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LONDON, ONTARIO - Living kidney donation rates have remained stagnant over the last decade, and many potential living donors find the evaluation process to be lengthy and difficult to navigate. Researchers from Lawson Health Research Institute and Western University have published results identifying indicators to monitor and improve the performance of transplant centres in how efficiently they evaluate individuals interested in becoming living kidney donors. The findings appear in the current issue of CJASN. 

In 2019, there were 219 living donor kidney transplants in Ontario. There are several advantages to kidney transplantation from a living donor compared to deceased. However, many living donor candidates drop out of the evaluation process for a variety of reasons. 

“From speaking with living donors, we know that some people find the evaluation process frustrating and cumbersome,” says Dr. Amit Garg, Professor at Western’s Schulich School of Medicine & Dentistry and Scientist at Lawson. “To ensure living donation is safe for both the donor and the recipient, a thorough evaluation is needed looking at medical, physical and psychosocial considerations.” Dr. Garg is also Director of the Living Kidney Donor Program at London Health Sciences Centre (LHSC). 

Marian Reich started the journey of living kidney donation 11 years ago, giving the gift of life to her sister-in-law, Susan. “The evaluation process took one full year to complete, and in that time Susan lost the option of a pre-emptive transplant and started dialysis. I wasn’t fully aware that I had to be the driver of the process, and how to do that.” 

Reich believes living donor evaluation should be consistent across the country, with a clearer process outlined for potential living donors and recipients. “Research studies like this one bring forth best practice and evidence-based information that includes the perspective of those with lived experiences.”

The research team, which included Patient Partners such as Reich who co-authored the paper, surveyed 77 participants who were kidney transplant recipients and recipient candidates, living kidney donors and donor candidates, or health care providers and administrators. 

Out-of-pocket cost incurred by donors is one of the most significant barriers to donation. Another challenge is the lack of reliable information about the expectations and requirements of the donation process. For example, the time commitment, nature of the testing and reasons for the tests performed. 

The evaluation process takes on average 10 months to complete, requiring multiple visits to the transplant centre. The intended recipient’s health may deteriorate during this wait to the point they may no longer receive a transplant. “By improving the efficiency of the process, more living donor candidates could complete the evaluation and more transplants performed,” adds Dr. Garg. 

The study found a diverse set of quality indicators to measure the evaluation process, focusing on efficiency and safety to improve patient outcomes. They also identified a single measure tracking the costs of living donor evaluation from a health system perspective to assist with planning and budgeting. 

“This is an important first step towards system monitoring, benchmarking and accountability in living kidney donor evaluation,” explains Dr. Steven Habbous, co-lead investigator and PhD graduate with Lawson and Western’s Schulich School of Medicine & Dentistry. “In other areas of the health care system, there are reported metrics that hospitals and funders use to compare performance between similar hospitals and track changes over time. We need to measure what we value, and value what we measure.”

The team will present the data to the Canadian National Living Kidney Donation Advisory Committee to help develop national guidelines. Potential improvement strategies are to evaluate multiple living donor candidates concurrently for the same recipient or offer some aspects of the evaluation virtually.

The study was funded by the Can-SOLVE CKD Network, a Canada-wide initiative to enhance kidney disease research and care in partnership with patients. The Ontario-based team led by Dr. Garg is one of 18 Can-SOLVE CKD research groups across the country investigating issues such as earlier diagnosis, better treatments, and innovative care – all based on priorities identified by patients.

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Dr. Amit Garg, study co-lead investigator, Professor at Western’s Schulich School of Medicine & Dentistry, and Scientist at Lawson. Dr. Garg is also Director of the Living Kidney Donor Program at LHSC.

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Dr. Steven Habbous, study co-lead investigator and PhD graduate with Lawson and Western’s Schulich School of Medicine & Dentistry

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Marian Reich, study co-author, Patient Partner and living kidney donor