Increasing Access to Living Donor Kidney Transplantation: A Program Report

Abstract

French

Purpose of Program:

The best treatment option for most patients with kidney failure is a transplant from a living kidney donor, yet multiple barriers prevent most patients from receiving one. The Living Donor Kidney Transplantation project within the Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) Network aims to improve access to living donor kidney transplantation across Ontario and beyond by enhancing our understanding of the living kidney donor and kidney transplant processes and by implementing and evaluating patient-informed, evidence-based solutions.

Sources of Information:

To achieve our goal of improving access to living donor kidney transplantation, our research draws on multiple sources, including (1) insights from patients, health care professionals, provincial and national kidney agencies, and researchers; (2) Ontario’s administrative health care databases; (3) clinical trials; and (4) qualitative methodology (surveys, interviews, consensus meetings, Delphi process).

Methods:

Our research activities in Phase 2 (2022-2026) focus on four key projects:

(1) High-quality living kidney donor evaluation: A national consensus conference to define a high-quality living kidney donor evaluation and associated metrics.

(2) One-day donor assessment clinic: A streamlined donor evaluation clinic to improve the efficiency of the living kidney donor evaluation.

(3) Transplant Ambassador Program: A peer-support program led by patient volunteers to support patients with kidney failure and living kidney donors.

(4) Collaboration and equitable access to transplant: Collaboration with patients, health care professionals, and health system leaders to develop, implement, and evaluate solutions with a focus on equity.

Key Findings:

Engaging with patients and knowledge users at every stage of our research has enabled the creation of high-quality research, resulting in actionable change. Our work has established 35 national consensus standards for a high-quality living kidney donor evaluation, demonstrated the scalability of a one-day living kidney donor evaluation clinic, expanded a peer-support program, and developed strong system partnerships.

Limitations:

Our work has primarily focused on improving access to living donor kidney transplantation in the province of Ontario. Equitable access to living donor kidney transplants remains a challenge, which we plan to continue focusing on in future iterations of our work.

Implications:

Our work highlights the vital role of patient-oriented research and the importance of involving patient volunteers in enhancing access to living kidney donation. Together, we remain committed to creating a Canadian system where everyone who needs a living donor kidney transplant can receive one fairly and without delay.

Keywords

living donor kidney transplantation kidney failure patient partners

Introduction

In Canada, more than 50 000 patients live with kidney failure.¹ The 2 treatment options for these patients are dialysis, which is the most common treatment, and a kidney transplant.¹ Compared to dialysis, a kidney transplant often extends life expectancy by 10 years or more, at a fraction of the cost.² Over 5 years, every 100 kidney transplants saves the Canadian health care system ~$20 million in averted dialysis costs.^3,4 Compared to deceased donor kidney transplantation, living donor transplantation offers even greater benefits, with superior graft and patient survival rates.^5,6 Despite better outcomes, most transplant-eligible patients never receive a kidney transplant.⁷ There are not enough deceased donor kidneys available for transplant, and the rate of living kidney donation has remained stagnant in Canada for several years.^8,9 In addition, only one third of kidney transplants are performed using living donors.⁸ There are many barriers to receiving a living donor kidney transplant, including a lack of knowledge among patients and health care providers about living kidney donation, the difficulty patients experience in discussing living kidney donation with family and friends, and a living donor evaluation process that is long and burdensome.^10-12

Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease

Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) is a national patient-oriented research network dedicated to generating knowledge that improves kidney health for all Canadians.¹³ One key research theme of Can-SOLVE CKD is increasing access to living donor kidney transplantation. Through our Phase 1 work with Can-SOLVE CKD, we now have a better understanding of key areas in a living kidney donor (LKD) evaluation, including the duration of the evaluation, its associated costs, and the benefits of a faster evaluation.^14-17 In brief, our Phase 1 research found the following: (1) the cost of living kidney donation is an average of CAD $16 290 per donor;¹⁴ (2) one third of patients not on dialysis when their donor’s evaluation was initiated started dialysis before receiving a living donor transplant;¹⁵ (3) the median duration of a living donor evaluation was 10 months;¹⁶ (4) a more timely LKD evaluation may increase the number of kidney transplants, result in more pre-emptive transplants, and save the health care system millions of dollars;¹⁷ and (5) evaluating up to four donors simultaneously for the same recipient results in health care savings due to avoided dialysis costs and a higher chance of living donor transplantation.¹⁸

To improve access to kidney transplantation, our Phase 1 work also involved the launch and completion of a multicomponent cluster randomized clinical trial in Ontario, Canada, including over 20 000 patients with advanced CKD, the Enhance Access to Kidney Transplantation and Living Kidney Donation trial (EnAKT LKD).^19-21 In brief, EnAKT LKD involved randomizing Ontario’s 26 CKD programs to the intervention or usual care. The intervention included 4 components: (1) local quality improvement teams with administrative support; (2) transplant education resources for staff, patients and potential LKDs; (3) support to patients from kidney transplant recipients and living donors (ie, Transplant Ambassador Program [TAP], described in section “Project 3: Transplant Ambassador Program”); and (4) program-level performance monitoring with oversight by program leadership. Although the intervention ultimately did not significantly increase the rate of steps completed toward receiving a transplant, we learned several lessons that informed the team’s future research efforts to improve access to kidney transplants.^22,23 This includes approaches for co-design, clinician networks, multi-format education, pathway monitoring, and learning health system evaluation. The initiative also resulted in the development and successful launch of the Transplant Ambassador Program (TAP, https:/transplantambassadors.ca/), a patient-led initiative that connects patients who are considering living kidney donation or kidney transplantation with people who have successfully received a kidney transplant or donated a kidney.^24,25

“Far too often, patients with kidney disease simply do not understand the benefits of living kidney donation—the chance for a pre-emptive transplant, longer survival rate, and longevity of the kidney, and the opportunity to avoid the long, difficult wait on the deceased kidney donor list. Even for patients who do understand the benefits, the barriers to living donation are numerous, complex, and personal. This study has recognized from the beginning that patients and donors are true experts when it comes to identifying the barriers to living donor transplant and how they overcame them. It has been demonstrated clearly that patients and donors are deeply passionate about supporting and sharing their knowledge with others. Engaging with us from the beginning, giving us opportunities to improve, enhance, lead, and change the course of the study have all been key to the study’s success and to keeping so many patients and donors engaged to this day.”—Susan McKenzie, TAP Ambassador and Co-Founder

Building on the successes and lessons from Phase 1, Phase 2 of our work (2022-2026) focuses on mobilizing these research findings to achieve more living donor kidney transplants in Canada. Specifically, our Phase 2 work focuses on the following projects:

Defining a high-quality LKD evaluation and selecting metrics for a high-quality evaluation.

Improving the efficiency of LKD evaluations through innovations like the one-day living donor assessment clinic.

Expanding our patient peer-support program (TAP) to support more patients with kidney failure and potential LKDs.

Increasing access to kidney transplantation, through collaboration with patients, health care professionals, and health system leaders, with a focus on equity.

The sections below provide an overview of each project, key findings, and next steps. A detailed description of the status of each project on the Can-SOLVE CKD Implementation Pathway²⁶ (Figure 1) is also provided.

Figure 1.

Can-SOLVE CKD pathway to implementation.

Project 1: High-Quality Living Kidney Donor Evaluation

Overview

Living kidney donor programs are seeking ways to strengthen the donor evaluation process,^11,27,28 which is frequently described as inefficient, lengthy, and lacking patient-centeredness.^15,11,29,30 However, there is little guidance on what defines a high-quality evaluation and on metrics to evaluate performance. To address this gap, in September 2024, we convened a national consensus conference to establish standards for a high-quality LKD evaluation and to develop performance metrics that support benchmarking and quality improvement efforts across Canada. This initiative was highly collaborative, with a multi-provincial steering committee organizing four working groups to review evidence, conduct surveys, and gather input from donors, clinicians, administrators, and policy leaders. More than 100 individuals participated in the conference, including patients, nurses, nephrologists, surgeons, researchers, and representatives from provincial and national transplant organizations. During the one-day virtual conference, participants reviewed evidence summaries and donor testimonies before voting on each recommendation. Consensus was defined a priori as ≥75% agreement (“agree” or “strongly agree”), and the quality of evidence was rated using the GRADE framework.^31,32

Key Findings

Preparatory work conducted by the working groups revealed substantial variability in how LKD evaluations are performed across Canada, a high donor burden, and gaps in reimbursement and emotional support. Through an e-Delphi process, 35 recommendations achieved consensus, which we grouped into four categories: (1) improving the efficiency of the donor evaluation (eg, reducing time to complete the donor evaluation); (2) improving resources and reimbursement (eg, strengthening donor reimbursement programs); (3) ensuring the evaluation is donor-centered (eg, metrics to measure donor satisfaction); and (4) promoting standardization and evidence-based practice (eg, ensuring tests required to complete the donor evaluation are based on evidence).

Next Steps

The recommendations for a high-quality LKD evaluation provide guidance to ensure the evaluation is consistent, transparent, and supportive and informs metrics to measure the LKD evaluation process, supporting quality improvement initiatives. Recommendations complement and extend existing guidelines³³ by providing recommendations that focus specifically on a high-quality LKD evaluation from the perspective of multiple individuals, including LKDs, and help provide a national framework for programs to standardize and monitor evaluation processes, ultimately aiming to reduce delays, improve equity, and make donation a more supportive and transparent experience for all donors. We are now collaborating with our partners to establish an implementation team (Phase 3 of the implementation pathway, Figure 1) to act on the recommendations.

Project 2: One-Day Living Kidney Donor Assessment Clinic

Overview

An inefficient evaluation process is a barrier to living kidney donation in Canada, with candidates often undergoing more than 30 tests and specialist consultations across multiple visits. The median evaluation time in Ontario approaches 1 year,¹⁵ delaying access to transplantation and sometimes leading recipients to require dialysis before donation. Therefore, in January 2019, we developed and launched a one-day LKD assessment clinic in Hamilton, Ontario, enabling donor candidates to complete most of the required testing and consultations in a single day.

Key Findings

Since its launch in 2019 at St. Joseph’s Hamilton Healthcare, the 1-day LKD assessment clinic has evaluated more than 150 donor candidates, with 98% reporting very high satisfaction and citing reduced burden and minimal disruption to work and family responsibilities.¹¹ The clinic has also now been adopted at London Health Sciences Centre and The Ottawa Hospital, covering three of Ontario’s six adult transplant centers, demonstrating the feasibility and scalability of this patient-centered quality improvement initiative. At The Ottawa Hospital, the program was formally evaluated through a qualitative study of 18 donor candidates and 13 individuals who assisted in implementing the one-day clinic (eg, nephrologists, nurses).²⁷ The qualitative study found that the one-day clinic was time- and cost-effective, with reduced travel and work disruption, and an accelerated determination of donor suitability.²⁷ It was also noted that the one-day clinic streamlined processes and increased collaboration.²⁷ However, it is important to note potential barriers to implementation of a one-day donor clinic across Canada, such as the institutional support to coordinate multiple resources across different hospital departments (eg, radiology, nephrology, and surgery).²⁷

Next Steps

Our research team is currently conducting a quantitative evaluation comparing one-day clinic participants at St. Joseph’s Hamilton Healthcare to individuals in the usual care pathway in terms of outcomes, such as time to complete the donor evaluation. To complement this, and in our pursuit of addressing barriers experienced by equity-deserving groups, we are conducting qualitative interviews with donor candidates from multicultural backgrounds and clinic staff to identify the barriers and enablers they encountered during the living donor evaluation process. This work will inform further process improvements and advocacy for the scale and spread of the one-day clinic to provide a more patient-centered and equitable experience for patients. We are currently in the stage 5 (implementation, monitoring, and evaluation) phase of the evaluation pathway and the sustainability phase (stage 6) (Figure 1), as we aim to have more living donor programs in Ontario and throughout Canada implement the one-day clinic.

“I will never forget the one-day donor clinic at St. Joseph’s. I started that summer day in early August with some hesitation . . . medical tests are not my forte. I went through back-to-back tests—they seem a blur now. I recall being amazed at the planning that had been in place to make this happen. The time saving was a major plus; both my wife and sister-in-law had gone through the normal screening, so the contrast was palpable. There is no question that the time saved is the biggest plus for prospective donors, yet there are other benefits. I was treated like royalty; the staff were compassionate and supportive. Toward the end of this long day, I noticed some intense exchanges among some specialists who were looking at a computer monitor . . . I was shown some images, and they were excited to confirm that my left kidney was ideal for transplantation. In that moment, I realized that I was very likely going to be a donor, all in one day, like passing an exam you didn’t study for. How can you ever forget that!”—Living kidney donor who participated in the one-day donor clinic

Project 3: Transplant Ambassador Program

Overview

A significant part of Phase 1 of our Can-SOLVE CKD Project was the development of TAP. Transplant ambassadors are either LKDs or transplant recipients who have undergone a successful kidney transplant. They share their lived experiences with patients who have kidney failure and demonstrate how kidney transplants can restore patients’ health. Patients can connect virtually with transplant ambassadors or in-person at chronic kidney disease clinics or dialysis centers.

“Having had the privilege of in-person and virtual meetings with patients who often are confused, unaware of basic matters in relation to their health, oblivious to the process and options; [it] is disheartening and demonstrative of what’s wrong with the kidney transplant system. The Transplant Ambassador Program forms connections with patients to fill in the missing gaps, giving them the tools needed for a successful outcome. These things matter to patients and TAP is a reliable partner for them. The benefit to patients can be measured by the joy of their families, the self-respect felt by a patient returning to work and enjoying life to the fullest.”—Transplant Ambassador

Key Findings

Since its implementation in 2017, TAP has expanded to operate across Ontario and Atlantic Canada, with over 200 transplant ambassadors, resulting in more than 10 000 conversations with patients. Several patients who interacted with transplant ambassadors before their transplant have gone on to become transplant ambassadors themselves after receiving their kidney transplant, underscoring the value patients have found in the services provided by these ambassadors.

Many ambassadors also support our Can-SOLVE CKD project’s knowledge mobilization by disseminating results through our social media platforms and through their regular interactions with patients and health care professionals. This growing network of over 200 recipients and donors is also helpful in supporting the diverse recruitment of patient partners to collaborate on research projects. TAP has also played an active role in advocating for policymakers in Ontario for improved access to kidney transplantation.

Next Steps

We are now working to expand TAP throughout Canada and enhance the services that TAP provides (eg, support helping patients navigate the transplant process). We are currently in Stage 6 (Sustainability and Adaptations) on the implementation pathway (Figure 1). One major barrier we have encountered while trying to expand TAP is the need for a dedicated TAP champion (eg, a health care professional) at the hospital to help make patient referrals to transplant ambassadors. Some hospitals have experienced a lower volume of referrals in the absence of a dedicated TAP champion, leading to some ambassadors disengaging from the program due to limited activity.

Project 4: Collaborating to Increase Equitable Access to Kidney Transplant

Overview

Our multicomponent intervention, conducted in Phase 1 of Can-SOLVE CKD, did not substantially increase access to kidney transplantation, highlighting the difficulty of growing kidney transplant rates in busy and resource-constrained health care environments.²² To help inform our next steps, we conducted a process evaluation to assist with interpreting our findings.²³

Given that we know access to kidney care is not equitable in the province, our Phase 2 work also aims to understand geographic barriers to kidney transplantation.³⁴ There are only six transplant centers in Ontario, with most patients in Northern Ontario often required to travel multiple times to Toronto or London for their transplant (>400 km). We aimed to quantitatively determine whether patients’ residence affects their likelihood of receiving a kidney transplant.

Key Findings

Surveys and semi-structured interviews with health care providers revealed that barriers to increasing transplants included the need for additional resources and more comprehensive transplant education for frontline staff.²³ These results are guiding our future strategies to improve access to kidney transplants.

We found substantial variation in access to kidney transplants across the province, with patients living in Northern Ontario having a significantly lower rate of kidney transplants compared to patients living in the rest of Ontario. For example, the rate of kidney transplants in Northern Ontario for patients receiving maintenance dialysis was 10.0 per 100 person-years compared to 28.7 in Toronto (almost a three-fold difference).³⁵

Next Steps

We are continuing to collaborate with the Ontario Renal Network (ORN) and Trillium Gift of Life Network-Ontario Health to understand the barriers to accessing kidney transplants from the perspectives of patients and frontline staff and to co-design potential solutions. One of our Can-SOLVE CKD project team leads is the ORN’s Provincial Medical Lead for Access to Kidney Transplant, which enables us to employ an integrated knowledge translation approach to ensure findings are relevant and reach the intended audience. We are currently in Stage 3 (establishing the implementation team) (Figure 1).

Discussion

With the support of Can-SOLVE CKD, our research group has implemented and evaluated several initiatives to enhance access to kidney transplantation, with a particular focus on living kidney donation. Building on our Phase 1 work which focused on understanding the living donor evaluation (eg, how much it costs) and strategies to increase access to kidney transplantation, our Phase 2 work focused on mobilizing these findings to achieve more LKD transplants by (1) gaining consensus from partners across Canada on what a high-quality living donor evaluation looks like, including establishing metrics to monitor the evaluation; (2) implementing and scaling a solution to make the living donor evaluation more efficient (ie, one-day donor clinic); (3) scaling and spreading our patient-led TAP, across Ontario, and to Atlantic Canada; and (4) continuing to work with partners iteratively to improve access to kidney transplant.

Key Learnings

Throughout our research journey to improve access to kidney transplants, several key enablers have contributed to our success. First, at the heart of the Can-SOLVE CKD network are patients, and it has been grounded on the principle that collaboration with patient partners is essential for high-quality research that will ultimately improve patient outcomes. We have learned that involving patients at all steps in the implementation pathway is necessary for creating a high-quality research project. Second, engaging with patient partners and collaborating with knowledge users, such as provincial and national kidney organizations, at every step in the implementation pathway has helped ensure that our projects are relevant and that the results of our research are effectively mobilized into the health care system. Third, we learned that the path to improving access to transplant is a nonlinear, iterative process, for which we need to be prepared to adapt our research to meet the priorities of our patients and knowledge users.

Despite these enablers, several barriers have hindered the implementation of our research. First, since health care is managed at the provincial level, rather than the national level, scaling and spreading our research to provinces outside of Ontario has been a challenge. It takes time to develop relationships nationwide and to understand the various barriers and logistical challenges associated with implementing different initiatives across the country. Second, barriers to kidney transplants and living kidney donation are multifaceted and present at the patient, provider, CKD program, transplant center, and health system levels. Therefore, solutions require collaboration and buy-in across all levels. Finally, we know that not all patients have an equal chance of receiving a kidney transplant. While many equity dimensions need to be addressed to improve transplant access, we have chosen to start with geography; however, we recognize that numerous other dimensions also require attention.

Conclusion

Our Can-SOLVE CKD work continues to test, implement, and disseminate initiatives aimed at improving access to living donor kidney transplantation across Canada. Through our continued efforts and the support of hundreds of patient partners, we strive to create a system where every Canadian who needs and wants a kidney transplant can access it in a timely and equitable manner.

Footnotes

Acknowledgements

We thank the Executive Committee of Can-SOLVE CKD (Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease), a patient-orientated research network to transform the care of people affected by kidney disease (). We would like to thank the more than 200 transplant ambassadors that have volunteered their time to support patients with kidney failure. Dr Naylor is supported by a Health System Impact Embedded Early Career Researcher Award from the Canadian Institutes of Health Research. Dr Garg was supported by the Kay Family Chair in Transformational Kidney Care.

ORCID iDs

Kyla L. Naylor

Seychelle Yohanna

Natalie M. Zitoun

Amit X. Garg

Consent for Publication

Consent for publication was obtained from all authors.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work is a project of the Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) Network, funded by the Canadian Institutes of Health Research (CIHR). The analyses, conclusions, opinions, and statements expressed herein are solely those of the authors and do not reflect those of the funding source.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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