Sohal Y. Ismail

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.

Home‐Based Family Intervention Increases Knowledge, Communication and Living Donation Rates: A Randomized Controlled Trial

Our aim was to develop and test an educational program to support well‐informed decision making among patients and their social network regarding living donor kidney transplantation (LDKT). One hundred sixty‐three patients who were unable to find a living donor were randomized to standard care or standard care plus home‐based education. In the education condition, patients and members of their social network participated in home‐based educational meetings and discussed renal replacement therapy options. Patients and invitees completed pre–post self‐report questionnaires measuring knowledge, risk perception, communication, self‐efficacy and subjective norm. LDKT activities were observed for 6 months postintervention. Patients in the experimental group showed significantly more improvements in knowledge (p < 0.001) and communication (p = 0.012) compared with the control group. The invitees showed pre–post increases in knowledge (p < 0.001), attitude toward discussing renal replacement therapies (p = 0.020), attitude toward donating a kidney (p = 0.023) and willingness to donate a kidney (p = 0.039) and a decrease in risk perception (p = 0.003). Finally, there were significantly more inquiries (29/39 vs. 13/41, p < 0.001), evaluations (25/39 vs. 7/41, p < 0.001) and actual LDKTs (17/39 vs. 4/41, p = 0.003) in the experimental group compared with the control group. Home‐based family education supports well‐informed decision making and promotes access to LDKT.

Modifiable Factors in Access to Living-Donor Kidney Transplantation Among Diverse Populations

Background We have observed a significant inequality in the number of living-donor kidney transplants (LDKT) performed between patients of non-Western European origin and those of Western European origin. The aim of this study was to investigate modifiable factors that could be used as potential targets for an intervention in an attempt to reduce this inequality. Methods A questionnaire on knowledge, risk perception, communication, subjective norm, and willingness to accept LDKT was completed by 160 end-stage renal patients who were referred to the pretransplantation outpatient clinic (participation rate of 92%). The questionnaire was available in nine languages. Multivariate analyses of variance were conducted to explore differences between patients with and without a living donor. Results There were significantly fewer patients of non-Western descent (11 of 82) that brought a living donor to the outpatient clinic than patients of Western descent (38 of 78). After correcting for the unmodifiable sociodemographic factors non-Western descent, low knowledge, little communication about their kidney disease, and low willingness to communicate with individuals from the social network about LDKT were significantly associated with the absence of a living donor. Conclusions Knowledge and communication are identified as modifiable factors that are associated with the likelihood of identifying a potential living donor for LDKT. This observation makes knowledge and communication targets for interventions to reduce inequality in access to LDKT.

Religious attitudes towards living kidney donation among Dutch renal patients

Terminal kidney patients are faced with lower quality of life, restricted diets and higher morbidity and mortality rates while waiting for deceased donor kidney transplantation. Fortunately, living kidney donation has proven to be a better treatment alternative (e.g. in terms of waiting time and graft survival rates). We observed an inequality in the number of living kidney transplantations performed between the non-European and the European patients in our center. Such inequality has been also observed elsewhere in this field and it has been suggested that this inequality relates to, among other things, attitude differences towards donation based on religious beliefs. In this qualitative research we investigated whether religion might indeed (partly) be the explanation of the inequalities in living donor kidney transplants (LDKT) among non-European patients. Fifty patients participated in focus group discussions and in-depth interviews. The interviews were conducted following the focus group method and analyzed in line with Grounded Theory. The qualitative data analyses were performed in Atlas.ti. We found that religion is not perceived as an obstacle to living donation and that religion actually promotes helping and saving the life of a person. Issues such as integrity of the body were not seen as barriers to LDKT. We observed also that there are still uncertainties and a lack of awareness about the position of religion regarding living organ donation within communities, confusion due to varying interpretations of Holy Scriptures and misconceptions regarding the process of donation. Faith leaders play an important educational role and their opinion is influential. This study has identified modifiable factors which may contribute to the ethnic disparity in our living donation program. We argue that we need to strive for more clarity and awareness regarding the stance of religion on the issue of living donation in the local community. Faith leaders could be key figures in increasing awareness and alleviating uncertainty regarding living donation and transplantation.

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.

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

BackgroundLiving 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 designAll 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.DiscussionIf 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.Trial registrationNetherlands Trial Register, NTR2730.

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.

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.

Mental health assessment of altruistic non-directed kidney donors: An EAPM consensus statement

The number of living kidney donations is increasing in many countries, in response to increasing demand, lengthening waiting lists for transplants from deceased donors, and, in some areas, cultural or religious resistance to deceased donation. In most such donations the donor and recipient are related genetically or emotionally, but there are various routes by which a donor may give a kidney to a recipient who is a stranger. The practice of paired, pooled or chained donation - in which a recipient receives an organ from a stranger, in return for which that recipient‘s emotionally or genetically related (but incompatible) donor gives a kidney to another stranger - is accepted and growing. In contrast, the selling of organs by donors is controversial and generally illegal, except in a few countries.

Patients' decision-making, experiences and preferences regarding Pixantrone treatment in relapsed aggressive B-cell lymphoma: Research protocol for a longitudinal qualitative study

intravenously [IV], day 1), bendamustine (B, 70 mg/m2 IV, days 2 and 3), and cytarabine (500 mg/m2, IV on days 2 to 4) every 21 days, up to 6 cycles. T‐cell lymphomas did not receive R. All patients had received anthracycline containing induction therapy (CHOP or CHOP‐like), 5 (22%) had previous ASCT, and median number of previous treatment was 2 (range 1‐4). Median time from initial lymphoma diagnosis was 29 months (4‐120). Overall, 57% had relapsed disease, and 43% had refractory disease, with 17% of patients being refractory both to CHOP and DHAP/GDP. Response was assessed according to IWG 2007 criteria. Results: Patients received a median of 4 cycles of R‐BAC (2‐6). Overall, OR was 74%, and CR was 52%. Among different histologies, OR was 75% in DLBCL (CR 58%), 78% in t‐DLBCL (CR 56%), and 50% in T‐cell lymphoma (one partial remission, one stable disease). Refractory patients had an OR of 60% (CR 30%). The median overall survival and PFS were 15.4 (9‐19) and 10.2 (7‐14) months, respectively (Figure 1). Median duration of response was 14.7 months (4‐24). Treatment was well tolerated, with main toxicity being hematological, as expected. Treatment discontinuations before cycle 4 were due to toxicity/adverse events in 17%, progressive disease in 17%, and other reasons in 13%. Nine patients (39%) received cytarabine dose reduction (2 days instead of 3), due to advanced age or toxicity. Neither number of previous lines nor relapsed vs refractory disease were associated with significantly different PFS. Conclusions: R‐BAC had promising activity with an acceptable toxicity profile in this small explorative cohort of heavily pretreated R/R aggressive lymphomas. Our results suggest that R‐BAC should be further investigated in this setting.