant waitlist. Novel solutions are needed to solve the shortage of kidneys available for transplant. Patient perceptions regarding the use of these less than ideal kidneys remain unexplored.
Objective:
To explore the perspectives of patients who have previously received a less than ideal kidney in the past and patients awaiting transplant who could potentially benefit from one.
Design:
Qualitative description study.
Setting:
2 provinces in Canada participated (Saskatchewan and Manitoba).
Patients:
Patients with end-stage kidney disease who were awaiting kidney transplant and were either (a) aged 65 years and older, or (b) 55 years and older with other medical conditions (eg, diabetes).
Methods:
Criterion sampling was used to identify participants. Semi-structured, one-on-one interviews were conducted virtually, which explored perceived quality of life, perceptions of less than ideal kidneys, risk tolerance for accepting one, and educational needs to make such a choice. The interviews were transcribed verbatim and thematic analysis was used to analyze the data.
Results:
15 interviews were conducted with usable data (n = 10 pretransplant; n = 5 posttransplant). Participants were a mean of 65.5 ± 8.8 years old. Four interrelated themes became prominent including (1) patient awareness and understanding of their situation or context, (2) a desire for information, (3) a desire for freedom from dialysis, and (4) trust. Subthemes of transparency, clarity, standardization, and autonomy were deemed important for participant education. The majority of pretransplant participants (n = 8/10) indicated that between 3 and 5 years off of dialysis would make the risk of accepting a less than ideal kidney feel worthwhile.
Limitation:
The study setting was limited to 2 Canadian provinces, which limits the generalizability. Furthermore, the participants were homogenous in demographics such as ethnicity.
Conclusion:
These findings indicate that patients are comfortable to accept a less than ideal kidney for transplant in situations where their autonomy is respected, they are provided clear, standardized, and transparent information, and when they trust their physician. These results will be used to inform the development of a new national registry for expanding access to deceased-donor kidney transplant.
Trial Registration:
Not registered.
Insights
Patients are willing to accept marginal kidneys for transplant if their autonomy is respected and they receive clear, trustworthy information. This research aims to improve kidney transplant access by understanding patient perspectives on using less-than-ideal organs.
Area of Science:
- Nephrology
- Transplant Surgery
- Patient-Centered Care
Background:
- Many expanded donor criteria kidneys are discarded annually.
- Patients awaiting kidney transplants face significant morbidity and mortality.
- Patient perceptions of using marginal kidneys are largely unexplored.
Purpose of the Study:
- To explore patient perspectives on accepting marginal kidney allografts.
- To understand patient needs for information and autonomy in decision-making.
Main Methods:
- Qualitative descriptive study involving semi-structured interviews.
- 15 interviews conducted with pre- and post-transplant patients in Canada.
- Thematic analysis used to identify key themes.
Main Results:
- Four themes emerged: patient awareness, desire for information, freedom from dialysis, and trust.
- Transparency, clarity, standardization, and autonomy are crucial for patient education.
- Most pre-transplant patients would accept a marginal kidney if it offered 3-5 years off dialysis.
Conclusions:
- Patients are willing to accept marginal kidneys when autonomy, clear information, and physician trust are prioritized.
- Findings will inform a national registry to expand deceased-donor kidney transplant access.
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Kidney Transplant II: Surgical Procedure
Kidney Transplant III: Nursing Management
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