Table 1.

A Summary of Comments Made During Break-Out Group Discussions on Barriers to LDKT.

Educational barriers	General lack of knowledge about living kidney donation can lead to a “fear” of the unknown. Not all donors and recipients are given the same information—there are regional and provincial inconsistencies. How do you navigate the system? Where do you go if you want to donate? Misconceptions—those receiving a living kidney donation are “jumping the queue ahead of those who are waiting for a deceased organ.” Too many sources of information, sometimes contradictory and very overwhelming—this leads to the creation of “urban myths” and people cannot decipher this from credible information. Lack of information for donors and a gap in long-term follow-up for donors. “Everyone knows about cancer,” but this is not the case with kidney disease. The public understands the need to donate blood, but do not generally know about the importance of living organ (kidney) donation.
Financial barriers	Potential loss of income for donors who need to take time off work to go through multiple tests as well as recovery time after surgery. Associated costs with donor testing and surgery can include parking, mileage, child care, accommodation, travel, new diets, vitamins, and so forth. Post-discharge medications can be expensive if the donor does not have benefits. Existing reimbursement programs are inadequate to cover the true costs of donation.
System-level barriers	Donor candidate evaluation is too long. Poor/delayed communication between primary care physicians, nephrologists, dialysis staff, and transplant centres, which often leads to poor care. Not enough time to talk to patients about transplantation. Uncoordinated approach provincially and nationally. Lack of consistency—each hospital has a different set of protocols, therefore sharing information across regions is difficult and leads to misinformation. The system is overly bureaucratic, and it is easy to fall through the cracks. Additional barriers for FNIM populations as many, particularly in rural areas, do not have access to primary care. FNIM communities receive federal health care funding, but transplantation care is organized provincially.

Note. LDKT = living donor kidney transplantation; FNIM = First Nations, Inuit and Métis.