Avoiding the issue: Patients’ (non)communication with potential living kidney donors
Introduction
There is a widespread shortage of kidneys for transplantation for patients with end stage renal failure. In the Netherlands, average waiting time for a post-mortem donor kidney is between 2.5 and 5 years [1]. During the waiting period, patients are dependent on kidney dialysis, which is associated with a decline in health and quality of life, and increased morbidity and mortality [1], [2], [3]. Living kidney donation (LKD) has proved to be an effective solution for patients on the waiting list: the waiting time is much shorter and the graft survival rates are significantly better [4]. Furthermore, donor risks are low, and in general psychosocial outcomes for living kidney donors are good [5], [6]. Given this, it is not surprising that we find that many patients indeed prefer a living donor to post-mortem kidney transplantation [7].
At present, patients who are eligible for kidney transplantation receive information about LKD during their consultations with the nephrologist and the transplant coordinator. In addition, they receive an information brochure and a DVD, and are invited for an information meeting about LKD. Patients are encouraged to bring family members or friends to these meetings. Despite these efforts, in many situations a living kidney donor is not found. Many studies have focused on the donor perspective. Donor gender imbalance [6], [8], [9], [10], donor–recipient relationship [6], [11], [12], [13], donor quality of life [6], [14], [15], and other donor psychosocial outcomes [6], [16], [17], [18], all have all been studied. In contrast, there seems to be less research on the recipients’ perspective [19]. From a recipient point of view, an important issue is how end stage renal disease patients attempt to find a living donor [20]. Studies have found that attempts to find a donor in the family may be characterized by a lack of discussion, and can cause ‘formidable stress’ in family relationships. However, since this work of Simmons and her colleagues [21], [22], a major change has occurred in the practice of LKD. Previously, for immunological reasons, only first-degree family members were thought to be suitable as donors. But over the last decades donations from other donors have proved to give equally good results [23]. So, anyone (family member, non-family member, and even strangers) is, in principle, eligible as a donor [24], [25], [26]. Donations from non-family members, such as partners and friends, have increased over the past decades [27], [28], [29]. Little research has been done on how patients deal with this increased range of potential living donors. These studies generally show that patients tend to assume a passive waiting attitude towards potential donors. A study by Waterman et al. has indicated that patients were more comfortable accepting family members or friends who took the initiative and volunteered, rather than asking potential donors. They were concerned about pressuring donors (85%), harming their health (83%), or causing them pain or inconvenience (76%) [30]. Another reason for not asking the potential donors was a concern about compromising the relationship with them [31]. Patients differed with respect to how likely they are to ask someone. There are two recent studies from the USA [32], [33]. One included 132 patients eligible for transplantation, and showed that white patients, with college education, with fewer concerns about living donor kidney transplantation, and less favorable perceptions of their current health status were more willing to talk to others about living donation [32]. In the other study half of the respondents (N = 96) reported initiating a conversation with at least one potential donor [33]. The factors associated with initiating a conversation included: a preference for live donor transplantation, a willingness to ask for help, and female gender. Older patients were less likely to initiate a conversation [33]. While these studies give some insight into which patients may be likely to initiate the conversation, we do not know with whom they are most likely to start discussions. It is unclear whether the increased potential range of living donors has also increased the efforts patients may take to find a donor beyond their close family.
Our purpose was an explorative study of how kidney patients who are eligible for transplantation deal with searching a living donor. We asked (1) how active they were in approaching potential donors, and (2) what their relationship was with these potential donors (parents, partners, children, siblings, others). We were especially interested the group of patients who did not find a living donor, as they can tell us about barriers they may have encountered. This information is crucial for improving the care for patients who are seeking a living donor.
Section snippets
Patients
The medical ethics board of the Erasmus University Medical Centre gave approval for the study. All participants gave written consent. We limited our analyses to native Dutch patients.
Patients’ views of donor eligibility
We found three patterns characterising patients’ ideas of who would make an acceptable donor. Characteristics of patients for each pattern are summarized in Table 3. None of these patient characteristics’ was statistically significant related to views of donor eligibility.
Discussion
We found that patients were cautious in discussing living donation with the people around them. We found that older people were less likely to discuss LKD with more than one person. This is in line with the work of Reese et al. [33]. However we did not find general effect for education or gender, as has been found in previous studies [32], [33]. The only statistically significant gender-specific finding was that mothers (compared to fathers) were more likely to discuss LKD with their children.
Acknowledgements
We wish to thank ZonMw, the Netherlands organization for health research and development for the funding of the study. Furthermore, we are grateful to Pete Honig, Jenny Altschuler and Gwynneth Down for sharing their expertise in the field of family therapy, and for their constructive comments on earlier drafts of this manuscript. The formulated opinions expressed and remaining errors remain the responsibility of the listed authors only.
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