In 2019, there were 219 living donor kidney transplants in Ontario, but during the past decade the rates of living kidney donations have remained stagnant. Many potential living donors report finding the evaluation process to be lengthy, costly and difficult to navigate.
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.
Researchers from Lawson Health Research Institute and Western University have published results aimed at monitoring and improving 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, and the researchers hope they will help to inform national guidelines.
“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, Scientist at Lawson and Director of the Living Kidney Donor Program at London Health Sciences Centre. “To ensure living donation is safe for the donor and the recipient, a thorough evaluation is needed looking at medical, physical and psychosocial considerations.”
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.
Eleven years ago, Marian Reich gave the give the gift of life to her sister-in-law through living kidney donation and transplant.
It took a full year to complete the donation evaluation process before having the transplant surgery.
“Unfortunately, in that time, Susan lost the option of a pre-emptive transplant and started dialysis for her kidney disease. I wasn’t fully aware that I had to be the driver of the process, and how to do that,” she said. “There was also a lot to process intellectually and emotionally. But, for me, it was a small price to pay to give someone this gift. Having a better understanding of the whole picture would have been helpful while I was going through it.”
Today, Susan is healthy with excellent kidney function.
Reich believes the process 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 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 toward system monitoring, benchmarking and accountability in living kidney donor evaluation,” explains Dr. Steven Habbous, co-lead investigator and PhD graduate from Schulich Medicine & Dentistry. “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.