Exploring Staff Attitudes Towards Unspecified Kidney Donors in the United Kingdom: Results From the BOUnD Study

Unspecified kidney donation (UKD) has made substantial contributions to the UK living donor programme. Nevertheless, some transplant professionals are uncomfortable with these individuals undergoing surgery. This study aimed to qualitatively explore the attitudes of UK healthcare professionals towards UKD. An opportunistic sample was recruited through the Barriers and Outcomes in Unspecified Donation (BOUnD) study covering six UK transplant centres: three high volume and three low volume centres. Interview transcripts were analysed using inductive thematic analysis. The study provided comprehensive coverage of the UK transplant community, involving 59 transplant professionals. We identified five themes: staff’s conception of the ethics of UKD; presence of the known recipient in the donor-recipient dyad; need for better management of patient expectations; managing visceral reactions about the “typical” unspecified kidney donor; complex attitudes toward a promising new practice. This is the first in-depth qualitative study of attitudes of transplant professionals towards UKD. The data uncovered findings with strong clinical implications for the UKD programme, including the need for a uniform approach towards younger candidates that is adhered to by all transplant centres, the need to equally extend the rigorous assessment to both specified and unspecified donors, and a new approach to managing donor expectations.

GRAPHICAL ABSTRACT

Introduction

Living kidney donation (LKD) is the gold standard treatment for End Stage Kidney Disease [1]. LKD benefits the recipient, who experiences an improved quality and duration of life, and reduces pressure on waiting lists. Kidney transplantation in general reduces the economic burden of renal replacement therapies, thereby allowing healthcare resources to be redistributed more efficiently [2]. In the United Kingdom (UK) there are two pathways to LKD: specified kidney donation (SKD) to a recipient known to the donor, and unspecified kidney donation (UKD) from an unknown donor to an anonymous recipient [3]. Unspecified kidney donation accounts for around 7%–9% of the UK living kidney donor programme and has made a significant contribution, both directly and as part of the UK Living Kidney Sharing Scheme (UKLKSS). Unspecified Kidney Donors (UKDrs) are used within the UKLKSS to trigger a chain of transplants (called “altruistic donor chains”) between 2 or more incompatible donor–recipient pairs. The remaining organ from the donor at the end of the chain is then allocated to a recipient on the national transplant list [1].

Despite this, some transplant professionals feel uncomfortable caring for these individuals, mainly due to concerns that wishing to donate is a manifestation of an underlying psychopathology [4, 5]. Consequently, a mandatory and rigorous psychological assessment is undertaken in all UKDrs [6]. Such an assessment is optional for specified kidney donors (SKDrs) and is at the discretion of the individual case or transplant centre. The programme also remains controversial because there is a general lack of data on outcomes and other aspects due to its relative novelty [1, 7, 8]. Concerns have been raised about whether the UKD programme in its current form represents an optimal use of NHS resources. This concern is based on anecdotal reports that UKDrs receive more meticulous and lengthy screening than other Living Kidney Donors, thus creating additional healthcare costs. UKD raises a number of ethical concerns for medical professionals, primarily the dilemmas around subjecting a healthy individual with no connection to the recipient to a serious operation. For these reasons, some healthcare professionals may have concerns that could influence the messages that they convey to potential donors.

A qualitative study exploring the experiences of UKDrs suggested that some participants were distressed and confused by discouragement from healthcare professionals, and the study highlighted the desirability for consistent messaging from staff members [9]. Participants also reported feeling distressed by the rigorous mental health assessment, believing that their motivations and overall sanity were being judged [9]. One study has explored transplant physicians’ views on the nature of altruism in UKDrs and questioned whether it existed [10]. We therefore wished to explore the attitudes of healthcare professionals in the UK towards unspecified kidney donation, as well as to investigate whether there were barriers to donation.

To our knowledge, this is the first study to provide an in-depth exploration of the attitudes of UK transplant professionals towards UKDrs, and forms part of the Barriers and Outcomes in Unspecified Donation (BOUnD) study, which is exploring the barriers to UKDrs in the United Kingdom [8]. A qualitative study was performed to determine potential issues that are not necessarily apparent in questionnaire-based research. The aim of this study was to investigate the broader views and experiences of the UK professional transplant community towards UKD, and explore to differences between centres, and different members of the multidisciplinary team.

Patients and Methods

Participants and Setting

The participants in this study were recruited as part of the BOUnD study [8]. Funded by the National Institute for Health Research (NIHR), staff and patients were recruited from all 23 UK transplant centres. To explore the attitudes of UK transplant professionals in more depth, a sub-study recruited staff from six UK transplant centres: three high volume centres and three low volume centres. Centres were defined as high or low volume based on UKD numbers at these centres in 2016/17 [11]. Analysis of national data demonstrated that approximately 50% of UKDrs donated at five of the 23 transplant centres. Centres were grouped according to numbers of UKDrs and those with the highest and lowest total numbers were approached. Using opportunistic sampling, representatives of staff groups involved in the UKD programme were recruited, including but not limited to, transplant co-ordinators, nursing staff, nephrologists, clinical psychologists, and surgeons.

Interview Topic Guide

Semi-structured interviews were conducted according to a topic guide. This was developed based existing literature on the topic and staff focus grouped performed as part of BOUnD. The interview topic guide covered:

1) Terminological preferences for UKDrs

2) Staff perceptions of UKDrs and thoughts on their specific motivations

3) Staff perceptions of their own work with UKDrs

4) Perceptions of the transplant professionals working with UKDrs and how treatment differed to SKDrs

5) Opportunity to reflect and provide suggestions for developing the programme.

Telephone and in-person interviews were conducted by two researchers (authors 8 and 9).

Qualitative Analysis

All interviews were audio-recorded and transcribed verbatim. The interviews were anonymised, and full transcripts were circulated to members of the study team (authors 1, 7, 8, 9, 12). The data was analysed using NVivo 11 Plus software.

An inductive thematic analysis of the data was conducted. This methodology was chosen because it is data-driven in nature and not linked to any pre-existing theoretical model [12]. It is considered suitable when investigating a diverse data set that is expected to reflect a broad range of attitudes towards the research questions [12]. The analysis involved multiple consecutive readings of the transcripts in order to become familiar with the data and to identify and code themes and categories and highlight relevant patterns across the data set [13, 14]. The next step was to analyse the codes and consider how these could be grouped thematically to encompass a range of ideas around a common topic [15]. This grouping of codes into themes and sub-themes was the product of repeated discussion between the coder (MZ) and the research team (HM, SN, JC). The analysis conformed to the COREQ (Consolidated criteria for reporting qualitative research) checklist [16]. In order to ensure reliability and eliminate preconceptions about the data set, the analysis was conducted blind.

Results

59 interviews were conducted between April and November 2016. Thirty were from high volume centres and 29 from low volume centres. The average interview length was 32 min (Range: 10–76 min; SD = 15.33).

Participant Characteristics

The study provided broad coverage of the UK transplant community. The majority of participants were women (57%), and the most frequent professional roles were transplant coordinators (20%), and nursing staff (17%) (Figure 1).

FIGURE 1

FIGURE 1. Participant characteristics.

Staff Attitudes Towards UKD

Five major themes emerged from the data [1]: staff’s conception of the ethics of UKD [2]; presence of the known recipient in the donor-recipient dyad [3]; need for better management of patient expectations [1]; managing visceral reactions about the “typical” UKD and implications for treatment and [4] complex attitudes toward a promising new practice. Each theme and corresponding sub-theme(s) are discussed in detail below (Figure 2). Table 1 provides supporting quotations.

FIGURE 2

FIGURE 2. Thematic diagram.

TABLE 1

TABLE 1. Themes with corresponding subthemes and quotations (H—denotes high volume transplant centre, L—denotes low volume transplant centres).

Theme 1: Staff’s Conception of the Ethics of UKD

Many staff expressed the view that UKD is ethically unproblematic. They had an overriding awareness of, and commitment to, ethical principles and their role within transplantation and living donation, and for the most part felt that UKD fell within those ethical parameters. However, the data remained heterogenous on this topic, resulting in the following sub-themes.

Duty of Non-Maleficence: The Paradox of Inflicting Injury on Healthy Individuals for a Positive Purpose

It was apparent that whilst some participants perceived operating on healthy individuals as an ethical problem, others did not. This was most commonly raised by surgeons, although many did not think it was a decisive reason against UKD. This was mainly due to recognition that the benefits of UKD outweighed the harms, providing the donors were fully informed, aware of the risks, and that they had sufficient capacity to consent. Some regarded the concern as outdated. Many doctors tended to express a sense of awareness of the paradoxical nature of their actions, i.e., the dilemmas of a healthy individual undergoing unnecessary surgery, albeit for a greater good. Many healthcare professionals did not think that their ethical reservations influenced potential donors.

Balancing Risk to Donors and Benefit to Recipients

Whilst staff members acknowledged the risks of donation, they were commonly weighed against the benefits, which they felt clearly favoured UKD because of the benefit to recipients and other aspects of the healthcare system. They emphasised the overriding benefit of avoiding dialysis and freeing up dialysis facilities for new patients, and to start a new life. Across all centres the prevailing attitude was that as long as people were psychologically and physically fit to be donors, the risks to the donor was minimal in comparison to the benefit to the recipient.

Ethical Concerns Surrounding Minimum Age Limits for Donors

Many staff expressed reservations about encouraging UKD amongst young individuals; referring to people in their mid-twenties. Concerns were related to their ability to provide informed consent and that they may not fully grasp how the risks could affect them later in life. Some participants brought up concerns for women specifically, due to potential implications around pregnancy that perhaps may not have been considered by younger women. Some related the decision to their own children. Others felt uncomfortable discriminating on the basis of age, with some centres having a minimum age restriction and others not. Some did not think that age should affect suitability whilst others were very strict with this criterion. Concern was also expressed that younger people might be more susceptible to media messaging and therefore more easily influenced and impulsive in their decision-making process.

Theme 2: Presence of the Known Recipient in the Donor-Recipient Dyad

Many participants expressed the view that a major factor influencing their attitudes was the presence of a known vs. unknown recipient. Some staff members said that the donor-recipient relationship in some cases made the donation process more difficult for the staff due to presence of complex family dynamics. They commented that, in some respects, UKD was more straightforward because of the absence of a relationship between donor and recipient. However, there was a notable lack of consensus on this issue. For some staff, UKD presented more difficulties than SKD due to issues such as UKDrs struggling with the requirement for anonymity from the unknown recipient or lack of support network for UKDrs. Overall, however, there was a greater perception that SKD was more emotionally complex due to emotional and physical proximity between the donor and the recipient, and therefore associated with issues such as anxiety, guilt and familial obligation (as opposed to altruism).

Understanding UKD vs. SKD Motivations

The role of altruism as a motivator for UKD was questioned by some participants. The emphasis often placed on the mandatory psychological assessment by professionals was considered to be important not only to elicit a UKDrs’ psychological state, but to further clarify their motivation to donate. Some found UKDrs’ motivations to be complex or unclear as, at times, it was difficult to know if candidates were purely selfless or self-interested. Some staff noted that less attention was paid to the motivations of SKDrs, and the potentially complex family dynamics and psychological impact on both the donor and recipient.

Theme 3: Need for Better Management of Patient Expectations

Many professionals emphasised the importance of creating realistic expectations for the UKD process: the rigorous psychological assessment, the risks associated with the operation and recovery and the potential emotional consequences post-donation. Anonymity was raised as an issue, especially with regard to the negative emotions that may be experienced should there be no acknowledgment from the recipient and the need to prepare UKDrs for this, as it may present more of an emotional challenge for donors than anticipated. It was also stressed that donors should be informed of these issues from the very beginning of the process. Overall, UKDrs were thought to underestimate surgical risks and wanted to maintain control of the process and be in charge of navigating it.

Theme 4: Managing Visceral Reactions About the “Typical” UKD and Implications for Treatment

Many participants admitted that they struggled with understanding why UKDrs come forward. Despite their roles facilitating living donation, some said that they would not themselves consider donating as a UKD or encourage family members to do so. Some participants reported that they did not think that their personal opinions influenced self-withdrawal. UKDrs were referred to by some as being a mentally unstable group.

Theme 5: Complex Attitudes Toward a Promising New Practice

UKD was generally regarded as still being in its infancy and that peoples’ attitudes may change once more people donate and transplant professionals have more experience. Some transplant professionals said that there was a need for the transplant community to understand where UKDrs fitted in within living donation. Comments could be reasonably interpreted as suggesting that UKDrs were not as highly valued as SKDrs.

Those working in lower volume centres, who consequentially had less experience, felt that they were unable to make specific generalisations about how they perceive UKDrs as an overall group. Across all centres participants tended to acknowledge that living donor kidneys were the best option for someone on the waiting list (when compared to deceased donor kidneys), and that UKD was a promising and growing avenue for live donor transplantation. There was some impression that attitudes were moving away from the earlier stereotypes of UKDrs being driven by pathological motives, although these views persisted and were still quite commonly held.

Need to Promote Public Awareness and Acceptance of UKD

Almost all the staff members who stated that they were broadly in favour of the UKD programme suggested the need to find better ways to promote it amongst the public.

They expressed the view that this would both increase numbers and ensure that future potential donors fully understood the process before offering to donate, therefore reducing dropout rate and conserving resources. Many staff members referred to the effectiveness of utilising past donors in public awareness campaigns, as well as publicising the experience of both donors and recipients.

Discussion

This qualitative interview study explores the views and experiences of UKD participants drawn from the professional transplant community in the United Kingdom. It provides an in-depth analysis of 59 interviews, currently representing the largest qualitative study investigating transplant professionals’ attitudes toward UKD. The main findings are that many participants expressed reservations about proceeding with younger potential donors and favoured specifying a minimum age limit that is higher than the current legal minimum (18 years old). Additionally, many staff expressed concerns about the psychological stability of UKDrs and found their motivations to be complex or unclear. Many staff raised the need to manage UKD expectations particularly around communication with recipients. Finally, the results demonstrate that some healthcare professionals did not think that their personal opinions influenced voluntary self-withdrawal by UKD candidates.

Over the past decade, transplant professionals have criticised the ethics surrounding LKD [17–19], primarily due to the obligation of the principle of non-maleficence. The present study probed the ethical concerns that medical staff must balance when considering all aspects of LKD. Most participants, whilst they still may not be completely comfortable with UKD, recognised that the potential benefits outweighed potential harms, and acknowledged that UKDrs undergo a rigorous assessment process, including a thorough psychological assessment. It was noted that amongst the various roles covered in this study, it was predominantly surgeons who raised the ethical concern of operating on healthy individuals most frequently. We speculate that this is because they are ultimately responsible for the physical act and are answerable should complications occur.

Another ethical consideration was related to donor age; specifically the concern that younger donors may not fully understand the longer-term implications of their decision to donate. Previous research has explored whether minors and young adults should be legally permitted to qualify as donor candidates [20–23]. Using qualitative methodology, Thys et al. (2019) found three reasons for a cautionary view of living donation by minors and young adults, which were all echoed in the present study: concern about the long-term medical and psychosocial risks of donating a kidney at a young age, younger donors’ capacity to make informed decisions, perhaps related to their developmental stage and the possibility of younger individuals’ greater susceptibility to familial pressure. Similarly, the present study highlighted the ethical dilemmas surrounding age of donation in UKDrs specifically. One emergent concern, specifically for young women, was the possibility of complications related to pregnancy [24, 25]. Our findings suggested there is an inconsistency between transplant centres in the approach taken to younger candidates. As things stand, younger potential donors who are turned down on the grounds of their age by one centre could present to another centre for a different outcome. A national consensus on a minimum age limit or alternatively transparent regional variation would be preferable. Transplant units should publicly clarify what their local policy is both for staff members and potential donors.

One critical issue that emerged from the data was the complexity around the role of altruism within UKD, and why staff placed an overwhelming emphasis on it when discussing UKDrs’ motivations. In the UK, all LKD candidates must undergo evaluation by an Independent Assessor on behalf of the Human Tissue Authority (HTA) in order for the donation to be legally approved. The HTA refer to “altruism” as a means of distinguishing between types of donor, rather than it being a prerequisite for UKD. Our findings indicate that staff attach more weight to the concept of “altruism” than the minimum standard applied by the HTA. In fact, almost all staff reported that they referred to UKDrs as “altruistic donors” even though some donors prefer the term “unspecified” [26]. We question how important it is that donors are motivated by “pure altruism,” as opposed to what might be seen as less selfless reasons. For example, staff members cited a range of motivations they had seen, including war veterans giving back if they have taken a life in the past, individuals atoning for bad behaviour, relationship with renal failure patients, or people seeking religious “credits.” Whilst none of these can be characterised as strictly altruistic we argue that likewise they cannot be put in the same category as receiving material or financial benefit. Previous discussions in the transplant literature demonstrate inconsistency in the way the principle of altruism is applied to living donation [27, 28]. Saunders (2012), for example, argued that while rejecting certain questionable motivations, it is short-sighted to place overriding emphasis on altruism as the guiding principle. He suggested that solidaristic donation—motivated by feelings of social or group-focused solidarity—seems to encompass altruism as well as other acceptable motivations [28]. The present study supported the argument that a broader definition of acceptable motivations is appropriate and would perhaps open the door to a larger pool of donors.

There is an apparent assumption held by many staff members that SKDrs choose to donate purely out of love and loyalty to their loved one or family member. Conversely, the motives of UKDrs are regarded with suspicion and interrogated more intensely by some members of the medical team. Whilst we acknowledge that SKDrs may derive more benefit than UKDrs due to their personal connection with the recipient, we question whether the more critical approach towards UKDrs motivations by the medical team is justified or logical. Many staff members, whilst acknowledging the importance of the rigorous assessment of UKD, noted that the same standards were not always applied to SKDrs and questioned whether they should be, due to potential issues such as guilt, family obligation, manipulation or reciprocity. Some authors have even suggested restraint of the LKD programme because of the possible social and familial tensions it may provoke [29]. To date there has been very little research on the complex family dynamics of LKD but what little literature does exist demonstrates that feelings of obligation, psychological distress and social-familial alienation following donations are very real [30, 31]. There is an argument to be made that assessment of SKDrs should be brought up to the same rigorous standards to that of UKDrs.

The traditional mindset, documented in previous literature [32, 33], that UKDrs are driven by a form of psychopathology, was also suggested by the current study. Our study demonstrated that there is still a lot of negativity towards UKD, and thus the need to educate individuals towards a more open-minded mentality towards all living kidney donors. Whilst there is not a strong body of evidence affirming the psychological wellbeing of UKDrs, neither is there evidence of an underlying psychopathology. Previous research demonstrates that UKDrs have positive outcomes [34] and equivalent psychological outcomes to SKDrs [9, 35]. Motives are honourable, however the evidence to date for the personal benefit of UKD is mixed [36], and studies reporting benefits are mainly retrospective [37]. The BOUnD study will hopefully help to fill this gap in the literature [8]. We feel strongly that further training amongst staff is necessary to develop a consistent and affirmative approach to UKDrs at all centres. A concerted effort to increase healthcare professionals’ awareness of the value of UKDrs, and to address their concerns, would greatly strengthen the overall programme.

A previous study investigating the experiences of completed, medically and self-withdrawn donors [38], found that some potential UKDrs who self-withdrew from the programme reported that they did so because of their impression that some healthcare staff were against them subjecting themselves to surgery. However, in this study, staff members did not perceive that their personal opinions were a factor in self-withdrawal. The clinical implication of this disconnect would be to ensure that the staff’s private opinions do not affect their treatment of donors or influence the way they communicate with them. It is important for staff members to present a consistent and unbiased position even if they have personal reservations about UKD. Should professionals strongly object to UKD, it may be advisable to consider whether professionals should be allowed to conscientiously object to being involved. Such a system would allow healthcare professionals to choose to opt out from the practice if it goes against their personal beliefs and values.

Many staff members expressed the view that donor expectations needed to be managed, specifically when it comes to the issue of anonymity. There is however a larger discussion amongst UKD programmes globally around whether or not the condition of anonymity should be revisited [10, 26, 39, 40]. In one of the few qualitative studies of physicians’ attitudes towards UKD, Fortin et al. (2008) found considerable opposition to lifting the strict requirement for anonymity [41]. This is in line with the current study, which found that some staff acknowledged that some UKDrs struggled with the requirement for anonymity, principally due to a strong psychological need for connection with the recipient. This correlates with a paper by Pronk et al which identified that some UKDrs remained troubled by and curious about the lack of contact with their recipient many years after their donation [42]. Future studies need to probe this issue both from the perspective of the recipient as well as the donor to determine if there is a mutual reciprocal benefit that challenges the current rules around anonymity. It should be noted that for a donor, the ability to know the outcome of the donation does not contradict the principle of altruism. Rather, knowledge of the outcome may relate to the need for closure.

Strengths and Limitations

The strengths of this study lie in the number of interviews which allowed for data saturation. It is acknowledged that the data were collected 7 years ago from only six centres, and that transplant professionals’ perspectives could have evolved since. However, a significant shift in either positive or negative views or opinions does not appear apparent within the academic or clinical environment.

Many participants, particularly those working in low volume transplant centres, acknowledged that they had only minimal clinical experience working with UKDrs. Consequently, these interviews were much shorter than those conducted in higher volume centres, however the overall impressions were similar. Additionally, opportunistic sampling is a limitation which should be addressed in future research. However, the sample in our study was still representative of the transplant community. Finally, we were not able to adjust for interviewees’ exposure. Despite these limitations, this is the first qualitative study to assess the approach of transplant professionals towards UKDrs in depth and as such offers valuable insights.

This paper is applicable to other areas of transplantation, and indeed the wider healthcare setting, by acknowledging the relationship between professionals’ views and the impact of their subconscious communication to patients. Participants in this study were explicitly asked whether they felt they unduly influenced UKDrs during their interactions with them and reported that they did not. However, a study conducted simultaneously within a group of donors and withdrawn donor candidates who would have been cared for by some of these same individuals reported differently. Healthcare professionals ought to be mindful of how their views may negatively influence patients in the clinical environment as they may not be fully aware of their impact.

Conclusion

This study provides valuable insight into the practice of UKD and has identified key areas which need addressing. There needs to be clarity on the age limit policy for each transplant centre, a discussion around the necessity of formal psychological assessment for all living kidney donors, and a new approach to managing UKDrs’ expectations, particularly around anonymity. Specific suggestions are to enhance training and improve consistency between all members of the multidisciplinary teams across all UK transplant centres. Implementing these findings will strengthen the practices towards LKD, improve the donation experience for everyone involved, and result in an increased acceptance of unspecified donation as a key element in the kidney transplant programme.

Data Availability Statement

The raw data supporting the conclusion of this article will be made available by the authors, without undue reservation.

Ethics Statement

The studies involving human participants were reviewed and approved by Berkshire Research Ethics Committee (Ref 15/SC/0637). The patients/participants provided their written informed consent to participate in this study.

Author Contributions

MZ: data curation, formal analysis, methodology, resources, software, validation, visualization, writing—original draft, writing—review and editing. NM: conceptualization, funding acquisition, methodology, project administration, supervision, validation, visualization, writing—review and editing. HD: writing—review and editing. PG: investigation, writing—review and editing. SN: methodology, supervision, writing—review and editing. JC: methodology, supervision, writing—review and editing. TA: investigation, writing—review and editing. AC: investigation, writing—review and editing. LW: investigation, writing—review and editing. PM: writing—review and editing. HM: conceptualization, data curation, formal analysis, funding acquisition, methodology, project administration, supervision, validation, visualization, writing—review and editing. All authors contributed to the article and approved the submitted version.

Funding

All authors have been completely or partially funded by the National Institute for Health Research (Health Service and Delivery Research programme) (project number 13/54/54). This research grant is to support a longitudinal prospective study addressing a number of different aspects of unspecified kidney donation. The funder had no involvement in the preparation of this manuscript.

Conflict of Interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Acknowledgments

The study team would like to thank the Give a Kidney charity for their contribution to patient and public involvement for this project.

Abbreviations

BOUnD, Barriers and Outcomes in Unspecified Donation; HTA, human tissue authority; LKD, living kidney donation; NHS, National Health Service; SKD, specified kidney donation; SKDrs, specified kidney donors; UKD, unspecified kidney donation; UKDrs, unspecified kidney donors; UKLKSS, UK Living Kidney Sharing Scheme; UK, United Kingdom.

References

1. Maple, H, Draper, H, Gogalniceanu, P, Burnapp, L, Chilcot, J, and Mamode, N. Donating a Kidney to a Stranger: A Review of the Benefits and Controversies of Unspecified Kidney Donation. Ann Surg (2020) 272:45–7. doi:10.1097/SLA.0000000000003855

PubMed Abstract | CrossRef Full Text | Google Scholar

2. Jarl, J, Desatnik, P, Peetz Hansson, U, Prütz, KG, and Gerdtham, UG. Do kidney Transplantations Save Money? A Study Using a Before-After Design and Multiple Register-Based Data from Sweden. Clin Kidney J (2018) 11(2):283–8. doi:10.1093/ckj/sfx088

PubMed Abstract | CrossRef Full Text | Google Scholar

3. Dor, FJ, Massey, EK, Frunza, M, Johnson, R, Lennerling, A, Loven, C, et al. New Classification of ELPAT for Living Organ Donation. Transplantation (2011) 91(9):935–8. doi:10.1097/TP.0b013e3182129236

PubMed Abstract | CrossRef Full Text | Google Scholar

4. Kaplan, BS, and Polise, K. In Defense of Altruistic Kidney Donation by Strangers. Pediatr Nephrol (2000) 14(6):518–22. doi:10.1007/s004670050806

PubMed Abstract | CrossRef Full Text | Google Scholar

5. Spital, A. Evolution of Attitudes at U.S. Transplant Centers toward Kidney Donation by Friends and Altruistic Strangers. Transplantation (2000) 69(8):1728–31. doi:10.1097/00007890-200004270-00035

PubMed Abstract | CrossRef Full Text | Google Scholar

6.Specific Considerations in Directed and Non-directed Altruistic Donation. Guidelines for Living Donor Kidney Transplantation. British Transplantation Society and Renal Association (2018).

Google Scholar

7. Burnapp, L, Van Assche, K, Lennerling, A, Slaats, D, Van Dellen, D, Mamode, N, et al. Raising Awareness of Unspecified Living Kidney Donation: an ELPAT* View. Clin Kidney J (2019) 13(2):159–65. doi:10.1093/ckj/sfz067

PubMed Abstract | CrossRef Full Text | Google Scholar

8. Gare, R, Gogalniceanu, P, Maple, H, Burnapp, L, Clarke, A, Williams, L, et al. Understanding Barriers and Outcomes of Unspecified (Non-directed Altruistic) Kidney Donation from Both Professional's and Patient's Perspectives: Research Protocol for a National Multicentre Mixed-Methods Prospective Cohort Study. BMJ open (2017) 7(9):e015971. doi:10.1136/bmjopen-2017-015971

PubMed Abstract | CrossRef Full Text | Google Scholar

9. Clarke, A, Mitchell, A, and Abraham, C. Understanding Donation Experiences of Unspecified (Altruistic) Kidney Donors. Br J Health Psychol (2014) 19(2):393–408. doi:10.1111/bjhp.12048

PubMed Abstract | CrossRef Full Text | Google Scholar

10. Fortin, MC, Dion-Labrie, M, Hébert, MJ, and Doucet, H. The Enigmatic Nature of Altruism in Organ Transplantation: a Cross-Cultural Study of Transplant Physicians' Views on Altruism. BMC Res Notes (2010) 3:216. doi:10.1186/1756-0500-3-216

PubMed Abstract | CrossRef Full Text | Google Scholar

11.NHSBT. Organ Donation and Transplantation Activity Report 2016/17. NHS Blood and Transplant (2017). p. 32–49.

Google Scholar

12. Braun, V, and Clarke, V. Using Thematic Analysis in Psychology. Qual Res Psychol (2006) 3(2):77–101. doi:10.1191/1478088706qp063oa

CrossRef Full Text | Google Scholar

13. Attride-Stirling, J. Thematic Networks: an Analytic Tool for Qualitative Research. Qual Res (2001) 1(3):385–405. doi:10.1177/146879410100100307

CrossRef Full Text | Google Scholar

14. Holloway, I, and Todres, L. The Status of Method: Flexibility, Consistency and Coherence. Qual Res (2003) 3(3):345–57. doi:10.1177/1468794103033004

CrossRef Full Text | Google Scholar

15. Boyatzis, RE. Transforming Qualitative Information: Thematic Analysis and Code Development. Thousand Oaks, CA, US: Sage Publications, Inc (1998). 184.

Google Scholar

16. Tong, A, Sainsbury, P, and Craig, J. Consolidated Criteria for Reporting Qualitative Research (COREQ): a 32-item Checklist for Interviews and Focus Groups. Int J Qual Health Care (2007) 19(6):349–57. doi:10.1093/intqhc/mzm042

PubMed Abstract | CrossRef Full Text | Google Scholar

17. Dalal, AR. Philosophy of Organ Donation: Review of Ethical Facets. World J Transpl (2015) 5(2):44–51. doi:10.5500/wjt.v5.i2.44

PubMed Abstract | CrossRef Full Text | Google Scholar

18. Frunza, M, Sandu, F, Catalin-Vasile, B, and Ovidiu, G. Altruistic Living Unrelated Organ Donation at the Crossroads of Ethics and Religion. A Case Study. J Study Religions Ideologies (2011) 9(27):3–24.

Google Scholar

19. Rudow, DL. Experiences of the Live Organ Donor: Lessons Learned Pave the Future. Narrative Inq Bioeth (2012) 2(1):45–54. doi:10.1353/nib.2012.0004

CrossRef Full Text | Google Scholar

20. Broeckx, N. Living Organ Donation and Minors: A Major Dilemma. Eur J Health L (2013) 20:41–62. doi:10.1163/15718093-12341253

PubMed Abstract | CrossRef Full Text | Google Scholar

21. Campbell, M, Wright, L, Greenberg, RA, and Grant, D. How Young Is Too Young to Be a Living Donor? Am J Transplant (2013) 13(7):1643–9. doi:10.1111/ajt.12307

PubMed Abstract | CrossRef Full Text | Google Scholar

22. Thys, K, Borry, P, Schotsmans, P, and Dobbels, F. Should Minors and Young Adults Qualify as Potential Live Kidney Donors? the Views of International Transplant Professionals. Pediatr Transpl (2019) 23(6):e13526. doi:10.1111/petr.13526

CrossRef Full Text | Google Scholar

23. Capitaine, L, Thys, K, Van Assche, K, Sterckx, S, and Pennings, G. Should Minors Be Considered as Potential Living Liver Donors? Liver Transpl (2013) 19(6):649–55. doi:10.1002/lt.23633

PubMed Abstract | CrossRef Full Text | Google Scholar

24. Ibrahim, HN, Akkina, SK, Leister, E, Gillingham, K, Cordner, G, Guo, H, et al. Pregnancy Outcomes after Kidney Donation. Am J Transpl (2009) 9(4):825–34. doi:10.1111/j.1600-6143.2009.02548.x

CrossRef Full Text | Google Scholar

25. Reisaeter, AV, Røislien, J, Henriksen, T, Irgens, LM, and Hartmann, A. Pregnancy and Birth after Kidney Donation: the Norwegian Experience. Am J Transpl (2009) 9(4):820–4. doi:10.1111/j.1600-6143.2008.02427.x

CrossRef Full Text | Google Scholar

26. Mamode, N, Lennerling, A, Citterio, F, Massey, E, Van Assche, K, Sterckx, S, et al. Anonymity and Live-Donor Transplantation: an ELPAT View. Transplantation (2013) 95(4):536–41. doi:10.1097/TP.0b013e31827e31f7

PubMed Abstract | CrossRef Full Text | Google Scholar

27. Moorlock, G, Ives, J, and Draper, H. Altruism in Organ Donation: an Unnecessary Requirement? J Med Ethics (2014) 40(2):134–8. doi:10.1136/medethics-2012-100528

PubMed Abstract | CrossRef Full Text | Google Scholar

28. Saunders, B. Altruism or Solidarity? the Motives for Organ Donation and Two Proposals. Bioethics (2012) 26(7):376–81. doi:10.1111/j.1467-8519.2012.01989.x

PubMed Abstract | CrossRef Full Text | Google Scholar

29. Scheper-Hughes, N. The Tyranny of the Gift: Sacrificial Violence in Living Donor Transplants. Am J Transpl (2007) 7(3):507–11. doi:10.1111/j.1600-6143.2006.01679.x

CrossRef Full Text | Google Scholar

30. Fisher, PA, Kropp, DJ, and Fleming, EA. Impact on Living Kidney Donors: Quality of Life, Self-Image and Family Dynamics. Nephrol Nurs J (2005) 32(5):489.

Google Scholar

31. Franklin, PM, and Crombie, AK. Live Related Renal Transplantation: Psychological, Social, and Cultural Issues. Transplantation (2003) 76(8):1247–52. doi:10.1097/01.TP.0000087833.48999.3D

PubMed Abstract | CrossRef Full Text | Google Scholar

32. Fellner, CH, and Schwartz, SH. Altruism in Disrepute. Medical versus Public Attitudes toward the Living Organ Donor. N Engl J Med (1971) 284(11):582–5. doi:10.1056/NEJM197103182841105

PubMed Abstract | CrossRef Full Text | Google Scholar

33. Henderson, AJ, Landolt, MA, McDonald, MF, Barrable, WM, Soos, JG, Gourlay, W, et al. The Living Anonymous Kidney Donor: Lunatic or Saint? Am J Transpl (2003) 3(2):203–13. doi:10.1034/j.1600-6143.2003.00019.x

CrossRef Full Text | Google Scholar

34. Massey, EK, Pronk, MC, Zuidema, WC, Weimar, W, van de Wetering, J, and Ismail, SY. Positive and Negative Aspects of Mental Health after Unspecified Living Kidney Donation: A Cohort Study. Br J Health Psychol (2022) 27(2):374–89. doi:10.1111/bjhp.12549

PubMed Abstract | CrossRef Full Text | Google Scholar

35. Maple, H, Chilcot, J, Weinman, J, and Mamode, N. Psychosocial Wellbeing after Living Kidney Donation - a Longitudinal, Prospective Study. Transpl Int (2017) 30(10):987–1001. doi:10.1111/tri.12974

PubMed Abstract | CrossRef Full Text | Google Scholar

36. Timmerman, L, Laging, M, Westerhof, GJ, Timman, R, Zuidema, WC, Beck, DK, et al. Mental Health Among Living Kidney Donors: a Prospective Comparison with Matched Controls from the General Population. Am J Transpl (2015) 15(2):508–17. doi:10.1111/ajt.13046

CrossRef Full Text | Google Scholar

37. Lim, WH, Chan, KE, Ng, CH, Tan, DJH, Tay, PWL, Chin, YH, et al. A Qualitative Systematic Review of Anonymous/unspecified Living Kidney and Liver Donors' Perspectives. PLoS One (2022) 17(12):e0277792. doi:10.1371/journal.pone.0277792

PubMed Abstract | CrossRef Full Text | Google Scholar

38. Zuchowski, M, Mamode, N, Draper, H, Gogalniceanu, P, Norton, S, Chilcot, J, et al. Experiences of Completed and Withdrawn Unspecified Kidney Donor Candidates in the United Kingdom: An Inductive Thematic Analysis from the BOUnD Study. Br J Health Psychol (2021) 26:958–976. doi:10.1111/bjhp.12514

PubMed Abstract | CrossRef Full Text | Google Scholar

39. Adams, PL, Cohen, DJ, Danovitch, GM, Edington, RM, Gaston, RS, Jacobs, CL, et al. The Nondirected Live-Kidney Donor: Ethical Considerations and Practice Guidelines: A National Conference Report. Transplantation (2002) 74(4):582–9. doi:10.1097/00007890-200208270-00030

PubMed Abstract | CrossRef Full Text | Google Scholar

40. Pronk, MC, Slaats, D, van der Pant, KAMI, Vervelde, J, Dooper, IM, Dor, FJMF, et al. Toward a Conditional Approach to Anonymity? an Explorative Multicenter Longitudinal Study Among Anonymous Living Kidney Donors and Recipients. Transpl Int (2017) 30(12):1243–52. doi:10.1111/tri.13016

PubMed Abstract | CrossRef Full Text | Google Scholar

41. Fortin, M-C, Dion-Labrie, M, Hebert, M-J, Achille, M, and Doucet, H. Are 'anonymous' and 'non-Directed' Prerequisites for Living Altruistic Donation? the Views of Transplant Physicians from France and Quebec. Soc Sci Med (2008) 67(1):147–51. doi:10.1016/j.socscimed.2008.02.026

PubMed Abstract | CrossRef Full Text | Google Scholar

42. Pronk, MC, Zuidema, WC, Weimar, W, Van De Wetering, J, Ismail, SY, and Massey, EK. Twenty Years of Unspecified Kidney Donation: Unspecified Donors Looking Back on Their Donation Experiences. Transpl Int (2023) 36:10959. doi:10.3389/ti.2023.10959

PubMed Abstract | CrossRef Full Text | Google Scholar