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Original Articles: Clinical Transplantation

Psychological Barriers for Living Kidney Donation: How to Inform the Potential Donors?

Kranenburg, Leonieke W.1,4; Zuidema, Willij C.2; Weimar, Willem2; Hilhorst, Medard T.3; IJzermans, Jan N. M.3; Passchier, Jan1; Busschbach, Jan J. V.1

Author Information
doi: 10.1097/01.tp.0000284981.83557.dc
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Abstract

On the first visit to an outpatient clinic, a considerable proportion of patients indicated for kidney transplantation are accompanied by a number of willing living donors. This positive attitude towards donation, however, is not always the norm, as other patients never bring along a living donor to the appointment. In the Netherlands, there were 675 kidney transplantations performed in 2006, of which 275 were from living donors (40%). Patients without a living donor have to wait an average of 4 years before a deceased donor kidney transplant becomes available (1). As they will be dependent on dialysis treatment during this time, they are at risk of a lowered quality of life and increased morbidity and mortality (2, 3). Given this patient burden, we decided to study the barriers to living kidney donation, and to investigate whether and how these barriers can be overcome.

The present study focused on the knowledge and acceptance of living kidney donation in the group that was eligible for living kidney donation and transplantation: the patients on the transplant waiting list and the persons in their close environment (i.e., the potential donors). By investigating these groups, we hoped to explore whether barriers to living kidney donation can be overcome. We formulated two hypotheses. The first hypothesis was that the patient might be keeping potential donors away from donation. Evidence for this hypothesis was found by Gordon, who showed that patients were more concerned with the potential donors' well being rather than their own; they did not want donors to “suffer for them” (4). Patients also seemed to worry about their relationship with potential donors and were especially concerned that they would feel indebted to the donor (5, 6). In other cases, where patients were willing to accept an offer from a potential donor, they were reluctant to discuss the topic of live kidney donation with their potential donors (7). A second hypothesis was that it was not the patients who were reluctant to pursue the living donation option, but the potential donors who refused to donate. Remarkably, substantial research into the motivation of these presumed unwilling potential donors is lacking. A study by Hiller et al. among living kidney donors listed the common concerns of donors: the effect of donation on future health, absences at work, the ability to return to doing the same activities as previously, and pain. They suggested that the same issues might apply to potential donors who are reluctant to commit to living kidney donation (8). A study by Stothers et al. has shown that there was a lack of information among potential living kidney donors (9). However, they wondered whether improvement of knowledge about living kidney donation would lead to increased donation rates, because most donors did not appear to deliberate over organ donation before making a commitment. Furthermore, factors including gender and ethnicity were associated with the attitude of potential donors towards living kidney donation (10, 11).

MATERIALS AND METHODS

Patients

All patients seen in our transplant outpatient clinic without a living donor in the period from January 2004 until January 2006 were asked to participate in the study. All patients had received our center's information brochure and a video about living kidney donation. We included patients who came for their annual appointment with the transplant nephrologist as well as those who were just referred. Most of the patients who were just referred (75%) already were on dialysis. It was after their second or third appointment that it became clear they would not pursue transplantation with a living donor. Only then were they approached for participation in our study. Patients were given written information on the aim of the present study. If patients were willing to participate, they had to return a reply card. Subsequently, an appointment was made for an in-depth interview on the topic of living kidney donation. During this interview, we asked the patients for permission to approach one or more persons in their personal environment who could be considered as potential donors. Patients were free in naming the number of potential donors; there was no maximum. These potential donors received written information and if they agreed to participate, an appointment for an in depth-interview was made. One week after the interview, we phoned all respondents to ask if they had any questions, remarks, or needs as a result of the interview.

For comparison, we included a group consisting of patients and their donors who had undergone the medical screening for living kidney donation and were to undergo surgery within 3 months, in the period from July 2004 to March 2006. The physician asked these donors and recipients whether they would allow the researchers to contact them and explain the study. If they agreed, researchers contacted them to provide further information. After informed consent was given, they were interviewed regarding living kidney donation.

Respondents were divided into four groups. The first two groups—patients without a living donor (study patients) and the people in their environment (i.e., their potential donors: study donors)—collectively are referred to as the study group. The other two groups—patients with a living donor (comparison patients) and their living donors (comparison donors)—collectively are referred to as the comparison group. All respondents were interviewed at their place of preference, either in the hospital or at home. Most respondents preferred to be interviewed in their homes. Respondents who had insufficiently mastered the Dutch language were interviewed with the help of an interpreter and all respondents signed the informed consent forms. The Institutional Review Board of the Erasmus University Medical Centre approved this study. One of the Board's comments concerned an unintentional, but nevertheless possible, influence of the present investigation on the behavior of patients and potential donors. To investigate this, we performed a follow-up of the study group in 2007.

Materials

All respondents were interviewed by means of a structured interview. The interviews were structured around several topics that have been suggested in the literature as important determinants of the willingness to undergo living kidney donation/transplantation. These topics were: sociodemographic and medical variables; knowledge and information; risk perception; willingness to pursue living kidney donation; communication with the specialist and the potential donors; and expectations regarding the personal relationship between patient and donor. Table 1 summarizes the interview topics, together with a number of examples of questions for that topic. Most questions were asked in multiple-choice format or in the format of a Visual Analogue Scale (VAS). In all situations, respondents were asked to comment on their specific answer. The interviewer summarized and wrote down their explanations. The interviewer and the respondents both verified the written summaries for accuracy and completeness. This way of interviewing offered the opportunity to gain in-depth information about underlying thinking and associations that were motivating respondents' choice for a specific response.

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TABLE 1:
Interview topics and example questions

Statistics

We used SPSS 11 for analyzing the data. To compare the study group and the comparison group and to compare donors and recipients, we used the Mann-Whitney U test and test, both exact testing; α was set at 0.05. We systematically compared study patients to comparison patients; study donors to comparison donors; study patients to the people in their environment, the study donors; and comparison patients to comparison donors. Results of these comparisons are reported only if they were statistically significant.

RESULTS

Inclusion of Respondents

We approached 158 patients on the waiting list for transplantation. Of those, 91 were willing to participate in our study. The main reasons for not wanting to participate were the emotional burden of talking about the topic of living kidney donation or lack of motivation in participating in a study. There were no statistically significant differences between the included (n=91) and nonincluded patients (n=67) with respect to gender, age, and birth country (P=0.33; P=0.30; P=0.75). Of the patients included in our study, 59 of 91 (65%) named one or more potential donors who we could approach for this study. In total, 97 potential donors were nominated and eventually 53 were found who were willing to participate. The inclusion rate in the comparison group was higher: 53 of the 60 patients and 51 of the 60 living kidney donors we approached were willing to participate. The main reason for nonparticipation in the comparison group was “lack of interest in scientific psychological research.” Respondents' social and medical characteristics are given in Table 2.

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TABLE 2:
Respondent characteristics

Willingness to Pursue Living Kidney Donation

We asked all respondents in our study group to give us their personal opinion on pursuing living kidney donation, whether they were positive or negative about this treatment option (the exact question is phrased in Table 1). Of the study patients, 71 of 91 (78%) were willing to accept the offer of a living kidney from someone they knew (response category 1: very positive or 2: positive); 3 of 91 (3%) were in doubt; and 17 of 91 (18%) were negative about accepting a kidney from someone they knew (response category 3: negative or 4: very negative). We also asked the study donors how they felt about living kidney donation and whether they would be willing to donate. We found that 21 of 53 (40%) of the study donors were negative about being a living kidney donor. The other 60% varied in their reasoning from being willing to consider the idea but had serious hesitations to being positive about being a living donor.

Reasons for Not Pursuing Living Kidney Donation

All respondents in the study group were asked to explain their reasons for not pursuing living kidney donation. They frequently gave more than one explanation. At a later stage during the interview, they were given a list that stated possible reasons for not pursuing living kidney donation (Table 1). They had to select the reasons they considered applicable to their personal situations and viewpoints. The reasons they selected were consistent with the explanations they provided spontaneously at an earlier stage during the interview. Study patients, who were in principle positive about living kidney donation, most often selected the next two reasons (both reasons were selected by 39 of 71 of the patients). The first reason was: “I would be willing to accept a kidney from someone I know, but only if the donor offers.” Study patients explained this by stating that they wanted to be sure that the offer was made completely voluntarily. Volunteering was perceived as a condition for proceeding with the donor-recipient relationship because the study patients said that they would feel more reassured that they were not at fault if the decision to donate had been made voluntarily by the donor. This issue is related to the topic of donor-recipient relationship, discussed below. Another reason for not asking was the fear of receiving a negative response. This was viewed as being a painful experience and/or compromising the relationship as the following quotation shows: “If I ask they may get angry, or try to avoid me. I do not want that, I really need them.” The second most often selected reason was: “I would be willing to accept a kidney from someone I know, but nobody wants to donate (because they fear the operation, they fear health problems after donation, or because our personal bond is not strong enough).”

Study patients who were in principle negative about living kidney donation most often selected “I would probably not accept a kidney from someone I know, because I would fear for the donor's health after donation” (selected by 13 of 17 patients) and “… if something adverse happens to the donor as a consequence of the donation, I would feel guilty” (selected by 11 of 17 patients).

Study donors were most likely to select: “I would probably not donate, because I fear health problems as a consequence of donation” (selected by 18 of 53 of the study donors), “I would probably not donate, because I dread the operation” (selected by 16 of 53 of the study donors), or “I would probably not donate, because I have to take care of others (children, partner), and therefore I want to avoid any risk” (selected by 15 of 53 of the study donors). Fourth and fifth study donors also selected “I would donate, but the patient refuses my offer” (14 of 53) and “I may donate, but I lack information on what living kidney donation comprises” (12 of 53).

Knowledge and Information

We asked all respondents whether they considered themselves well informed in regard to living kidney donation (Table 1). In all, 65 of 91 (71%) of the study patients and 27 of 53 (51%) of the study donors considered themselves reasonably or well informed. In comparison, 45 of 53 (85%) of the comparison patients and 39 of 51 (77%) of the comparison donors considered themselves well informed about living kidney donation from the moment they decided to continue living kidney donation. Respondents mentioned a variety of information sources, such as the Internet, health care professionals, and our center's informational brochure and video. Study donors considered themselves less often well informed compared to all three other subgroups (P=0.006 for study patients, P<0.001 for comparison patients, P=0.007 for comparison donors). With regard to knowledge, nearly all 248 respondents knew that a living kidney donor did not necessarily need to be genetically related to the recipient. Only five thought the donor should be genetically related. Furthermore, we asked respondents whether they thought a deceased donor kidney and a living kidney would differ in quality. Study patients were less likely to know about the superior quality of a living kidney, compared to comparison patients (P<0.001). The same was true for study donors as compared to comparison donors (P=0.016).

Risk Perception

All respondents were asked: “How do you estimate the chance that the donor will develop severe complications (such as having to undergo dialysis him/herself) as a consequence of the donation procedure?” Respondents had to indicate where they estimated this by marking on a Visual Analogue Scale ranging from “very small chance” (0) to “very high chance” (100). Median estimations were: study patients, 23; study donors, 24; comparison patients, 13; and comparison donors, 16. We found statistically significant differences between study patients and comparison patients (P=0.024) and between study donors and comparison donors (P=0.049). To further explore risk perception with regard to patient risks, we asked: “Imagine 100 patients on dialysis. None of them receives a transplant. How many of them, do you think, will be alive in 4 years' time?” Median estimates were: study patients, 60%; study donors, 65%; comparison patients, 70%; and comparison donors, 75%. Differences between subgroups were not statistically significant.

Communication

A total of 73 of 91 (80%) of the study patients stated that they would not (57 of 91) or probably would not (16 of 91) approach and ask a potential donor themselves (Table 1). To quote two patients: “I would not dare. You do fear an answer that might hurt you. You do not know what that answer will be, that makes it difficult to ask” and “We did not really discuss it. It is not something we talk about.” All but three comparison patients did not initiate serious a conversation, but were offered the kidney by the donor. This is consistent with the findings among the comparison donors. All but two of the comparison donors stated that they were the ones who came forward and offered the kidney. We also investigated how respondents would appreciate the “Oslo experience” (12) (Table 1). After this procedure, the physician asks the patients for their permission to approach their potential donors to invite them for a conversation on living kidney donation. In this way, it is not the patient but the physician who approaches and discusses living kidney donation with potential donors. Study patients and study donors were more likely to approve of this method than comparison patients and comparison donors. Differences between study patients and comparison patients were statistically significant (P=0.035), but not between study donors and comparison donors (P=0.085). Proponents of this method made comments that stressed the lightening of the patient's situation: “I think it is a good idea, it saves the patient a difficult task and you can speak more freely to a doctor, it is less emotional.” Opponents of this method were more likely to stress the danger of donor coercion: “I do not know, maybe they [the potential donors] would not dare to say no anymore.” Results are summarized in Figure 1.

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FIGURE 1.:
Respondents' appreciation of the Norwegian method, where the physician has an active role in finding the patient a living kidney donor (12).

Donor-Recipient Relationship

Study patients were less often sure that a donation would have a positive impact on the donor-recipient relationship compared to the persons in their environment, the study donors (P=0.002), and compared to the comparison patients (P=0.002). All respondents were asked whether they agreed with the statement: “If you accept someone's offer of a living kidney, you owe this person forever.” Respondents had to mark on a Visual Analogue Scale ranging from “totally disagree” (0) to “totally agree” (100) how they felt about this statement (Table 1). Median scores were: study patients, 27.5; study donors, 0.0; comparison patients, 17.5; and comparison donors, 1.0. There were statistically significant differences between study patients and study donors (P<0.001) and between comparison patients and comparison donors (P=0.049).

Study Patients at Follow-Up

Seven patients had died or were removed form the waiting list, 35 patients are still waiting, while 40 patients had received a deceased donor kidney. Nine of the patients had received a living donor kidney, but only one from a study donor. Four other study donors contacted our center, but did not donate in the end (Table 3). Given these low numbers, we tend to interpret these findings as if our study had not had a major influence on the behavior of patients and potential donors in the study group.

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TABLE 3:
Study group: follow-up in June 2007

DISCUSSION

This study aimed to investigate the discriminatory variables between patients who pursue living kidney donation and patients who do not. For various variables, we found statistically significant differences between those two groups. Study patients were less likely to know about the superior graft survival of a living kidney donor; were more likely to think that the donation procedure would negatively impact on the donor's health; were more likely to be supportive of a more leading role of the physician (the “Norwegian approach”); were less often sure that a donation would have a positive impact on the donor-recipient relationship; and were more likely to agree with the statement of “owing the donor.” In addition, study donors differed from the comparison donors with respect to the following variables: study donors were less likely to feel well-informed about living kidney donation; knew less often about the superior graft survival of a living kidney donor; and were more likely to think that the donation procedure would negatively impact the donor's health. Considering this large number of statistically significant findings, the question arises as to which of these findings is most relevant. If one wants to overcome psychological barriers for living kidney donation, what interventions would be helpful? Below we will discuss our results within the framework of possible interventions. During conversations with our patient respondents, we found that the large majority of patients were willing to accept a living kidney donor's offer. These findings are consistent with earlier findings (5), and support the second hypothesis described in the introduction: it is not that patients are reluctant to pursue the living donation option, but more that they (presume) unwillingness at the side of potential donors.

One common finding arising from our conversations with patient respondents was their cautious attitude towards finding or “arranging” a living donor. Surprisingly, this was almost the only variable where study patients did not differ from comparison patients. Both patients groups were waiting for the donor to take the initiative. This suggests that deciding whether to pursue living kidney donation is dependent on whether a kidney is being offered (or not). Patients may cautiously try to talk about their illness and need for a transplant in general, but they appeared almost never to ask directly for a donation. In addition, we found that study donors were more often poor informed compared to the other groups. Study donors may be poor informed, because patients are reluctant to share their information about living kidney donation with the potential donors. Patients may feel that even sharing information, or inviting their potential donors to an information meeting on live kidney donation, is a veiled way of asking for a kidney. In that case, it is a challenge for the transplant professionals to find alternative ways to inform the potential donors. There are two possibilities. One option would be to adopt the more direct Norwegian approach, where the physician takes a leading role (12). Data from the study group showed that there was support for this option. Respondents appreciated that in this way patients were relieved from the difficult task to ask for a kidney. Furthermore, the proponents of this approach mentioned that potential donors could speak more freely (or refuse) to a doctor than to the patient. Moreover, the doctor is better capable to answer the questions of the potential donors. There were also negative comments from the study group respondents, in that they feared donor coercion. They were concerned that the donor would be afraid to refuse. This was also the main objection found in the comparison group, where respondents were generally negative about adopting the Norwegian approach. However, it may have been easier for the comparison patients to answer in a socially desirable way, because they were in the lucky position of being offered a kidney without hospital assistance. Also from the side of the comparison donors, a feeling of pride that they offered without professional involvement may exist. Furthermore, if patients really fear for donor coercion, they are free to refuse the physician's request for approaching their family members.

A second option is described by Rodrigue et al. (13). In their study, health care educators visited patients and their potential donors at their homes, and informed them about living kidney donation. In this way, various aspects of living kidney donation could be discussed in a confidential setting. Their results show that a home-based educational program is effective in increasing the number of living kidney donations. However, the home-based educational program was carried out in a study design, so although results are promising, we do not know what the effectiveness of this approach would be if it were carried out in a real-life situation. Instead of this group approach, one could also consider an individual approach where a counselor discusses the patient's feelings about living kidney donation, tries to identify the potential donors for this patient, and plans how to approach and inform them about living kidney donation. Taking into account the efforts we make in training health professionals to ask family members for permission to procure deceased donor organs, we could—or perhaps should—also invest in educating, training, and assisting patients to make a request for living donation (13, 14). The patient's physician would not necessarily be the one to fulfill this active role. Other counselors may be more independent or may have more expertise in handling social and psychological issues (13, 14).

In conclusion, we think that a more active role by the transplant center should be considered. The majority of patients on the waiting list are willing to accept a living kidney donor, but are reluctant to discuss the issue of living donation with their potential donors. As both the health and the personal relationships of the patients are at stake, they may profit from professional assistance to find a way of dealing with this complex situation that best suits their personal needs.

REFERENCES

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Keywords:

Living kidney donation; Psychology; Decision-making; Waiting list

© 2007 Lippincott Williams & Wilkins, Inc.