Lotte Timmerman

Predonation psychosocial evaluation of living kidney and liver donor candidates: A systematic literature review

Evaluating a persons suitability for living organ donation is crucial, consisting not only of a medical but also of a thorough psychosocial screening. We performed a systematic literature review of guidelines, consensus statements, and protocols on the content and process of psychosocial screening of living kidney and liver donor candidates. We searched PubMed, Embase, CINAHL, and PsycINFO until June 22, 2011, following the PRISMA guidelines, complemented by scrutinizing guidelines databases and references of identified publications. Thirty‐four publications were identified, including seven guidelines, six consensus statements, and 21 protocols or programs. Guidelines and consensus statements were inconsistent and lacked concreteness for both their content and process, possibly explaining the observed variability in center‐specific evaluation protocols and programs. Overall, recommended screening criteria are not evidence‐based and an operational definition of the concept “psychosocial” is missing, causing heterogeneity in terminology. Variation also exists on methods used to psychosocially evaluate potential donors. The scientific basis of predonation psychosocial evaluation needs to be strengthened. There is a need for high‐quality prospective psychosocial outcome studies in living donors, a uniform terminology to label psychosocial screening criteria, and validated instruments to identify risk factors.

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.

A psychometric analysis of the Rotterdam Renal Replacement Knowledge-Test (R3K-T) using item response theory

Knowledge is a prerequisite for promoting well‐informed decision‐making. Nevertheless, there is no validated and standardized test to assess the level of knowledge among renal patients regarding kidney disease and all treatment options. Therefore, the objective of this study was to investigate the psychometric properties of such a questionnaire for use in research and practice. A 30‐item list was validated in four groups: (1) 187 patients on dialysis, (2) 82 patients who were undergoing living donor kidney transplantation the following day, (3) the general population of Dutch residents (n = 515) and (4) North American residents (n = 550). The psychometric properties of the questionnaire were examined using multidimensional item response theory (MIRT). Norm references were also calculated. Five items were found to distort ability estimates (Differential item functioning; DIF). MIRT analyses were subsequently carried out for the remaining 25 items. Almost all items showed good discrimination and difficulty parameters based on the fitted model. Two stable dimensions with 21 items were retrieved for which norm references for the Dutch and North American, dialysis and transplantation groups were calculated. This study resulted in a thorough questionnaire, the Rotterdam renal replacement knowledge‐test, which enables reliable testing of patients knowledge on kidney disease and treatment options in clinic and research.

Toward a Conceptualization of the Content of Psychosocial Screening in Living Organ Donors: An Ethical Legal Psychological Aspects of Transplantation Consensus.

Background Across Europe, transplant centers vary in the content of the psychosocial evaluation for eligible living organ donors. To identify whether a common framework underlies this variation in this evaluation, we studied which psychosocial screening items are most commonly used and considered as most important in current psychosocial screening programs of living organ donors. Methods A multivariate analytic method, concept mapping, was used to generate a visual representation of the “psychosocial” screening items of living kidney and liver donors. A list of 75 potential screening items was derived from a systematic literature review and sorted and rated for their importance and commonness by multidisciplinary affiliated health care professionals from across Europe. Results were discussed and fine-tuned during a consensus meeting. Results The analyses resulted in a 6-cluster solution. The following clusters on psychosocial screening items were identified, listed from most to least important: (1) personal resources, (2) motivation and decision making, (3) psychopathology, (4) social resources, (5) ethical and legal factors, and (6) information and risk processing. Conclusions We provided a conceptual framework of the essential elements in psychosocial evaluation of living donors which can serve as a uniform basis for the selection of relevant psychosocial evaluation tools, which can be further tested in prospective studies.

An argument to abolish legal restrictions on unspecified living kidney donation.

Increasingly more individuals came up with a wish to donate a kidney to an unknown and arbitrary patient from the kidney transplant waiting list. This type of donation is called ‘‘unspecified donation’’ and implies that the donor and recipient are genetically and emotionally unrelated. It is only performed in a few countries because most countries have legal restrictions against unspecified donation. If unspecified donation would be more widely accepted, it could be a good solution for decreasing the gap between kidney demand and available donors. However, a number of professionals doubted the motivations of unspecified donors, and some even wondered whether their wish to donate could be an indicator for mental instability (1). Similarly, they questioned whether these donors are fully aware of the risks and would regret their decision. These questions are especially sensitive as the cost benefit ratio for unspecified donors is less evident in comparison with specified donors who witness the recovery of their recipient. Therefore, research on the psychologic outcomes after unspecified living kidney donation is essential. Two studies revealed that most unspecified living kidney donors were satisfied with the donation process and did not regret their decision (2, 3). Subsequently, in our own study, we found that the majority of donors showed no change in psychologic symptoms after donation, whereas a small minority of donors showed an increase or decrease after donation (4). However, these changes seemed comparable to changes in psychologic symptoms observed in the general population. In conclusion, these studies show reassuring results on the psychologic outcomes after unspecified donation. However, a subsequent question is whether psychologic outcomes of unspecified donors are equivalent to the outcomes for specified donors. This question is important because it is unknown what the impact is if the donor cannot witness the recovery process of the recipient. Rodrigue et al. (5) compared unspecified and specified donors after donation and found no differences between these two groups on motives, psychologic benefits, and health-related quality of life. Now in the present issue of Transplantation, Maple et al. (6) build on the latter study and performed a comprehensive retrospective study that included the largest number of unspecified donors until now. In this study, 110 unspecified living kidney donors and 90 specified donors completed questionnaires after their donation. The merits of this study are a high response rate and the inclusion of many different outcomes: physical outcomes, both positive and negative aspects of mental health, and donation-related outcomes. Because the results of this study show that specified and unspecified donors do not differ on the mentioned outcomes, the conclusion is that the absence of a relationship with the recipient has no negative effect on psychologic outcomes after donation. Possibly, unspecified donors get sufficiently satisfied from the awareness that someone benefited from their donation, which is in line with their motivations to donate and their altruistic lifestyle. We note that a limitation of the study by Maple et al. (6) is the retrospective design. It is possible that unspecified donors were psychologically more healthy before donation than specified donors. This potential difference is conceivable because unspecified donors received a more rigorous psychosocial screening than specified donors. Prospective cohort studies are needed to examine whether changes in psychologic outcomes are equivalent for specified and unspecified donors. Another point we would like to discuss is the psychologic screening of potential donors. Maple et al. (6) concluded that their psychologic screening of unspecified donors was satisfactory as psychologic outcomes were not different between specified and unspecified donors. However, we note that there is no data on the content and necessity for psychologic screening for both specified and unspecified donors. For instance, it is unclear whether the decisions based on current psychologic screening guidelines are accurate. A first question that has to be answered is whether changes in mental health found among a minority of donors reflect normal fluctuations that are also found in the general population or not. To answer this question, prospective cohort studies are needed that compare changes in the donors’ mental health with a representative control group from the general population. ANALYSIS AND COMMENTARY

The ELPAT living organ donor Psychosocial Assessment Tool (EPAT): from ‘what’ to ‘how’ of psychosocial screening – a pilot study

Thorough psychosocial screening of donor candidates is required in order to minimize potential negative consequences and to strive for optimal safety within living donation programmes. We aimed to develop an evidence‐based tool to standardize the psychosocial screening process. Key concepts of psychosocial screening were used to structure our tool: motivation and decision‐making, personal resources, psychopathology, social resources, ethical and legal factors and information and risk processing. We (i) discussed how each item per concept could be measured, (ii) reviewed and rated available validated tools, (iii) where necessary developed new items, (iv) assessed content validity and (v) pilot‐tested the new items. The resulting ELPAT living organ donor Psychosocial Assessment Tool (EPAT) consists of a selection of validated questionnaires (28 items in total), a semi‐structured interview (43 questions) and a Red Flag Checklist. We outline optimal procedures and conditions for implementing this tool. The EPAT and user manual are available from the authors. Use of this tool will standardize the psychosocial screening procedure ensuring that no psychosocial issues are overlooked and ensure that comparable selection criteria are used and facilitate generation of comparable psychosocial data on living donor candidates.

Predictors of Change in Donorsʼ Mental Health Three Months After Living Kidney Donation.: Abstract# A325

Background In order to optimize screening and support of living kidney donors, we examined which factors predict changes in donors’ mental health after living kidney donation. Methods Living kidney donors (N=137) completed validated questionnaires and participated in interviews a median of 2 months before and 3 months after donation. Using multilevel linear models we examined whether psychological complaints and wellbeing were predicted by sociodemographic characteristics, medical outcomes for donor and recipient, and psychological factors based on stress models of Lazarus (1999) and Ursin & Eriksen (2004). Findings There was no main effect of time on psychological complaints while wellbeing increased over time (p<.01). Donors’ home situation, greater stress, appraising donation as an uncontrollable or negative event, expectations of negative personal consequences, coping, social support, and more negative life events predicted negative changes in donors’ mental health. Medical outcomes were not related to changes in donors’ mental health. Discussion We recommend negative appraisals of donation and individual resources as targets for improved donor screening and support.

Changes in mental health among living kidney donors after donation: a a matched control study

Background It is unclear whether living kidney donors experience psychological burden as a result of their donation. Research is hampered by the lack of a suitable control group: changes in mental health could reflect normal fluctuations. We used a control group from the general population to compare changes in mental health over time. Methods Controls were matched with 125 living kidney donors on gender and baseline mental health. Donors and controls completed the Brief Symptom Inventory (BSI) and Mental Health Continuum twice, 6 months apart. Donors donated their kidney median 3 months after baseline. Multilevel linear models were used as well as the reliable change index (RCI) of the BSI. Findings Multilevel modelling showed that donors and controls did not differ in changes of mental health over time. Based on the RCI, 2 donors versus 4 controls showed a decrease in psychological complaints and 10 donors versus 5 controls showed an increase. RCI changes were not significantly different between donors and controls. Discussion We conclude that changes in donors’ mental health 3 months after donation do not significantly differ from natural fluctuations found in the general population.