W. Zuidema

Psychological barriers for living kidney donation: how to inform the potential donors?

Background. This is the first large-scale interview study carried out in patients and potential donors who seem unwilling or unable to pursue living kidney donation. By investigating these groups, we explored whether further expansion of the living kidney donation program is feasible. Methods. We interviewed 91 patients on the waiting list for a kidney transplant who did not pursue living kidney donation and their potential donors (n=53). We also included a comparison group. All respondents underwent an in-depth interview by a psychologist about topics that could influence their willingness to pursue living kidney donation. Results. A total of 78% of the patients on the waiting list were willing to accept the offer of a living donor. The main reason for not pursuing living kidney donation was reluctance to discuss the issue with the potential donors. This was also found in the comparison group. Both groups indicated that if there was no donor offer, they tended to interpret this as a refusal to donate. This interpretation not always holds: more than one third (19 of 53) of the potential donors were open to consider themselves as a potential donor. On the other hand, a comparably sized group of potential donors (21 of 53) was reluctant about donation. The main reason for donor reluctance was fear for their health after donation. Conclusion. The majority of patients on the waiting list are willing to accept a living kidney donor, but adopt an awaiting attitude towards their potential donors. Offering those patients professional assistance should be considered.

Successful expansion of the living donor pool by alternative living donation programs.

Between January 2000 and December 2007, 786 potential recipients and 1059 potential donors attended our pretransplant unit with the request for a living‐donor renal transplant procedure. The recipients brought one potential donor in 77.2% and two or more donors in 22.8% of cases. In the regular living donor program, a compatible donor was found for 467 recipients. Without considering alternative donation, 579 donors would have been refused. Alternative living donation programs led to 114 compatible combinations: kidney‐exchange program (35), ABO‐incompatible donation (25), anonymous donation (37) and domino‐paired anonymous donation (17). Together, the 114 alternative program donations and the 467 regular living donations led to 581 living donor transplantations (24.4% increase). Eventually for 54.9% (581/1059) of our donors, a compatible combination was found. Donor–recipient incompatibility comprised 19.4% (89/458) in the final refused population, which is 8.8% of the potential donor–recipient couples. Without considering alternative donation, 30.1% (174/579) of the refused donors would have been refused on incompatibility and 6.4% (37/579) because they were anonymous. This is 20% of the potential donor population (211/1059). The implementation of alternative living donation programs led to a significant increase in the number of transplantations, while transplantations via the direct donation program steadily increased.

Avoiding the issue: Patients' (non)communication with potential living kidney donors

OBJECTIVE Kidney transplantation with a living donor has proved to be an effective solution for kidney patients on the waiting list for transplantation. Nevertheless, it may be difficult to find a living kidney donor. The purpose of this explorative study is to investigate how kidney transplant candidates may, or may not, find a living donor in the Netherlands. METHODS We compared a group of 42 patients who did not find a living donor with a group of 42 patients who did, using semi-structured interviews. RESULTS We found that, although almost all patients recognized the advantages of living kidney donation and were willing to accept the offer of a living kidney donor, many found it very difficult to ask a potential donor directly. This was true for both groups. CONCLUSION Patients may gain from professional support to deal with this situation in ways that balance their medical needs and their personal relationships. PRACTICE IMPLICATIONS Support programs should be developed to assist patients in developing strategies for discussing living kidney donation with potential donors.

Living organ donation practices in Europe – results from an online survey

In Europe, living organ donation (LOD) is increasingly accepted as a valuable solution to overcome the organ shortage. However, considerable differences exist between European countries regarding frequency, practices and acceptance of donor–recipient relations. As a response, the Coordination Action project ‘Living Organ Donation in Europe’ (www.eulod.eu), funded by the Seventh Framework Programme of the European Commission, was initiated. Transplant professionals from 331 European kidney and liver transplant centres were invited to complete an online survey on living kidney donation (LKD) and living liver donation (LLD). In total, 113 kidney transplant centres from 40 countries and 39 liver transplant centres from 24 countries responded. 96.5% and 71.8% performed LKD and LLD respectively. The content of the medical screening of donors was similar, but criteria for donor acceptance varied. Few absolute contraindications for donation existed. The reimbursement policies diverged and the majority of the donors did not get reimbursed for their income loss during recovery. Large discrepancies were found between geographical European regions (the Eastern, the Mediterranean and the North‐Western). As a result of this survey we suggest several recommendations to improve quality and safety of LOD in Europe.

Cross-border quest: the reality and legality of transplant tourism.

Background. Transplant tourism is a phenomenon where patients travel abroad to purchase organs for transplants. This paper presents the results of a fieldwork study by describing the experiences of Dutch transplant professionals confronted by patients who allegedly purchased kidney transplants abroad. Second, it addresses the legal definition and prohibition of transplant tourism under national and international law. The final part addresses the legal implications of transplant tourism for patients and physicians. Methods. The study involved seventeen interviews among transplant physicians, transplant coordinators and policy-experts and a review of national and international legislation that prohibit transplant tourism. Results. All Dutch transplant centers are confronted with patients who undergo transplants abroad. The estimated total number is four per year. Transplant tourism is not explicitly defined under national and international law. While the purchase of organs is almost universally prohibited, transplant tourism is hardly punishable because national laws generally do not apply to crimes committed abroad. Moreover, the purchase of organs (abroad) is almost impossible to prove. Conclusions. Transplant tourism is a legally complex phenomenon that warrants closer research and dialogue. The legal rights and obligations of patients and physicians confronted with transplant tourism should be clarified.

New Classification of ELPAT for Living Organ Donation

In the literature, varying terminology for living organ donation can be found. However, there seems to be a need for a new classification to avoid confusion. Therefore, we assessed existing terminology in the light of current living organ donation practices and suggest a more straightforward classification. We propose to concentrate on the degree of specificity with which donors identify intended recipients and to subsequently verify whether the donation to these recipients occurs directly or indirectly. According to this approach, one could distinguish between “specified” and “unspecified” donation. Within specified donation, a distinction can be made between “direct” and “indirect” donation.

Altruistic Donor Triggered Domino-Paired Kidney Donation for Unsuccessful Couples from the Kidney-Exchange Program

Between January 2000 and July 2009, 132 individuals inquired about altruistic kidney donation to strangers. These donors were willing to donate to genetically and emotionally unrelated patients. Some altruistic donors wished to donate to a specific person, but most wished to donate anonymously. In domino‐paired donation, the altruistic donor donates to the recipient of an incompatible couple; the donor of that couple (domino‐donor) donates to another couple or to the waiting list. In contrast to kidney‐exchange donation where bilateral matching of couples is required, recipient and donor matching are unlinked in domino‐paired donation. This facilitates matching for unsuccessful couples from the kidney‐exchange program where blood type O prevails in recipients and is under‐represented in donors. Fifty‐one altruistic donors (39%) donated their kidney and 35 domino‐donors were involved. There were 29 domino procedures, 24 with 1 altruistic donor and 1 domino‐donor, 5 with more domino‐donors. Eighty‐six transplantations were performed. Donor and recipient blood type distribution in the couples limited allocation to blood type non‐O waiting list patients. The success rate of domino‐paired donation is dependent on the composition of the pool of incompatible pairs, but it offers opportunities for difficult to match pairs that were unsuccessful in the kidney‐exchange program.

One donor, two transplants: willingness to participate in altruistically unbalanced exchange donation

Kidney exchange donation programs offer a good solution to help patients with a willing, but incompatible living kidney donor. Literature shows that blood type O patients are less likely to be selected for transplantation within a living exchange donation program. ‘Altruistically unbalanced donation’ could help these blood type O patients: one donor‐recipient pair is incompatible (e.g. A‐donor > O‐recipient) and the other pair is compatible, but not identical (e.g. O‐donor > A‐recipient). Exchanging these kidneys would result in two compatible living donor kidney transplants. We studied whether compatible pairs would be willing to participate in such procedure. We included 96 living kidney donors and recipients in our study. These donors and recipients could be divided into two groups: (i) donors and their direct recipients (n = 48), and (ii) paired exchange donors and their intended recipients (n = 48). All were asked whether they would be willing to participate in altruistically unbalanced exchange donation, as long as direct donation was also an option. We found no group differences. We found that one third of the donors and recipients are willing to participate in altruistically unbalanced kidney exchanges. Therefore this form of donation may be a feasible addition to already existing living kidney exchange programs.

Psychologic functioning of unspecified anonymous living kidney donors before and after donation.

Background There has been discussion regarding the psychologic functioning of living donors who donate their kidney to an unrelated and unknown patient (“unspecified living donors”). This is the first prospective study to investigate group- and individual-level changes in psychologic functioning among a large group of unspecified donors. Methods Forty-nine medically and psychologically screened unspecified living kidney donors completed the Symptom Checklist before and after donation. Results Group-level analysis showed that overall psychologic symptoms increased after donation (P=0.007); the means remained within the average range of the normal population. Individual-level analysis showed that 33 donors showed no statistically significant change, 3 donors showed a statistically significant decrease, and 13 donors showed a statistically significant increase in psychologic symptoms. Two of the latter donors showed a clinically significant increase. Conclusions We found more increases in psychologic symptoms than decreases, particularly if follow-up time was longer. However, for almost all donors, these increases were not clinically significant and the clinically significant changes found are comparable with natural fluctuations in psychologic symptoms in the general population. Possibly, the donors underreported their psychologic symptoms before donation to pass the screening. Due to the low level of predonation symptoms reported, regression to the mean could also explain the results. Although we found that changes were not associated with donation-related factors, it is possible that other donation-related factors or other life events not measured have an influence on psychologic functioning. Therefore, further research is needed to investigate whether the fluctuations are related to the donation process.

Ethnically diverse populations and their participation in living kidney donation programs

Background. The number of living donor kidney transplantations increases steeply in Europeans, whereas the non-Europeans are dependent on deceased donor transplantations. We wondered whether a low attendance or a high decline of potential non-European donors could explain this difference. Methods. This retrospective study includes all 1059 potential living kidney donors who attended our pretransplant clinic between 2000 and 2007. Potential donors were divided according to eight countries of origin: African, Dutch Antillean, European, Indonesian, Moroccan, Surinamese, Turkish, and various countries. In addition to direct living donation, alternative living donation programs are operational in our center: kidney exchange, domino paired, ABO incompatible, and anonymous donation. Results. European donors predominated in both the potential (79%) and the actual donor populations (85%). Actual donors comprised 39% of non-European and 59% of the European potential donors (P<0.001). Participation in alternative donation programs is significantly less among non-European donors in comparison with European donors (3.6% vs. 12.6%, P<0.001). In all non-European populations, genetically related donors predominated, whereas genetically related and unrelated donors were equally represented in the European potential donor population (P<0.001). Partners were under-represented in all non-European populations (P<0.001). The attitude and behavior of non-Europeans with the longest duration of stay in the Netherlands were closest to that of the Europeans. The population with the shortest stay differed the most. This could possibly be attributed to integration. Conclusion. There are less non-European donors than expected based on the population composition. Living donor characteristics are different between Europeans and non-Europeans. The reasons for the difference deserve investigation.