IMPORTANCE: Patients with advanced chronic kidney disease (CKD) have the best chance for a longer and healthier life if they receive a kidney transplant. However, many barriers prevent patients from ...receiving a transplant. OBJECTIVES: To evaluate the effect of a multicomponent intervention designed to target several barriers that prevent eligible patients from completing key steps toward receiving a kidney transplant. DESIGN, SETTING, AND PARTICIPANTS: This pragmatic, 2-arm, parallel-group, open-label, registry-based, superiority, cluster randomized clinical trial included all 26 CKD programs in Ontario, Canada, from November 1, 2017, to December 31, 2021. These programs provide care for patients with advanced CKD (patients approaching the need for dialysis or receiving maintenance dialysis). INTERVENTIONS: Using stratified, covariate-constrained randomization, allocation of the CKD programs at a 1:1 ratio was used to compare the multicomponent intervention vs usual care for 4.2 years. The intervention had 4 main components, (1) administrative support to establish local quality improvement teams; (2) transplant educational resources; (3) an initiative for transplant recipients and living donors to share stories and experiences; and (4) program-level performance reports and oversight by administrative leaders. MAIN OUTCOMES AND MEASURES: The primary outcome was the rate of steps completed toward receiving a kidney transplant. Each patient could complete up to 4 steps: step 1, referred to a transplant center for evaluation; step 2, had a potential living donor contact a transplant center for evaluation; step 3, added to the deceased donor waitlist; and step 4, received a transplant from a living or deceased donor. RESULTS: The 26 CKD programs (13 intervention, 13 usual care) during the trial period included 20 375 potentially transplant-eligible patients with advanced CKD (intervention group n = 9780 patients, usual-care group n = 10 595 patients). Despite evidence of intervention uptake, the step completion rate did not significantly differ between the intervention vs usual-care groups: 5334 vs 5638 steps; 24.8 vs 24.1 steps per 100 patient-years; adjusted hazard ratio, 1.00 (95% CI, 0.87-1.15). CONCLUSIONS AND RELEVANCE: This novel multicomponent intervention did not significantly increase the rate of completed steps toward receiving a kidney transplant. Improving access to transplantation remains a global priority that requires substantial effort. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT03329521
Purpose of Review:
To hear from living kidney donors and recipients about what they perceive are the barriers to living donor kidney transplantation, and how patients can develop and lead innovative ...solutions to increase the rate and enhance the experiences of living donor kidney transplantation in Ontario.
Sources of Information:
A one-day patient-led workshop on March 10th, 2016 in Toronto, Ontario.
Methods:
Participants who were previously engaged in priority-setting exercises were invited to the meeting by patient lead, Sue McKenzie. This included primarily past kidney donors, kidney transplant recipients, as well as researchers, and representatives from renal and transplant health care organizations across Ontario.
Key Findings:
Four main barriers were identified: lack of education for patients and families, lack of public awareness about living donor kidney transplantation, financial costs incurred by donors, and health care system-level inefficiencies. Several novel solutions were proposed, including the development of a peer network to support and educate patients and families with kidney failure to pursue living donor kidney transplantation; consistent reimbursement policies to cover donors’ out-of-pocket expenses; and partnering with the paramedical and insurance industry to improve the efficiency of the donor and recipient evaluation process.
Limitations:
While there was a diversity of experience in the room from both donors and recipients, it does not provide a complete picture of the living kidney donation process for all Ontario donors and recipients. The discussion was provincially focused, and as such, some of the solutions suggested may already be in practice or unfeasible in other provinces.
Implications:
The creation of a patient-led provincial council was suggested as an important next step to advance the development and implementation of solutions to overcome patient-identified barriers to living donor kidney transplantation.
Background:
Many working-age individuals with advanced chronic kidney disease (CKD) are unable to work, or are only able to work at a reduced capacity and/or with a reduction in time at work, and ...receive disability payments, either from the Canadian government or from private insurers, but the magnitude of those payments is unknown.
Objective:
The objective of this study was to estimate Canada Pension Plan Disability Benefit and private disability insurance benefits paid to Canadians with advanced kidney failure, and how feasible improvements in prevention, identification, and early treatment of CKD and increased use of kidney transplantation might mitigate those costs.
Design:
This study used an analytical model combining Canadian data from various sources.
Setting and Patients:
This study included all patients with advanced CKD in Canada, including those with estimated glomerular filtration rate (eGFR) <30 mL/min/m2 and those on dialysis.
Measurements:
We combined disability estimates from a provincial kidney care program with the prevalence of advanced CKD and estimated disability payments from the Canada Pension Plan and private insurance plans to estimate overall disability benefit payments for Canadians with advanced CKD.
Results:
We estimate that Canadians with advanced kidney failure are receiving disability benefit payments of at least Can$217 million annually. These estimates are sensitive to the proportion of individuals with advanced kidney disease who are unable to work, and plausible variation in this estimate could mean patients with advanced kidney disease are receiving up to Can$260 million per year. Feasible strategies to reduce the proportion of individuals with advanced kidney disease, either through prevention, delay or reduction in severity, or increasing the rate of transplantation, could result in reductions in the cost of Canada Pension Plan and private disability insurance payments by Can$13.8 million per year within 5 years.
Limitations:
This study does not estimate how CKD prevention or increasing the rate of kidney transplantation might influence health care cost savings more broadly, and does not include the cost to provincial governments for programs that provide income for individuals without private insurance and who do not qualify for Canada Pension Plan disability payments.
Conclusions:
Private disability insurance providers and federal government programs incur high costs related to individuals with advanced kidney failure, highlighting the significance of kidney disease not only to patients, and their families, but also to these other important stakeholders. Improvements in care of individuals with kidney disease could reduce these costs.
Kidney transplantation gives many patients with kidney failure a longer and healthier life. Unfortunately, some transplant-eligible patients will never receive one. In this paper, we describe how ...patients and researchers collaborated on new strategies and programs to enhance access to kidney transplantation and living kidney donation. These efforts led to the creation of the Transplant Ambassador Program (TAP). TAP is a patient-led program that helps connect patients who have kidney failure to individuals who have successfully received a kidney transplant or donated a kidney. We also detail barriers, facilitators and lessons learned from engaging patients in research.
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