What happens to patients waiting for a kidney?

CIHI is part of a study looking at the quality of pre-transplant care in Canada

In Canada, we know plenty about people on dialysis and those who’ve had kidney transplants. And thanks to CIHI’s Canadian Organ Replacement Register (CORR), we even know a lot about their donors.

But what about people on the waiting list?

“What’s happening to them along the way? What proportion are dying? What proportion are being taken off the list because they’re too sick?” asks Dr. Joseph Kim, Vice President of the CORR Board of Directors and a transplant nephrologist with the Kidney Transplant Program at Toronto’s University Health Network.“ CORR has extensive information about post-transplant outcomes, but it’s the period on the waiting list that’s unclear. The pre–kidney transplant time is a bit of a black box right now.”

Although aggregate data on waiting list volumes and mortality is collected from transplant centres across the country, patient-level data is currently unavailable in CORR. Work is under way, however, to try and remedy the registry’s Achilles’ heel.

The CORR Access to Kidney Transplantation Feasibility Project is a five-year undertaking that’s collecting referral and wait list activity for kidney patients referred for transplants.

The brainchild of Dr. John Gill, past president of CORR’s board of directors, the project has seen the CORR Board partner with CIHI and 16 Canadian transplant centres to fill the information gap.

“This is about quality of care, which we don’t have a grasp of at the national level,” says Kim. “In order to know if we’re doing a good job we need to know first, if people who should be placed on the waiting list are, and among those that are listed, how many are proceeding to transplant? And how long are they waiting?”

The study’s fashioned after work that’s been done in transplant registries from the United States and the United Kingdom, where patients are tracked once they’re placed on the waiting list.

CORR, however, is going a step further and capturing data on patients even earlier—from the time they’re referred for consultation to see whether transplant is an option. 

“This is the only project of its kind happening in the world,” says Bob Williams, a CORR program lead. “Nobody knows about this gap.”

The study’s national scope also sets it apart.

Despite national guidelines around transplant eligibility published in 2005, Kim’s interested in learning the reasons some people are placed on the waiting list while others are declined.

“If there’s a lot of variability in listing practices across transplant centres, we need to understand why,” he says. “We also need to apply interventions to reduce variability where appropriate. But the only way to do that is to have patient-level data, which we don’t yet have.”

That could just be a matter of time. The project has been progressing well since it got under way in June 2010. Data collection is planned for a total of three years, with an additional two years of follow-up. By the end of this year, the team is hoping to have enough data to do some meaningful analysis.

“Ultimately, this data will go into the CORR database, so we’re trialling it to see if it produces the results we think it will,” says Claire Marie Fortin, CIHI’s manager of Clinical Registries. “If it does, it will become part of our ongoing collection in the future.”