Table 4.
Illustrative Quotes for the Themes Identified in This Study of Health Professional–Identified Barriers to Living Donor Kidney Transplantation by Province (Efforts Implemented to Alleviate Some Recognized Barriers Are Highlighted).
| Theme | Illustrative quotes |
|---|---|
| 1. Lack of communication between transplant and dialysis teams | Québec: • There’s a lot of problems with communication there. You know, the pre-dialysis clinic will send a patient for referral and kind of not hear back. (11-QC) • So we’re never sitting at a table together unless it’s about something really problematic. . . . It’s like this black box. Patient goes for transplant and there’s this whole work-up and then they get the call and we do the dialysis pre and we hope everything goes well for them but . . . we’re not really part of the process. (14-QC) Ontario: • Right now what just happens is, you know, the process goes on for six months, nine months, whatever and a letter, at the end, is issued to the potential donor and the referring nephrologist is saying they’re not eligible, you know, and the recipient never heard anything about it. (08-ON) • And we sort of know by the bye what’s going on, and we’ll see notes here and there, and investigations. And our coordinator is wonderful at keeping us up to date. . . . It’s a very cooperative process in Ontario. We have an annual transplant forum where all the transplant centres get together, then invite the community units like myself to attend. And it’s a very good process, you know. So we all know each other well and communicate with each other well. (15-ON) • Yeah, so previously I think communication was not perfect but we have been trying to inform the programs. But over the last year or so at our center there are fairly kind of specific protocols about communications, and then we are sending letters both to the patient and the transplant nephrologist and the dialysis units about wait-listing, start to send if the patient received a transplant as well. (16-ON) British Columbia: • You know, you don’t—and you’re not part of the process at all of a living donor kind of coming through and how they came through their stages. . . . We always feel like transplant is another subspecialty. (05-BC) • And so, it’s one of the things that we’ve actually identified to the coordinator in this new position is that, there has always been a disconnect communication wise and training wise between the transplant teams and the frontline home teams. (06-BC) |
| 2. Absence of referral guidelines | Québec: • Yeah. So I find the referral process a little bit disorganized . . . There isn’t no clear cut off and no clear guideline as to what needs to be done before the patient is referred. So that process right now is a little bit confusing. (11-QC) Ontario: • I think that the referring centers are getting better at identifying their patients who are heading towards end-stage kidney disease and that there’s been a real drive in the province with the Ontario Renal Network and with Trillium Gift of Life Network on improving those referral rate. (04-ON) • Yeah, so there’s a standard battery attached that has to be done on the recipient, prior to the recipient actually seeing the transplant nephrologist. I think that’s pretty standardized across the province now. This is still a work-in progress. . . . Where the lack of standardization comes in, generally, is after the recipient has seen the transplant nephrologist there’s still a fair bit of variation from transplant center to transplant center. (08-ON) British Columbia: • The work-up itself is quite daunting. (05-BC) • Admittedly it’s not a structured process. . . . So, the province here has actually, from a renal perspective, the province has actually just delegated a one year trial position for a pre-transplant coordinator. (06-BC) |
| 3. Role perception and lack of multidisciplinary involvement | Québec: • Yeah, that’s it. We, if we find that there are questions, I, among others, I communicate with the nurse of the transplant. . . . they will schedule an appointment with the nephrologist of the patient, so he meets the person, then he answers their questions. (10-QC) • You don’t discuss transplant to the same extent that like, you know, the surgeon will. . . . not to the same extent as when they go there and they meet the coordinators and they have like basically an hour talk where they describe how the whole transplant process works. (11-QC) • . . . when they see the nephrologist we encourage them to ask questions and to discuss it with them. (12-QC) • I, my role, doesn’t really involve the referral of patients for organ and tissue donation unless the patient actually happens to come to me in particular. (14-QC) Ontario: • But certainly I think academic centers are better equipped, in many cases, to have multiple levels of people who will raise this issue, so you’re not so heavily dependent on just a nephrologist saying this, you know, this patient is appropriate. (08-ON) • So multiple people. We have multidisciplinary staff in our clinic, and I think multiple disciplines will initiate the discussion. But mostly it’s the doctor, the nephrologist and then secondly the nurse. (15-ON) British Columbia: • So I certainly—it’s not my primary role to discuss transplant but it certainly comes up in conversation and I try to direct people to resources and encourage them to look for living donors. (01-BC) • I think the team approach to all of this has worked better for us and involvement of social workers has done great things for our program, and I think they’re under-recognized in their role in this and our social worker has been totally—her work has been fantastic in trying to move us forward in this way. (05-BC) • We did a two hour session yesterday and what we strategically did is we actually brought our entire team in. So, we actually had our clerk involved in the session, we had our dieticians involved in the sessions. (06-BC) • So sometimes there are differences in understanding, but the nephrologist thought they explained well enough, but patients didn’t really understand that that meant that they would be working on the transplant and in the workup and all that stuff. (13-BC) |
| 4. HP’s lack of information and training | Québec: • I think there’s just a general overall misunderstanding or lack of information on the impact of being a donor and what’s involved. (02-QC) • Well transplant was a large part of my training, but exposure to live kidney donation was minimal . . . But I think in terms of explaining the risks that’s something that the general nephrologist can do and in my experience it’s not necessarily that the risks are overestimated. It’s just that they have to be explained very carefully because there’s some nuance, you know. (11-QC) • I can’t really say that I’m 100% comfortable . . . But I can’t say I’m really equipped with different approaches or ways to bring it up to a family member or friend if you have a patient that’s looking to find a donor. (12-QC) Ontario: • Frequent discussions about the data helps we find, that if we’re continuing to see the data that people with—who’ve donated a kidney do well, you know reminders about how well they do seem to help us here in getting kind of surges of more positive discussions with patients. (05-ON) • Oh I feel very comfortable. I’ve been doing it for 30 years. I feel very comfortable. (15-ON) • Yeah, so clearly that is an issue, both living donor but transplant in general—and the Ontario Renal Network that is the government agency in Ontario who manages dialysis—did an environmental scan and needs assessment prior to 2017—it was I think between 2014 and 2016—and they identified that about two-thirds of the dialysis nurses do not feel comfortable discussing transplant-related issues, but specifically living donor-related issues with the patients. So clearly there is huge need for more discussion, more awareness, more knowledge and more comfort in terms of the frontline workers. (16-ON) British Columbia: • So it’s just re—just we can’t let it laps in-between, we have to do regular reinforcement of the data showing how much better people do with a living donor and how well donors do. (05-BC) • So, I would say that very succinctly that those have been moments where then staff struggle with; are we doing the right thing by promoting this. But those are rare situations that then you know, we have honest conversations with the nephrologist and, you know, and we have our fears, you know, explained and so we are able to move past those. We have two new staff, two new nursing staff, one with no renal background, she comes from diabetes and another who is new to renal and then new to my team. And so, of course, there is fears and anxiety for them, but simply just because they haven’t reached that point of feeling that they’ve got all the education. (06-BC). |
| 5. Negative attitudes of some health professionals toward living donor kidney transplantation | Québec: • I think that some people may think that the risks of being a donor are higher than they really are. . . . Some people I think still think that people have to be identical matches and they don’t . . . Transplantation is like another world ! . . . When we don’t know about something, it scare us. (02-QC) • And we have doctors who do not believe in transplantation, in general. Then we’re going to have a lot more trouble getting live donors to patients in those centers. . . . I think it has a lot to do with the mentality among some doctors, whether they are old school or of the new school. The new school is more . . . younger doctors are more proactive in terms of encouraging living donation. The old guard, maybe a little less. Probably due to bad knowledge about transplantation in general, whether deceased or living. (03-QC) • In general rule, I don’t really feel like there’s that much bias. I feel like usually people are quite in favour of referring patients. (11-QC) Ontario: • So, you know, there’s nobody in our group here, either physician or amongst the transplant coordinators and the nursing staff, who have any really differing opinions on the appropriateness of, you know, trying to expand the donor and recipient pool as much as possible, to really anybody who is likely to benefit from a transplant. (08-ON) • I’m a strong proponent of transplant . . . If I have the slightest thought that a patient might be a candidate in my own mind, I make the referral. (15-ON) British Columbia: • So I sometimes wonder if people are like oh, well lots of people are getting transplants now, I don’t have to worry about finding a living donor, but I know that no matter what a living donor is going to promote or provide them with the best health outcomes. So it’s still the best option for the patient. (01-BC) • I think there’s just a little bit of a shift from each of the specialties about how they perceive it, and what has been interesting for us is to make sure everybody’s getting on the same page. (05-BC) • Everybody’s really very involved and we all believe in the process so, it’s not a hard sell for us . . . Yeah. So, our nursing team 100% is fully engaged, our social worker team is 100% fully engaged and very enmeshed in it. (06-BC) |
| 6. Patient-level barriers as defined by the health professional | Québec: • Because the wait list isn’t as long on the deceased donor list maybe people aren’t feeling the pressure to look for a donor. (02-QC) • They are clumsy, they are afraid to ask their family, they are afraid, I think they are a little embarrassed. Because sometimes, we have the language barrier too . . . So, if it’s someone who just speaks Tamil, or you know a lot of others . . . There are so many communities represented here (07-QC) • There is a fantasy side of the transplant, which is the miracle cure. (10-QC) • So in my experience the risks are not overestimated when discussing it with patients . . . Yeah. Especially like when you have a young patient so maybe like less than, you know, like 50 who’s working and who had a family and who has a partner then, you know, a lot of effort is made into convincing them that live donation is better and really making an effort about talking about it around them. (11-QC) • So I think mostly it’s age and their general health are main issues. (12-QC) • So a lot of my patients think transplant equals cure. (14-QC) Ontario: • We have a very diverse patient population who are referred to us where English is not necessarily their first language, that they’re recent immigrants, there are socioeconomic factors that are playing into it, cultural beliefs, unwillingness to consider a living donor in particular some cultural groups. (04-ON) • But our patient population is increasingly heterogeneous, and it’s harder and harder to have specific, very, very specific guidelines that apply in all cases. (15-ON) • But unfortunately the resources are very scarce so it’s very difficult to provide additional support for patients who have issues with substance use, for example, or non-adherence. And so some of these patients probably will not be referred for transplant. (16-ON) British Columbia: • There seems there has been a reduction in living donors in BC that corresponds with the increase in deceased donors. (01-BC) • I think those would be the biggest ones is cost and travel and being separated from family. (05 BC) • From the patient perspective, the barrier I would say that you know, sadly the typical thing is the patient themselves is a barrier. (06-BC) • Well, there’s always some patients who don’t have any absolute contraindications, but some patients may have, what’s the word, like more psychosocial issues or compliancy issues or something like that. (13-BC) |