Unspecified donation in kidney exchange: when to end the chain

This paper studies participation of unspecified donors in kidney exchange through simultaneous domino paired donation (DPD) and non-simultaneous extended altruistic donor (NEAD) chains. It extends existing research by investigating the termination of chains, the possibility of transplantation across the blood type barrier, and the impact of incentives in multi-center exchanges. Furthermore, it looks into the effect of various configuration parameters such as the time interval between exchanges. Our analysis is based on a simulation study that uses data of all 438 patient-donor pairs and 109 unspecified donors who were screened at Dutch transplant centers between 2003 and 2011. Because multi-center coordination may raise incentive issues, special attention is paid to individually rational implementation. We find that chains are best terminated when no further segment is part of an optimal exchange within 3 months. Transplantation across the blood type barrier allows for longer continuation of chains, more transplants and more equity among patient groups. NEAD chains perform slightly better than DPD chains, provided that the renege rate is sufficiently low. Additional substantial gains are due to national individually rational coordination. Particularly highly sensitized and blood type O patients benefit. Appropriate timing of ex-changes can further improve these results

Multisystemic engagement & nephrology based educational intervention: A randomized controlled trial protocol on the kidney team at home-study

Background: Living donor kidney transplantation (LDKT) is the most successful form of renal replacement therapy in terms of wait time and survival rates. However, we observed a significant inequality in the number of LDKT performed between the Dutch and the non-Dutch patients. The objective of this study is to adapt, implement and test an educational home-based intervention to contribute to the reduction of this inequality. Our aim is to establish this through guided communication together with the social network of the patients in an attempt that well-informed decisions regarding renal replacement therapy can be made: Multisystemic Engagement & Nephrology. This manuscript is a detailed description of the Kidney Team At Home-study protocol. Methods and design. All patients (>18 yrs) that are referred to the pre-transplantation outpatient clinic are eligible to participate in the study. Patients will be randomly assigned to either an experimental or a control group. The control group will continue to receive standard care. The experimental group will receive standard care plus a home-based educational intervention. The intervention consists of two sessions at the patient's home, an initial session with the patient and a second session for which individuals from their social network are invited to take part. Based on the literature and behavioural change theories we hypothesize that reducing hurdles in knowledge, risk perception, subjective norm, self-efficacy, and communication contribute to well-informed decision making and reducing inequality in accessing LDKT programs. A change in these factors is consequently our primary outcome-measure. Based on power calculations, we aim to include 160 patients over a period of two years. Discussion. If we are able to show that this home-based group educational intervention contributes to 1) achieving well-informed decision regarding treatment and 2) reducing the inequality in LDKT, the quality of life of patients will be improved while healthcare costs are reduced. As the intervention is investigated in a random heterogeneous patient group in daily practice, the transfer to clinical practice in other kidney transplant centers should be relatively easy

Exploring Knowledge About Dialysis, Transplantation, and Living Donation Among Patients and Their Living Kidney Donors

Background: In order to make a well-considered decision and give informed consent about renal replacement therapy, potential living kidney donors and recipients should have sufficient understanding of the options and risks. Purpose: We aimed to explore knowledge about Dialysis & Transplantation (DT) and Living Donation (LD) among prospective living kidney donors and recipients. Methods: Eighty-five donors and 81 recipients completed the Rotterdam Renal Replacement Knowledge-Test (R3K-T) 1 day before surgery. The questionnaire was available in various languages. Results: Recipients knew significantly more about DT than donors (p < 0.001); donors knew more about LD than recipients (p < 0.001). A minority of donors (15 %) and recipients (17 %) had a score that was comparable to the knowledge level of the naïve general population. Recipients and donors knew less about DT and LD if their native language was not Dutch. In addition, recipients knew less about DT if they were undergoing pre-emptive transplantation. Conclusions: We conclude that recipients and donors retain different information. The decision to undergo living donation appears to be not always based on full knowledge of the risks. We recommend that professionals assess knowledge of prospective donors and recipients during the education process using the R3K-T, and extra attention is required for non-native speakers

Raising awareness of unspecified living kidney donation: An ELPAT

Background: Living donor kidney transplantation (LDKT) is the preferred treatment for patients with end-stage renal disease and unspecified living kidney donation is morally justified. Despite the excellent outcomes of LDKT, unspecified kidney donation (UKD) is limited to a minority of European countries due to legal constraints and moral objections. Consequently, there are significant variations in practice and approach between countries and the contribution of UKD is undervalued. Where UKD is accepted as routine, an increasing number of patients in the kidney exchange programme are successfully transplanted when a 'chain' of transplants is triggered by a single unspecified donor. By expanding the shared living donor pool, the benefit of LDKT is extended to patients who do not have their own living donor because a recipient on the national transplant list always completes the chain. Is there a moral imperative to increase the scope of UKD and how could this be achieved? Methods: An examination of the literature and individual country practices was performed to identify the limitations on UKD in Europe and recommend strategies to increase transplant opportunities. Results: Primary limitations to UKD, key players and their roles and responsibilities were identified. Conclusions: Raising awareness to encourage the public to volunteer to donate is appropriate and desirable to increase UKD. Recommendations are made to provide a framework for increasing awareness and engagement in UKD. The public, healthcare professionals, policy makers and society and religious leaders have a role to play in creating an environment for change

Development of the Rotterdam Renal Replacement Knowledge-Test (R3K-T)

Introduction: There is currently a lack of validated or standardized measures to test the level of knowledge among renal patients regarding kidney disease and available treatment options. We conducted a pilot study to develop a questionnaire measuring knowledge of kidney disease, dialysis and transplantation options. The main aim of this study was to develop such an instrument for further use in research and practice. Method: An initial 61 item pool was generating by searching the literature and consulting experts in this area for additional items. This questionnaire was completed by 182 renal disease patients from 4 dialysis centers in the Rotterdam municipality. A factor analysis was conducted using the maximum likelihood factor method followed by direct oblimin rotation to obtain variance explained by each factor. Questions that loaded ≥ .30 on a factor were included. Results: Twenty-seven patients (24%) were in the pre-RRT phase, 60 (54%) were undergoing haemodialysis, 16 (14%) were undergoing peritoneal dialysis, and 9 (8%) had a graft failure. Forty (36%) were female and 72 (64%) were male. Age range 19-87 (median = 59). A factor analys

Public survey of financial incentives for kidney donation

Background. One of the most fiercely debated strategies to increase the number of kidneys for transplantation is the introduction of financial incentives. As the success of such strategy largely depends on public support, we performed a public survey on this topic. Methods. We developed a questionnaire on financial incentives for living kidney donation. We investigated the public opinion on two different fixed compensations: either life-long health insurance compensation or €25 000. Furthermore, we investigated public preferences on the practical implementation: either the patient seeks a donor or the donor registers for donation at an independent institute. For all examples, health insurance companies would cover costs of treatment. TNS NIPO, a professional organization for market research, sent the survey to a response panel that is made representative for the general population. Results. Five hundred fifty respondents (M/F: 60/40; median age: 46) filled out the questionnaire. Forty-six percent considered the situation wherein health insurance companies would introduce financial incentives to increase the number of living kidney donors undesirable (26% undesirable; 20% very undesirable), compared to 25% who perceived this as desirable (20% desirable; 5% very desirable). The option wherein the donor registers at an independent institute to donate to a patient on the list and in turn receives life-long health insurance compensation was chosen as most favourable. Of all respondents, 5.5% stated that there was a (very) great chance that they would donate a kidney in order to get compensation if such system were to be reality. Conclusion. Although almost half of the respondents (46%) were reluctant towards introducing a system with fixed compensation to increase the number of living kidney donors, still 25% of the general public reacted positively

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.Copyrigh

Predicting mental health after living kidney donation: The importance of psychological factors

Objectives: Living donor kidney transplantation offers advantages to the patient, however involves risks to the donor. To optimize donors' mental health after donation, we studied the influence of psychological factors on this outcome. Potential predictors were based on models of Lazarus () and Ursin and Eriksen () that describe predictors of mental health mediated by stress. Design: Prospective design. Methods: Living kidney donors (n = 151) were interviewed before donation and completed questionnaires 2.5 months before and 3 and 12 months post-donation. Using multilevel regression models, we examined whether appraisals, expectations, knowledge, social support, coping, life events, and sociodemographic characteristics predicted psychological symptoms and well-being and whether these relationships were mediated by stress. Results: A greater increase in psychological symptoms over time was found among donors without a partner. Younger age, lack of social support, expectations of interpersonal benefit, lower appraisals of manageability, and an avoidant coping style were related to more psychological symptoms at all time points. The latter three were mediated by stress. No religious affiliation, unemployment, history of psychological problems, less social support, expectations of negative health consequences, and less positive appraisals were related to lower well-being at all time points. Conclusions: This stud

Mental health among living kidney donors: A prospective comparison with matched controls from the general population

The impact of living kidney donation on donors' mental health has not been sufficiently nor comprehensively studied. Earlier studies demonstrated that mental health did not change in the majority of donors, however they often lacked a suitable control group and/or had other methodological limitations. Consequently, it remains unclear whether changes in mental health found among a minority of donors reflect normal fluctuations. In this study we matched 135 donors with individuals from the general Dutch population on gender and baseline mental health and compared changes in mental health over time. Mental health was measured using the Brief Symptom Inventory and Mental Health Continuum Short Form. Primary analyses compared baseline and 6 months follow-up. Secondary analyses compared baseline and 9 (controls) or 15 months (donors) follow-up. Primary multilevel regression analyses showed that there was no change in psychological complaints (p = 0.20) and wellbeing (p = 0.10) over time and donors and controls did not differ from one another in changes in psychological complaints (p = 0.48) and wellbeing (p = 0.85). Secondary analyses also revealed no difference in changes between the groups. We concluded that changes in mental health in the short term after donation do not significantly differ from normal fluctuations found in the Dutch general population