Living donor kidney transplantation: preferences and concerns amongst patients waiting for transplantation in New Zealand

Abstract

Objectives

There are multiple barriers to kidney transplantation from a living donor for patients. A critical factor is their own approach to pursuing opportunities for transplantation, including their preferences for living or deceased donation and their concerns about living donation. As part of a wider study into barriers to living donor transplantation in New Zealand, our aim was to examine the preferences and concerns of New Zealand patients who are waiting for kidney transplantation.

Methods

Mixed methods were used, incorporating a mailed survey of patients on the waiting list for a deceased donor transplant, followed by in-depth semi-structured interviews. The survey included questions about preferences for living or deceased donation, willingness to accept a kidney from a potential donor if offered and concerns about aspects of living donation. Responses were received from 193 (38.2%) patients. These issues were explored in more depth in follow-up interviews with 17 patients.

Results

The majority of patients were positive about living donor transplantation with only a few actively preferring a deceased donor. The vast majority would accept an offer from a potential donor. Donors being financially out-of-pocket and being upset if the transplant failed were the highest ranked concerns. Impacts on donor health were also a significant concern for patients. Positive views about living donor transplantation and stated willingness to accept offers could be undermined by deep, unresolved concerns and could result in patients declining offers from potential donors. Being well-informed about the risks to donors and having confidence in the donor evaluation process were important for reducing patients’ concerns.

Conclusions

The preferences and concerns of patients in New Zealand are similar to those reported elsewhere. Education needs to address the concerns of patients and ensure they have accurate knowledge about living donation. Concerns about financial impacts on donors, however, arise from New Zealand’s policy of not fully reimbursing living donors for lost income and cannot be addressed through improved education.

Keywords

health policy living donor kidney transplantation renal services

Introduction

For most people with end-stage renal failure, transplantation is the most effective form of renal replacement therapy, offering greater life expectancy¹ and better quality of life² than dialysis as well as being more cost-effective.³ Transplantation is possible from either a living or deceased donor, with transplantation from a living donor now widely regarded as the preferred treatment for most people with end-stage renal failure.⁴

However, internationally, there is a significant and growing gap between the number of people who would benefit from transplantation and the number who receive one. Failure to increase transplant rates results in unnecessary loss of life, significant public expenditure on an inferior therapy (dialysis) and a thriving organ trafficking trade.⁵

In New Zealand, as elsewhere, there are increasing numbers of people on dialysis (2381 in 2011)⁶ and a growing waiting list for a deceased donor transplant (nearly 700 people in 2011).⁷ However, only 108 renal transplants were performed in 2012, half from living donors.⁸

How to increase the rate of living donor kidney transplantation is a complex problem with numerous barriers for patients and no easy solutions. The stages in the patient journey to living donor kidney transplantation can be mapped as five stages (Figure 1) with potential barriers at each stage.⁹

Figure 1.

Stages in the patient journey to living donor kidney transplantation (LDKT).

An important feature of the living donor transplant process in many countries, including New Zealand, is that patients must be very active, particularly in terms of finding a potential donor (Stage 3) as health care professionals are often unwilling to become directly involved in donor recruitment.^9–11 A critical stage, therefore, is that patients themselves must decide that they are willing to pursue living donor transplantation, including accepting offers from potential donors (Stage 2).

Patient decision-making about pursuing transplantation is complex^12,13 and, despite the benefits of transplantation, some patients may decide not to pursue transplantation (from either a deceased or living donor)¹⁴ or may be willing to accept a transplant from a deceased donor but not from a living one.¹⁵ Previous research suggests that many patients express positive views about living donor kidney transplantation with some studies suggesting that 90% of waiting list patients (who are already willing to accept deceased donor transplant) are also willing to accept a living donor.^13,15 Furthermore, many may actively prefer a living donor to a deceased donor.¹³

However, despite these stated positive views about living donor transplantation, patients may also have a variety of concerns about it which influence how willing they are to approach potential donors about donation and/or mean that in practice they may not accept offers from potential donors.¹⁶

Concerns may include the health impacts on donors (both short- and long-term), financial burdens for donors (especially lost income during the recovery period) and fears of impacts on relationships.^{12,13,16–19} Fear of the transplant failing and how the donor would feel are also reported.¹⁶

There has been little previous research in New Zealand on living donor kidney transplantation and none which incorporates a patient perspective. As part of a survey of kidney transplant waiting list patients,⁹ patients were asked about their willingness to pursue living donor kidney transplantation, including preferences, concerns and willingness to accept offers from potential donors (Stage 2). Follow-up interviews explored their views and experiences of living donor kidney transplantation in more depth.

Background about New Zealand renal transplantation services

Renal transplantation services in New Zealand are provided only within the tax-funded public health system. Services are organized on a regional basis, clustered around the three hospitals which provide renal transplants (Northern region (Auckland Hospital), Central region (Wellington Hospital) and Southern region (Christchurch Hospital)). Donors and recipients are primarily managed within the renal service in hospitals nearest to where they are domiciled, and referred to one of the three transplanting hospitals for the transplant. Historically, each transplant unit has decided on its own criteria and protocols, although in practice there are relatively few differences on key matters such as criteria for accepting donors. Direct costs associated with assessments, surgery and ongoing follow-up (with a small co-payment for recipients’ immunosuppressant medication) are covered by the public health system. For donors, the government provides some support towards lost income and childcare costs during the recovery period but does not fully reimburse these costs.²⁰

Methods

A mixed methods research design was used. A postal survey of all patients over the age of 16 years on the waiting list for a deceased donor transplant in New Zealand as of October 2011 was carried out. Those on the waiting list are by definition also eligible for a living donor transplant as they have all been assessed as suitable for transplantation. Others amongst the total dialysis population may also be suitable for a living donor transplant but not meet the criteria for a deceased donor transplant (the scarcity of deceased organ donors means access is frequently rationed).²¹ However, surveying this wider group would have encompassed patients who were clinically unsuitable for transplantation or who did not want a transplant of any kind, and was therefore considered inappropriate.

Questions were based around the stages of the patient journey described above and included questions about transplant preferences, including preferences for a kidney from a living compared to deceased donor and patients’ willingness to accept offers from potential living donors. Patients also ranked potential concerns about living donor kidney transplantation. Preferences were assessed by two questions. Patients were asked firstly to indicate on a five-point scale whether they agreed with the statement ‘I would prefer a live donor to a deceased donor’, and secondly ‘I would be willing to accept a live donor kidney if offered’. Patients were then asked to indicate on a five-point scale how concerned they were about different aspects of living donor kidney transplantation (impacts on donor’s health, donor having a painful recovery from surgery, donors being financially out-of-pocket and the donor being upset if the transplant failed (was rejected)).

Completed questionnaires were received from 193 patients, from 505 distributed (38.2% response rate). Respondents were reasonably representative (Table 1), although Māori and Pacific patients were slightly underrepresented (with Māori making up 17.6% of the waiting list but 13.5% of survey respondents; and patients of Pacific Island origin making up 18% of the waiting list but 15.5% of survey respondents).

Table 1.

Characteristics of survey respondents (n=193) and of the kidney transplant waiting list population.

Survey respondents, n (%)	Total waiting list, n (%)
Region
Northern	111 (58.4)	302 (59.8)
Central	56 (29.5)	161 (31.9)
Southern	23 (12.1)	42 (8.3)
Total	190 (100)	505 (100)
Gender
Male	104 (54.5)	288 (56.5)
Female	87 (45.5)	222 (43.5)
Total	191 (100)	510 (100)
Ethnicity
Pākehā/NZ European	111 (57.8)	234 (45.9)
NZ Māori	26 (13.5)	90 (17.6)
Pacific	30 (15.5)	92 (18.0)
Asian	11 (5.7)	37 (7.25)
Indian	9 (4.7)	21 (4.1)
Other	5 (2.6)	36 (7.1)
Total	192 (100)	510 (100)
Partner/Spouse
No	56 (29.0)
Yes	130 (67.4)
Total	186 (100)
Previous kidney transplant
No	156 (81.3)
Yes, living donor	15 (7.8)
Yes, deceased donor	21 (10.9)
Total	192 (100)

Of the respondents, 138 indicated they would be willing to participate in a follow-up interview. Purposive sampling was used to select patients for face-to-face, semi-structured, in-depth interviews. Respondents were first sorted by region in order to give a geographical spread with a mix of male and female respondents and then further sorted by donor recruitment activity (no discussion, discussed but not asked, discussed and asked). Emphasis was also given to recruiting Māori and Pacific patients, given overrepresentation of these groups amongst those with end-stage renal failure.²²

Interviews covered a range of issues about patients’ experiences of dialysis and transplant, including their preferences for living donor transplantation, concerns about living donation and experiences of receiving and accepting offers from potential donors. Interviewing continued until saturation was reached (no new themes emerged) with 17 patients interviewed (eight male, nine female; four Māori, four Pacific and nine New Zealand European).

Questionnaires were distributed by transplant coordinators in each transplant unit and returned directly to the researcher, thus maintaining patient confidentiality. SPSS was used to analyse survey data, with results of chi-square analysis being deemed significant at p < 0.05. Interviews were taped and analysed using NVivo to identify themes and sub-themes relating to the stages in the patient journey, with inductive analysis identifying new themes emerging from the interviews.²³

Ethical approval for the research was granted by the Health and Disability Multi Region Ethics Committee (ref MEC 11/05/048).

Results

Preferences

There were positive attitudes towards living donor kidney transplantation. The majority (85%) said they would accept a living donor kidney if offered. One-third (34%) actively preferred living donor kidney transplantation to deceased donor transplant, while only 12.7% said they would prefer a deceased donor (Table 2). There were no statistically significant differences in preferences by age, sex, ethnicity, having a partner, time on dialysis or having had a previous transplant. A significant difference was found between the three geographical regions: 52.2% of patients in one region said they would actively prefer a living donor transplant over a deceased donor, compared to 36.7% and 20% in the other regions (p = 0.044).

Table 2.

Patient preferences and willingness to accept a kidney if offered, n (%).

Strongly disagree (1)	Disagree (2)	Neutral (3)	Agree (4)	Strongly agree (5)
Prefer live donor to deceased donor transplant (n = 190)	10 (5.3)	14 (7.4)	101 (53.2)	29 (15.3)	36 (18.9)
Willing to accept a live donor kidney if offered (n = 192)	10 (5.2)	3 (1.6)	15 (7.8)	51 (26.6)	113 (58.9)

Most people, however, were neutral on the question of where their transplant came from, with a typical comment being:

I would be happy to accept a kidney from anyone, dead or alive; as long as it gets me off dialysis, I’ll be very happy.

Interviews with patients suggested that for many, the decision to pursue transplantation once told they were approaching end-stage renal failure was a straightforward one. For others, this had been a more difficult decision with some people saying that initially they had been reluctant to consider transplantation, from either a deceased or living donor. Two people had refused, for example, because they did not like the idea of a transplant from a deceased person or simply because they were overwhelmed with the diagnosis of end-stage renal failure and coping with dialysis, and could not also cope with the requirements of recipient transplant evaluation. In those cases, family or friends with prior experience of end-stage renal failure had persuaded them to reconsider:

The specialist said to me, “If a kidney comes and it’s one from a dead person, would you take it?” First of all, I said, nah, because, you know … . But then talking to [my friends] they said, “Oh no, mate, grab a kidney as soon as it comes, say yes.” So that changed everything around. I didn’t really listen to other people, but when I saw that fella [who’d had a transplant], I looked at him and said, “How long you had your kidney?” He said, “Eight years,” and he’s still going so that made me think again.

Preferences also changed as people spent time on dialysis and realized what life on dialysis was like. In regards to living donor transplantation, several people commented that they had turned down offers from potential living donors early on which they now wished they had accepted, or that they would accept offers now that they might previously have declined:

If someone offers, I’d certainly run with it, especially after being on dialysis for the time I’ve been on now … . At the time I wouldn’t take one off that person because they’re a pain in the arse, but it’s got to the stage now where there was that discussion [in the media] about the paedophile or some guy that wanted to donate. Someone asked me, “Would you take it?” In a flash, yeah. They said, “Oh wouldn’t you feel …?” I said, “You haven’t been on dialysis for day after day, month after month, year after year. Because if you had, you wouldn’t think twice.”

Concerns

Patients ranked a donor’s loss of income and a donor being upset if the transplant failed as their highest concerns, with the lowest level of concern being about the donor having a painful recovery (Table 3). The average rating for this item was significantly lower than all the other items, which were not significantly different from each other.

Table 3.

Patient rankings of concerns about living donor kidney transplantation, n (%).

Strongly disagree (1)	Disagree (2)	Neutral (3)	Agree (4)	Strongly agree (5)	Mean (SD)
Donor health problems (n = 189)	16 (8.5)	28 (14.8)	36 (19.0)	72 (38.1)	37 (19.2)	3.46 (1.205)
Painful donor recovery (n = 188)	9 (4.8)	35 (18.6)	63 (33.5)	62 (33.0)	19 (9.8)	3.25 (1.027)
Loss of donor income (n=189)	6 (3.2)	22 (11.6)	45 (23.8)	73 (38.6)	43 (22.8)	3.66 (1.053)
Donor upset if transplant rejected (n=189)	8 (4.2)	17 (9.0)	49 (25.9)	72 (38.1)	43 (22.8)	3.66 (1.058)

The main concerns that emerged during the interviews were consistent with these rankings, with key themes relating to health and financial impacts on donors. Fear of the transplant being rejected and how donors would feel was mentioned by only a few people although around three-fifths of survey respondents agreed or strongly agreed that this was a concern for them. Issues relating to relationships with donors also emerged.

Some people had general concerns about the safety of living donor transplantation for donors:

I’m worried about them … . I guess the one kidney does the function of the two kidneys but with not the same power sort of thing, not the same strength, I mean … . I guess it’s getting my head around that, that they will be fine. I’ve got one, I’ll be ok. Will they be ok?

Often the concerns were in relation to specific people, most commonly the patient’s own adult children, who had offered:

My 30-year old son offered but I declined as I felt that he still had many years ahead of him with a young family.

A few people commented that their concerns were the ‘normal concerns anyone would have’ but said they had a good understanding of the low risks to donors. Thus, their concerns would not stop them accepting an offer:

I know that it’s probably going to go ok. There’s one in so many people that don’t make it, but that’s pretty small; and one in something will get a side effect or something but that’s pretty small. So I don’t really dwell on that. It’s all well worth going for … I mean, I’d have the usual concerns but no, my sons want to see me off dialysis and enjoying life.

For some, knowledge of the thoroughness of the donor evaluation was important. These patients said they did not have concerns about impacts on donors because they trusted that only healthy people would be accepted as donors:

The process the living donors go through really covers it. And if we get to that stage where they’re saying, “Yes”, I feel quite comfortable that things are going to progress well for both parties.

Financial concerns included not only the loss of income during the donor’s recovery but other associated costs such as transport and parking fees for donors during the work-up process. Whole families could be affected, for example, by the need for other family members to take time off work to care for donors post-transplant:

Economically, people are just existing … . So I guess that’s why I didn’t want to encroach I suppose, or ask … all of that travelling, accommodation. We just don’t have the means, if you like, as a family … . yeah, I wouldn’t ask any of the family because of the economic thing. They struggle even now just to keep on board with normal living.

A few people mentioned aspects of relationships such as feeling obligated to donors because donation was a ‘big thing’ that could never be reciprocated. Sometimes there was concern about a particular person who had offered, for example, because of a fear they might ask for something in return:

I just know that it means they’re kind of connected to me now, and I don’t want that … physically I would want them … but just the whole shebang afterwards … . I just know they’ll hold me to ransom and but at that point there’d be nothing I could do.

Discussion

Most New Zealand waiting list patients report generally positive attitudes about living donor kidney transplantation and, consistent with previous research, may actively prefer living donor to deceased donor kidney transplantation¹³ and are highly likely to say they would accept an offer from a potential living donor.^13,15 Preferences did not differ by age, sex, ethnicity, having a partner, time on dialysis or having had a previous transplant. For most patients, therefore, not wanting a living donor transplant is unlikely to be a significant barrier to receiving one, and disparities in transplant rates amongst those on waiting lists (e.g. between ethnic groups) cannot be easily explained by patient preferences.

Preferences for living donor transplantation did vary by geographical location. While many patients overall were neutral about whether their transplant came from a deceased or living donor, patients in one region were more likely to actively prefer a living donor to a deceased donor. This is unlikely to be able to be explained entirely by regional differences in population characteristics given the findings that preferences did not vary by ethnicity or age. This raises the question of whether there are differences in the way services are delivered that are important, such as how living donor transplantation is discussed and promoted with patients in different renal units. This requires further exploration.

Although views about living donor transplantation were generally positive, like patients in previous studies,^{12,13,16–19} New Zealand patients also hold a range of concerns primarily relating to the impacts on donors. While they may express positive views about living donor transplantation, in practice they may have one or more concerns that prevent them approaching others about donation or feeling able to accept offers when made. These concerns may be general (can someone really live with only one kidney?) or specific to particular potential donors (e.g. adult children or those who would be significantly financially disadvantaged). The phenomenon of turning down offers is also consistent with previous research.^12,16

Preferences and concerns may be closely related to the knowledge that patients have about living donor transplantation and thus education and information may ameliorate some concerns, for example, an accurate understanding of the risks to donors, or graft (transplant) survival rates (which in New Zealand are around 95% at year 1 and 90% at year 5).²⁴ Patients may need to be sure that donors will only be accepted if risks are low and thus need to understand, and have confidence in, the donor work-up process, including that potential donors will be declined if they do not meet medical criteria.

Patient understanding of the risks and benefits of different renal replacement therapy options to themselves is also important. Previous research has found that patients with misperceptions about the risks associated with long-term dialysis and who lack understanding of the benefits to themselves of living donor transplantation are more likely to say they would be unwilling to accept a kidney if offered.¹⁹ Patients may be willing to consider living donor transplantation only when they become ‘really sick’¹⁶ or consider it a ‘last resort’.¹⁷ Murray and Conrad¹⁹ note that this suggests that patients ‘did not view themselves as currently in a life or death situation [as] in their minds being on dialysis was a successful treatment for [end-stage renal failure]’.

Fears and concerns about living donation, however, may be subjective, deeply held, based on myths and misconceptions, and represent a complex mix of medical, psychological and ethical considerations.^16,17,25 For some newly diagnosed patients in this research, the process of accepting the idea of transplantation or being able to cope with what is involved took some time. Patient views may also change over time as they come to realize what life on dialysis is like, suggesting that health professionals should not give up on talking about living donor transplantation after the initial period of starting dialysis. Patients’ own social networks may also have a significant influence in both motivating them to pursue transplantation, or alternatively to dissuade them from it.^16,26 Overall, Rodrigue et al.²⁷ note that attitudes and concerns about living donor transplantation are not homogenous, recommending that patients need both general information about the risks and benefits of both dialysis and transplantation but also opportunities for discussion about their particular concerns.

These factors are all important for health professionals to be aware of in their interactions with patients and provide challenges to effective education programmes. Professionals may assume, for example, that patients who say they would like a living donor transplantation (most people on the waiting list) do not have outstanding concerns about it. In fact, patients may have conflicting views, and strong preferences for living donor transplants can be thwarted by unresolved concerns about the impacts on donors.

It is important to note that concerns about the financial impact on donors cannot be addressed through greater patient education, as current New Zealand policy provides only partial reimbursement for lost income²⁰ and many donors will indeed be out-of-pocket as a result of donation. The extent to which financial concerns deter potential donors is unclear although there are suggestions that living donor rates have declined during the recent global recession, particularly amongst low-income people.²⁸ As well as the impact on donors, however, this research suggests it is also necessary to consider that donors being out-of-pocket acts as a barrier for patients, whose feelings of concern and guilt about donors are enough to lead them to not raise living donor transplantation with their families and/or to decline offers.

Conclusion

An effective strategy for increasing rates of living donor transplantation must incorporate a range of initiatives in both practice and policy. Understanding patients’ preferences and concerns in relation to living donation, and responding effectively, is a critical part of overcoming barriers in the living donor transplantation journey. Alongside this, policy attention is needed to such issues as reimbursement of costs associated with living donation to remove any financial barriers for donors and alleviate patients’ concerns about financial impacts on donors.

Footnotes

Funding

This work was supported by Kidney Health New Zealand (grant number 11/01).

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