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Transplant Professionals’ Proposals for the Implementation of an Altruistic Unbalanced Paired Kidney Exchange Program

Durand, Céline1; Duplantie, Andrée2; Fortin, Marie-Chantal1,2,3,4

doi: 10.1097/TP.0000000000000127
Clinical and Translational Research
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Background Kidney recipients in the O blood group are at a disadvantage in kidney exchange programs (KEPs) because they can only receive an organ from O blood group donors. A way to remedy this unfair situation is through altruistic unbalanced paired kidney exchange (AUPKE) where a compatible pair (CP) consisting of an O donor and a non-O recipient is invited to participate in a KEP. There is no established AUPKE program in Canada. The aim of this study was to gather transplant professionals’ views on the conditions necessary for the implementation of an AUPKE program.

Methods Nineteen Canadian transplant professionals took part in semistructured interviews. The content of these interviews was analyzed using a qualitative data analysis method.

Results Respondents’ recommendations focused on the following: (i) the logistics of AUPKE (e.g., not delaying the transplantation for the CP, retrieving organs locally, providing a good quality organ to the CP, and maintaining anonymity); (ii) the transplantation teams (e.g., establishing a consensus among members and ensuring sufficient resources); (iii) information provided to CPs; and (iv) research (e.g., looking into all transplant options for O recipients, studying all potential impacts of KEPs and AUPKE).

Conclusion The respondents in our study made the following recommendations for the implementation of an AUPKE program: (i) CPs should not be disadvantaged, (ii) measures should be taken to ensure that all transplant team members agree to participate and that there are sufficient resources for implementation, (iii) comprehensive information should be provided to the CP, and (iv) further research is needed on AUPKE.

1 Centre de recherche du Centre hospitalier de l’Université de Montréal (CHUM), Montreal, Canada.

2 Bioethics Program, Department of Social and Preventive Medicine, École de santé publique de l’Université de Montréal, Montreal, Canada.

3 Nephrology and Transplantation Division, Centre hospitalier de l’Université de Montréal (CHUM), Montreal, Canada.

4 Address correspondence to: Marie-Chantal Fortin M.D., Ph.D., F.R.C.P.C., Nephrology and Transplantation Division, Centre Hospitalier de l’Université de Montréal, 1560 Sherbrooke Street East, Montreal, Quebec H2L 4M1, Canada.

This research was supported by an operating grant from the Canadian Institutes of Health Research.

M.-C.F. holds a KRESCENT New Investigator award and is a research scholar of the FRSQ.

The authors declare no conflicts of interest.

E-mail: marie-chantal.fortin@sympatico.ca

C.D. conducted the interviews, participated in the data analysis, and drafted the manuscript.

A.D. participated in the data analysis and reviewed the manuscript. M.-C.F. participated in the research design, data analysis, and writing of the manuscript. M.-C.F. is the principal investigator for this project.

All of the authors have read and approved the final manuscript.

Received 21 January 2014.

Accepted 20 February 2014.

Kidney exchange programs (KEPs) allow recipients with an incompatible donor to be transplanted with an organ from a donor in another incompatible pair. Blood group or immunologic incompatibilities between living donors and their intended recipients are a frequent problem in transplantation. For instance, it is estimated that around 6,000 patients on the waiting list in the United States have an incompatible living donor (1). A retrospective study conducted at the Centre hospitalier de l’Université de Montréal (CHUM) found that 41% of living kidney donors were turned down because of ABO or immunologic incompatibilities (2). KEPs are a way to increase the number of living kidney transplantations and decrease the organ shortage. In the past decade, many countries, such as the Netherlands, Romania, the United Kingdom, and Canada, have started running KEPs (3, 4).

In KEPs, O blood group recipients are at a disadvantage because they can only receive organs from O donors. The latter are universal donors and can donate to recipients in any blood group unless there is an immunologic incompatibility. A pair consisting of an O recipient and a non-O donor has a 15% chance of finding a match in a KEP, compared with a 50% chance for a pair with a non-O recipient (5). In the pool of incompatible pairs participating in KEPs, there is also a discrepancy between the number of O donors and recipients. For instance, in The Netherlands, among the 276 incompatible pairs registered in KEPs between 2004 and 2008, there were 89 O donors and 149 O recipients (6).

Some authors have proposed altruistic unbalanced paired kidney exchange (AUPKE) as a way to increase the chances of finding a match in KEPs for pairs with an O recipient and to partially address the unfairness experienced by this group of recipients (7, 8). In an AUPKE program, compatible pairs consisting of an O blood group donor and a non-O recipient are invited to participate in a KEP. The participation of a compatible pair in a KEP not only increases the chances of finding a match for an incompatible pair with an O recipient; it also increases the chances of all incompatible pairs registered in the pool (9). That said, AUPKE raises numerous ethical issues such as the fairness of allocation procedures, the quality of the organ, the gift relationship, anonymity, and informed consent (10). It also raises logistical issues such as the matching procedure and who should travel (the donor or the organ) (11).

Although there are some case reports on AUPKE, there are currently no established programs or guidelines on this type of KEP in Canada and worldwide (12, 13). A Web-based survey of the directors of kidney transplant centers in the US showed that 47% would not encourage AUPKE because they considered this type of exchange to be nonmedically necessary or unethical (14). Respondents were not, however, asked to explain their rationales. There are no existing studies in the literature exploring transplant professionals’ views on AUPKE. The aim of our qualitative study was to gather empirical data on the perspectives of Canadian transplant professionals working in living organ donation with regard to AUPKE and to look more specifically at the conditions they would consider necessary for the implementation of an AUPKE program. It is important to take into account the views of transplant professionals because they belong to scientific organizations that inform and educate decision makers, helping them to develop policies and guidelines for the fair allocation of organs and implementation of exchange programs.

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MATERIALS AND METHODS

There are no existing empirical studies on transplant professionals’ views on AUKPE; our study was therefore exploratory in nature. We used semistructured interviews, all of which were conducted by the same person (C.D.), to explore the following themes: (i) transplant professionals’ views on AUPKE, (ii) ethical issues and challenges associated with AUPKE, (iii) anticipated benefits, (iv) anticipated negative outcomes, (v) transplant professionals’ roles, (vi) conditions for the implementation of AUPKE, and (vii) sociodemographic characteristics.

The interviews were carried out between November 2011 and May 2012 with health-care professionals working in the field of living organ donation (nephrologists, transplant surgeons, transplant coordinators, social workers, etc.) in three adult transplant centers in Quebec and one in Ontario. The three Quebec centers (out of five adult kidney transplant centers) were selected because they perform a high percentage of annual kidney transplants in the province. The Ontario center is pioneering new approaches in living organ donation and has high living donation rates. Moreover, it is the largest transplant program in Canada. We contacted all of the transplant professionals involved in living organ donation at these centers (identified by the director of each transplant program). Of the 38 professionals who were contacted by email, 19 agreed to participate (three unanswered emails were considered a refusal). The professionals who refused to participate were mostly transplant nephrologists and transplant surgeons (14/19). The rate of participation also varied according to the transplant program (ranging from 30% to 86%). The number of participants was sufficient to achieve data saturation (i.e., additional interviews did not yield any new information). Also, we ensured that there was sufficient internal diversification in our sample in terms of respondent characteristics (gender, position, age, and number of years of experience) (15). The research ethics board of each transplant center approved the study, and all participants gave their informed consent.

The interview transcripts were analyzed using the content and thematic analysis method described by Miles and Huberman (16). This involved the following: (i) establishing a list of themes, which constituted the coding frame; (ii) reading the transcripts and sorting them according to the coding frame to create a more abstract frame of analysis; (iii) adding new themes or categories as they emerged from the transcripts; (iv) organizing these categories into figures, charts or matrices; and (v) drawing corresponding conclusions. The computer software NVivo (version 9) was used to facilitate the qualitative analysis. An independent researcher (A.D.) coded 15% of the raw data, and the rate of coding agreement was subsequently assessed at 82.7%.

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RESULTS

Respondent Characteristics

Almost half of the respondents were physicians (nephrologists or transplant surgeons). The other half were nurses, transplant coordinators, psychologists, social workers, and ethicists. Some transplant teams had more professionals specialized in living organ donation than others, which mainly consisted of physicians and nurses. A majority of the transplant professionals (16/19 or 84.2%) were in favor of AUPKE, whereas three respondents were ambivalent. One was concerned about the compatible pair’s decision-making process, and all three stated that they would only consider AUPKE if it were beneficial to the recipient in the compatible pair or if there were no genetic ties between the donor and recipient. Table 1 summarizes the characteristics of the study participants.

TABLE 1

TABLE 1

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Conditions for the Implementation of AUPKE

The conditions formulated by respondents can be grouped in four categories: (i) logistics of KEPs and AUPKE; (ii) the transplantation team; (iii) information provided to the compatible pair; and (iv) research on transplantation. Table 2 summarizes these conditions with sample interview excerpts.

TABLE 2

TABLE 2

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Logistics of KEPs and AUPKE

Respondents stressed that compatible pairs should not be disadvantaged in terms of the time required to find a match. They did not want the health of compatible pair recipients to be compromised by too long a wait for the transplantation procedure. To resolve this issue, some respondents suggested that compatible pairs agreeing to participate in KEPs should limit their participation to only one match cycle. If no match were found, the transplantation should proceed as originally planned, with the compatible donor. In a similar vein, other respondents suggested allocating extra points to the compatible pair in order to find a match more rapidly.

The second condition was to transport the kidney rather than the donor. In Canadian KEPs (the Living Donor Paired Exchange Registry), the donor is required to travel to the recipient’s health center. In the case of AUPKE, and KEPs in general, respondents wanted to make the process as simple as possible for compatible pairs because they do not benefit directly from their participation in such programs. If transporting the kidney was not an option, some respondents felt that a companion’s travel expenses should be reimbursed.

Certain respondents felt it was important to ensure that the quality of the organ received by the recipient in a compatible pair would be equivalent to the one they would have received from their intended donor. To meet this condition, they suggested that the recipient in a compatible pair should receive an organ from someone the same age or younger than their intended donor. One nephrologist stated that assessment criteria for donors and recipients should be standardized across Canada to ensure uniform results.

Finally, respondents stressed the importance of maintaining anonymity between participants in KEPs and AUPKE programs at the early stages. They were nonetheless open to the idea of participants meeting later if both parties agreed.

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Recommendations for Transplant Teams

For some respondents, it was important to promote KEPs within transplant teams. One nurse mentioned that members of transplant teams that are not involved in KEPs are not necessarily familiar with this approach and might not understand how such programs work. This lack of knowledge could have a negative impact on a donor/recipient pair’s decision to participate in a KEP or AUPKE program. Some professionals also noted the importance of establishing a consensus within the transplant team around AUPKE. All members of the transplant team should be comfortable with this new type of exchange in kidney transplantation. This would prevent team members from giving patients mixed messages.

The other two recommendations concerned necessary resources. One respondent noted that it was important for centers assessing living kidney donors to have sufficient human resources (psychologists, social workers, and nurses). One respondent said that it would be a good idea to have a provincial team in charge of assessing participants in KEPs or an AUPKE program.

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Information Provided to Compatible Pairs

The information provided to compatible pairs was of paramount importance to respondents. The donor and recipient in a compatible pair should be given neutral information that is easy to understand and should in no way feel pressure to participate in an AUPKE. The consent of the compatible pair should be free and informed. Some respondents stated that information about AUPKE should be provided to all compatible pairs who could then decide whether to participate. Others suggested that clinicians should not encourage compatible pairs to participate to obtain a better kidney for the recipient. Finally, some respondents believed that a neutral organization, such as the Kidney Foundation of Canada, should produce information brochures on AUPKE to be distributed to potential donors.

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Research on Transplantation

Several respondents stressed the importance of exploring all possibilities for O recipients in KEPs. This could mean performing blood group incompatible transplantations in certain circumstances. They also stressed the importance of analyzing all aspects of AUPKE and its potential impacts (social, ethical, and psychological) before implementing such a program.

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DISCUSSION

This is the first study to examine transplant professionals’ views on AUPKE. The study explored not only the views of physicians but also those of other professionals involved in the field of living organ donation such as nurses, psychologists, and social workers. Most respondents were open to the idea of AUPKE. It is also worth noting that their views might have evolved since the completion of this study because they are now more familiar with KEPs and AUPKE. For example, the Ontario center was involved in pilot transplant programs run through the Living Donor Paired Exchange Registry when it was launched in 2009. The Quebec centers have had comparatively less experience with KEPs and AUPKE because Quebec was the last province to join the registry in November 2010.

Based on an empirical bioethics approach, this qualitative study shows how empirical data can be used to inform practice and, eventually, to develop clinical guidelines and policies (17). Although our study allowed us to gain an in-depth understanding, the results cannot be generalized beyond the four participating Canadian transplant centers. One of the limitations is the small size of our sample, although this is not unusual for a qualitative study (18). As mentioned previously, among those who declined to take part in the study, there was a higher percentage of nephrologists and surgeons than other transplant professionals. Our results would have been more representative had there been more physicians in our sample. That said, our respondents’ recommendations could be used to develop preliminary guidelines, which could then be tested on a wider scale.

One of the important concerns raised by the respondents in this study was the need to obtain informed consent from both donors and recipients seeking to participate in an AUPKE. Traditionally, the issue of informed consent has been a major bioethical issue for living organ donors (19). In the case of AUPKE, it becomes an important issue for both members of the pair, not just the donor. There is a risk that one member of the pair will put pressure on the other. In her case reports, Ratner has reported varying degrees of enthusiasm about participating in AUPKE programs among some compatible pairs (12). In the development of such programs, it would be important to ensure that both the recipient and donor in a compatible pair understand the implications of AUPKE and that both are equally willing to participate. If one member of the pair were more willing than the other, the living organ donation team would have to examine the case more closely. If there continued to be an imbalance within the pair, the team would have to reconsider their suitability for participation in an AUPKE. The issue of informed consent is particularly important, given that KEPs and AUPKE alter our perception of living organ donation. With these new modalities of living kidney donation, the donor’s gift is anonymous and allocated according to rules determined by neutral organizations, as in deceased organ donation. Moreover, in AUPKE, the benefits of the gift extend beyond the compatible pair to society at large (i.e., more organ transplants may be performed and O blood group recipients have a greater chance of receiving a kidney). Given these societal benefits, one might question whether health professionals will not be tempted to alter the directedness of living donation, actively promoting undirected and altruistic donation to help more patients. They might even go so far as to encourage elective surgical patients to become living organ donors to increase the supply of organs, as proposed by Testa et al. (20).

As mentioned earlier, in organ transplantation, O blood group recipients are disadvantaged by the natural lottery because they wait longer for deceased organ transplantation and can only be transplanted with an organ from an O donor. The concept of the natural lottery, developed by the philosopher John Rawls, refers to the advantageous or disadvantageous nature of individuals’ genetic makeup or circumstances, over which they have no control (e.g., being born healthy or sick, wealthy or poor). According to Rawls’ theory of justice, society should allocate time and resources to compensate for inequalities arising from the natural lottery (21). AUPKE is one way to apply this theory of justice because it helps individuals who are naturally disadvantaged by their blood type. From a utilitarian perspective, it would be justifiable to recruit all compatible pairs consisting of an O blood group donor and a non-O recipient to perform more kidney transplants, address the unfair situation of O recipients, and decrease the organ shortage and waiting times for patients. However, those were not the preferred approaches of our respondents. They were open to informing compatible pairs about this possibility and to performing more kidney transplants if all parties were willing to participate in an AUPKE. They did not, however, want to cause any problems or harm to the compatible pair. This was reflected in their concerns about undue delays in the transplantation process as a result of participation in KEPs and in their reluctance to have donors travel.

Finally, there have been recent reports of good outcomes for both kidney and patient with ABO incompatible kidney transplantation (22). This could solve the problem for O blood group recipients and their access to living kidney transplantation. Some might therefore argue that AUPKE is no longer an interesting option. However, AUPKE will always be useful to increase the chances of transplantation of hard-to-match recipients such as highly sensitized patients. The recruitment of compatible pairs (regardless of the blood group of donor and recipient) will increase these patients’ chances of finding a match and being transplanted.

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CONCLUSION

For the Canadian transplant professionals who participated in this study, AUPKE did not appear unethical or nonmedically necessary. Most were open to this new modality of living kidney transplantation because it increases the chances of O blood group recipients being transplanted. They nonetheless expressed some concerns that should be included in future guidelines. These concerns can be formulated as four recommendations:

  1. Do not disadvantage compatible pairs: i) limit the participation of compatible pairs to one match cycle, and if no match is found, perform the transplantation with the organ from the intended donor; ii) transport the organ rather than having the donor travel.
  2. Establish a consensus within the transplant team, and ensure sufficient human resources to conduct the assessment and manage logistics.
  3. Inform the compatible pair, and ensure that both the donor and recipient understand the AUPKE program and fully agree to participate.
  4. Conduct research in the field of KEPs, and explore all transplant options for O blood group recipients.

Before implementing a large-scale AUPKE program, it will be necessary to explore patients’ and potential donors’ views on AUPKE. Specifically, there are limited data on the willingness of compatible pairs to participate in such programs. Like KEPs and living altruistic donation, AUPKE reflects a paradigm shift in living organ donation. Traditionally, living organ donation was partial, directed, and nonanonymous and occurred within emotional relationships (23). With AUPKE, participants are asked to transform their intended partial donation into an impartial, anonymous, and nondirected gift, as is the case with deceased organ donation. It will be necessary in the future to study the impact of this paradigm shift on all forms of living organ donation.

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Keywords:

Kidney exchange programs; Altruistic unbalanced paired kidney exchange; Bioethics; Qualitative research; Kidney transplantation

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