Reviewer 2
Title: Decision making around living and deceased donor kidney transplantation: a qualitative study exploring the importance of expected relationship changes
Version: 1 Date: 17 March 2012
Reviewer: James Rodrigue
Reviewer's report:
This is an interesting qualitative examination of decision-making around live donor kidney transplantation. It is somewhat unique in that it includes interviews with former donors and both living donor transplant recipients and those recipients who decided not to pursue living donor transplantation despite having a potential donor available. The study is focused on a topic of high clinical relevance because we know relatively little about how donor-recipient relationship changes affect this decisionmaking process and how such relationships actually change after a living donor transplant. The qualitative methods used are standard and acceptable.
The manuscript is well organized and written. The authors give good considerations to most of the major limitations.
There are several issues that warrant further consideration by the authors.
Major Compulsory Issues
1. The authors note in their Introduction that the motivations for pursuing living donor kidney transplantation (vs. deceased donor transplant) are unknown. However, there is a growing body of research on this topic, especially in the past five years or so. In fact, some of this literature comes from a group in The Netherlands. The authors should consider discussing some of these findings, especially those that are relevant to the primary topic of interest in this paper, i.e., concerns about the donor-recipient relationship.
Answer
Even though it is not known whether deceased donor kidney recipients have deliberately chosen for a deceased donor rather than approaching a living donor, the reviewer is right that there is some literature on attitudes or motivations of kidney patients including concerns about the relationship, as described in the discussion. We have made this clearer in the introduction
(page 3 line 23 – page 4 line 8).
2. Those with psychological disorders and patients with graft loss were excluded from participation. These exclusionary criteria warrant further commentary. In particular, why were these patients and donors excluded?
Psychological disorders range from mild anxiety perhaps to those conditions that are quite debilitating – why would the former types be excluded? Also, patients who have lost their grafts would seem to be a clinically rich sample of patients to interview about changes in the donor-recipient relationship. For instance, one might expect more changes in the relationship if the graft was lost.
Answer
We excluded only those with severe psychological disorders, i.e. requiring psychiatric treatment. We have made this clearer in the methods section (page 5 lines 1-2).
The reviewer is right that those who have lost their graft may have provided rich data on relationship changes. We chose to exclude these donors and recipients in order to create homogeneous focus groups, as we felt that the graft loss may influence the discussion to a great extent (making it emotional and possibly not capturing relationship aspects relevant for most of the study population). We have made this clearer in the methods section (page 5 lines
3-6). As the aim of the study was to explore expected and experienced relationship changes,
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this study should be followed by a questionnaire sent to the entire study population to obtain quantitative estimates on what percentage of donors and recipients expected and have experienced relationship changes, as well as on differences between recipients with and without graft loss. We have added this next step specifically to the discussion (page 13 line 21
– page 14 line 2).
3. It is not entirely clear whether any of the donors and recipients who participated in the study were actual pairs. Clearly, this would provide the richest data since one could examine differences within the same dyad.
Answer
Among the participants were 7 actual pairs. We did not examine differences within these actual pairs given these small numbers. The relationship changes reported in the present study will be further investigated in a questionnaire sent to the entire study population, so that we will be able to look with more detail into disagreement within pairs in their views and motivations. We have added this to the discussion (page 13 line 21 – page 14 line 2).
4. A major study limitation is the low participation rate, which the authors comment on in the Discussion. However, there is some variability in participation rate among the three groups of participations and this warrants some comment – was this significant? How do these patient characteristics differ, if at all, from the general donor/transplant population at their institution?
Answer
The reviewer is correct that the participation rate varied between the three groups, from 31% to 50%, but this difference was not significant (p=0.22). The participants in the focus groups were representative for the total study population with respect to age, gender and time since transplantation. We have added this to the results (page 8 lines 2-4).
5. It is difficult to know if these study findings can be generalized to other transplant programs. It is a single center study conducted in The
Netherlands. Are there any unique societal, cultural, or practice issues around living donation that will make it difficult to extrapolate these findings to other centers – both in The Netherlands and beyond?
Answer
Martinez-Alarcón et al have shown that the general attitude towards living versus deceased donor kidney transplantation is different in Spain, where the majority of patients prefers to wait for a deceased donor, most likely explained by the shorter waiting time in Spain compared to the Netherlands, as well as the behavior of transplant professionals shown by
Arias that living kidney donation is not offered systematically to patients. These issues are likely to influence the extrapolation of our findings to other countries. We do not expect large differences in the attitude of patients within the Netherlands, given for instance the national waiting list, or large differences in the attitude of transplant professionals. We have added this to the discussion (page 17 lines 4-14).
6. As noted by the authors, a primary limitation of the study is that the interviews were conducted many years after donor or transplant surgery. Of course, there is nothing that can be done about this now, but the impact of decision justification processes is likely to be substantial in this context. Did the authors examine whether those more removed from surgery had more/less perceived changes in the relationship?
Answer
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Even though we have to be careful given the small numbers when stratifying by time since transplantation, it seems that particularly those with recent surgery (<1 year after transplantation) were more likely to report no changes in the relationship (p<0.01), particularly in recipients. A potential explanation for this may be that it takes some time before realizing that something has changed, particularly if the changes are subtle. Given the small numbers, we cannot make any comparisons on specific positive or negative relationship changes that are experienced, but this will be possible in our future questionnaire study. We have added this to the results (page 11 line 24 – page 12 line 1) and discussion (page 15 line
20 – page 16 line 2).
7. It is surprising that 25% of donors experienced social pressure by physicians. The authors should discuss this finding in more detail since it is substantially higher than what has previously been reported in the literature.
Answer
We agree with the reviewer that this is surprising and higher than reported in previous studies.
However, given the small numbers, we have to be careful in interpreting these estimates given that a single answer may have a considerable influence on the resulting estimate, and the fact that the focus group may have been a selective sample. On the other hand, if it were true it may possibly be explained by the fact that more subtle changes were picked up in the focus groups than in previous questionnaire studies. This is supported by a recent study of Valapour et al who asked donors to rank the extent of pressure on a 5-point scale and reported that 40% of donors felt some pressure to donate, with only 2% reporting the highest social pressure. We have added this to the discussion (page 16 line 18 – page 17 line 2).
8. Fear of donor-recipient relationship changes is noted as an impediment to pursuing living donor transplantation. The authors should discuss the clinical implications of this finding and how transplant staff can appropriately address these concerns clinically.
Answer
As mentioned in the discussion, it seems important that any unjustified fears are taken away.
This may be achieved by discussing expectations regarding changes in the relationship and their health status, as an element of standard care. If these issues are only discussed when brought up, things may be left unsaid so that the potential donor or recipient is not aware of these fears or expectations. Stories of previous recipients or donors may help in this context, as well as evidence on how many donors or recipients have actually experienced such changes. By making it part of the standard set of questions, it becomes clear that these issues are just as important as questions on medical issues and need to be considered. We have added this to the discussion (page 16 lines 8-15).
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