Patient knowledge in anaesthesia: Psychometric development of the RAKQ-The Rotterdam anaesthesia Knowledge questionnaire.

The transition from in-person to digital preoperative patient education requires effective methods for evaluating patients' understanding of the perioperative process, risks, and instructions to ensure informed consent. A knowledge questionnaire covering different anaesthesia techniques and instructions could fulfil this need. We constructed a set of items covering common anaesthesia techniques requiring informed consent and developed the Rotterdam Anaesthesia Knowledge Questionnaire (RAKQ) using a structured approach and Item Response Theory. A team of anaesthetists and educational experts developed the initial set of 60 multiple-choice items, ensuring content and face validity. Next, based on exploratory factor analysis, we identified seven domains: General Anaesthesia-I (regarding what to expect), General Anaesthesia-II (regarding the risks), Spinal Anaesthesia, Epidural Anaesthesia, Regional Anaesthesia, Procedural sedation and analgesia, and Generic Items. This itemset was filled out by 577 patients in the Erasmus MC, Rotterdam, and Albert Schweitzer Hospital, Dordrecht, the Netherlands. Based on factor loadings (≥0.25) and considering clinical relevance this initial item set was reduced to 50 items, distributed over the seven domains. Each domain was processed to produce a separate questionnaire. Through an iterative process of item selection to ensure that the questionnaires met the criteria for Item Response Theory modelling, 40 items remained in the definitive set of seven questionnaires. Finally, we developed an Item Response Theory model for each questionnaire and evaluated its reliability. 1-PL and 2-PL models were chosen based on best model fit. No item misfit (S-χ2, p<0.001 = misfit) was detected in the final models. The newly developed RAKQ allows practitioners to assess their patients' knowledge before consultation to better address knowledge gaps during consultation. Moreover, they can decide whether the level of knowledge is sufficient to obtain digital informed consent without face-to-face education. Researchers can use the RAKQ to compare new methods of patient education with traditional methods.

A digital intake tool to avert outpatient visits in a FIT-based colorectal cancer screening population: study protocol of a multicentre, prospective non-randomized trial - the DIT-trial.

BACKGROUND: Currently all participants of the Dutch colorectal cancer (CRC) screening program with a positive faecal immunochemical test (FIT) are seen at the outpatient clinic to assess their health status, receive information on colonoscopy and CRC risk, and provide informed consent. However, for many patients this information could probably also safely be exchanged in an online setting, in order to reduce the burden for patients, healthcare system, and environment. In this study we will evaluate if a face-to-face pre-colonoscopy consultation can be replaced by a Digital Intake Tool (DIT) in a CRC screening population. METHODS: This is a prospective multicentre single-arm, non-randomized study with a non-inferiority design. The DIT will triage a total of 1000 participants and inform them about CRC risk, colonoscopy, sedation, and provide bowel preparation instructions. Participants identified as high-risk (i.e., red-triaged) will be contacted by phone or scheduled for an appointment at the outpatient clinic. The primary outcome measure will be adequate bowel preparation rate, defined as the proportion of participants with a Boston Bowel Preparation (BBPS) score ≥ 6. To compare our primary outcome, we will use colonoscopy data from 1000 FIT positive participants who visited the outpatient clinic for pre-colonoscopy consultation. Secondary outcomes will include participation rate, colonoscopy adherence rate, patient experience in terms of satisfaction and anxiety, knowledge transfer, number of outpatient visits that can be averted by the DIT, and cost-effectiveness of the tool. Ethical approval was obtained from the Medical Ethical Committee of the Erasmus Medical Center (MEC-2021-0098). DISCUSSION: This study aims to assess if a face-to-face pre-colonoscopy consultation can be replaced by an eHealth assessment and education tool in a FIT-based CRC screening program. In case favourable results are established, the intervention evaluated in this study could significantly impact CRC screening programs, benefiting both patients and healthcare systems on a (inter)national scale. Additionally, it would enable more personalized care as the DIT can be easily customized and made feasible in other languages, thereby enhancing healthcare accessibility. TRIAL REGISTRATION: Dutch Trial Register: NL9315 , date of registration: March 8th, 2021.

Paving the way for solutions improving access to kidney transplantation: a qualitative study from a multistakeholder perspective.

OBJECTIVES: The aim of this study was to obtain an in-depth perspective from stakeholders involved in access to kidney transplantation to pave the way for solutions in improving access to kidney transplantation. This study qualitatively explored factors influencing optimal access to kidney transplantation from a broad stakeholder perspective. DESIGN: A qualitative study was performed using semistructured interviews both in focus groups and with individual participants. All interviews were recorded, transcribed and coded according to the principles of grounded theory. SETTING: Participants were healthcare providers (geographically spread), patients and (former living) kidney donors, policy-makers and insurers. PARTICIPANTS: Stakeholders (N=87) were interviewed regarding their perceptions, opinions and attitudes regarding access to kidney transplantation. RESULTS: The problems identified by stakeholders within the domains-policy, medical, psychological, social and economic-were acknowledged by all respondents. According to respondents, more efforts should be made to make healthcare providers and patients aware of the clinical guideline for kidney transplantation. The same opinion applied to differences in medical inclusion criteria used in the different transplantation centres. Stakeholders saw room for improvement based on psychological and social themes, especially regarding the provision of information. Many stakeholders described the need to rethink the current economic model to improve access to kidney transplantation. This discussion led to a definition of the most urgent problems for which, according to the respondents, a solution must be sought to optimise access to kidney transplantation. CONCLUSIONS: Stakeholders indicated a high sense of urgency to solve barriers in patient access to kidney transplantation. Moreover, it appears that some barriers are quite straightforward to overcome; according to stakeholders, it is striking that this process has not yet been overcome. Stakeholders involved in kidney transplantation have provided directions for future solutions, and now it is possible to search for solutions with them.

Twenty Years of Unspecified Kidney Donation: Unspecified Donors Looking Back on Their Donation Experiences.

The Netherlands was the first European country to implement unspecified kidney donation in 2000. This qualitative study aimed to evaluate the experiences of unspecified kidney donors (UKDs) in our transplant institute to improve the care for this valuable group of donors. We conducted semi-structured interviews with 106 UKDs who donated between 2000-2016 (response rate 84%). Interviews were audio-recorded, transcribed verbatim and independently coded by 2 researchers in NVivo using thematic analysis. The following 14 themes reflecting donor experiences were found: Satisfaction with donation; Support from social network; Interpersonal stress; Complaints about hospital care; Uncertainty about donor approval; Life on hold between approval and actual donation; Donation requires perseverance and commitment; Recovery took longer than expected; Normalization of the donation; Becoming an advocate for living kidney donation; Satisfaction with anonymity; Ongoing curiosity about outcome or recipient; Importance of anonymous communication; Anonymity is not watertight. The data reinforced that unspecified kidney donation is a positive experience for donors and that they were generally satisfied with the procedures. Most important complaints about the procedure concerned the length of the assessment procedure and the lack of acknowledgment for UKDs from both their recipients and health professionals. Suggestions are made to address the needs of UKDs.

Strategies to address perceived barriers to timely kidney transplantation in the Netherlands: A qualitative study from a stakeholders' perspective.

Objective: We present strategies to perceived barriers to access to kidney transplantation (KT) in the Netherlands. Methods: This qualitative study (N = 70) includes nephrologists, social workers, surgeons, nurses, patients, former living kidney donors, policy employees, and insurance representatives. Interviews were conducted both in focus groups and individually and coded with NVivo. Results: Participants proposed strategies within five domains. 1.Policy: Making KT guideline more visible. 2.Medical: Increase access and transparency to KT medical eligibility criteria (e.g., age, BMI) for patients and healthcare providers. 3.Psychological: Support patients who continue to use dialysis because of social interaction opportunities associated with dialysis settings to find such interaction elsewhere. Link kidney patients with fears for KT to experienced experts or trained professionals. 4.Social: Support patients with language barriers with interpreters and visual explanations. Support patients using social media, e.g. Facebook, to identify potential donors. Better expectation management to reduce reports of inadequate aftercare for living donors. 5.Economical: Solving negative economic incentives for KT by changing incentives. Conclusion: Stakeholders see strategies for barriers in the entire care pathway. Innovation: This large qualitative study gives an important overview which strategies stakeholders see improving access to KT. Some strategies offer opportunities to solve barriers in the short-term.

Induced demand in kidney replacement therapy.

There are three notable aspects of the current kidney replacement therapy program. First, the number of patients on home dialysis has dropped substantially over the last decades. Second, the rate of transplantation has stabilized in recent years. Third, there is variation in referral rate for transplantation among hospitals. These trends are the result of overutilization of in-center dialysis and that demand for kidney replacement therapy is moderated by suppliers. Current healthcare policy leads to overutilization of in-center dialysis and underutilization of home dialysis and transplantation. This overutilization is the result of supplier-induced demand and leads to suboptimal care for patients and excessive healthcare expenditures. The main drivers of this overutilization are the overcapacity of in-center dialysis beds and the high financial disincentives on empty dialysis beds. Policymakers should address this by reducing dialysis capacity and increasing the capacity of transplantation facilities. This is the first attempt to address the overutilization and the nonalignment of supply and demand by looking at the capacity of in-center dialysis and the financial disincentives for physicians on empty in-center dialysis beds. In our analysis, we conclude that limiting the capacity of in-center dialysis beds is the most effective strategy to better align supply and demand, which will result in better patient outcomes and lower societal costs.

Living Kidney Donor Knowledge of Provided Information and Informed Consent: The PRINCE Study.

BACKGROUND: Informed consent for living kidney donation is paramount, as donors are healthy individuals undergoing surgery for the benefit of others. The informed consent process for living kidney donors is heterogenous, and the question concerns how well they are actually informed. Knowledge assessments, before and after donor education, can form the basis for a standardized informed consent procedure for live kidney donation. METHODS: In this prospective, a multicenter national cohort study conducted in all eight kidney transplant centers in The Netherlands, we assessed the current status of the informed consent practice for live donor nephrectomy. All of the potential living kidney donors in the participating centers were invited to participate. They completed a pop quiz during their first outpatient appointment (Cohort A). Living kidney donors completed the same pop quiz upon admission for donor nephrectomy (Cohort B). RESULTS: In total, 656 pop quizzes were completed (417 in Cohort A, and 239 in Cohort B). The average donor knowledge score was 7.0/25.0 (±3.9, range 0-18) in Cohort A, and 10.5/25.0 (±2.8, range 0-17.5) in Cohort B. Cohort B scored significantly higher on overall knowledge, preparedness, and the individual item scores (p < 0.0001), except for the long-term complications (p = 0.91). CONCLUSIONS: Donor knowledge generally improves during the live donor workup, but it is still quite disappointing. Long-term complications, especially, deserve more attention during living kidney donor education.

A dynamic Markov model to assess the cost-effectiveness of the Kidney Team at Home intervention in The Netherlands.

OBJECTIVES: The Kidney Team at Home program is an educational intervention aimed at patients with chronic kidney disease to assist them in their choice for kidney replacement therapy. Previous studies have shown that the intervention results in an increase in knowledge and communication on kidney replacement therapy, and eventually in an increase in the number of living donor kidney transplantations. The study assesses the cost-effectiveness of the intervention compared to standard care. METHODS: A dynamic probabilistic Markov model was used to estimate the monetary and health benefits of the intervention in The Netherlands over 10 years. Data on costs and health-related quality of life were derived from the literature. Transition probabilities, prevalence, and incidence rates were calculated using a large national database. An optimistic and a pessimistic implementation scenario were compared to a base case scenario with standard care. RESULTS: In both the optimistic and pessimistic scenario, the intervention is cost-effective and dominant compared to standard care: savings were €108,681,985 and €51,770,060 and the benefits were 1382 and 695 QALYs, respectively. CONCLUSIONS: The superior cost-effectiveness of the intervention is caused by the superior health effects and the reduction of costs associated with transplantation, and the relatively small incremental costs of the intervention. The favorable findings of this implementation project resulted in national uptake of the intervention in The Netherlands as of 2021. This is the first time a psychosocial intervention has been implemented as part of standard care in a kidney replacement therapy program worldwide.

Positive and negative aspects of mental health after unspecified living kidney donation: A cohort study.

OBJECTIVES: Unspecified donors give a kidney to a stranger with end-stage kidney failure. There has been little research on the long-term impact of unspecified donation on mental health outcomes. The aim of this study was to assess the positive and negative aspects of mental health among unspecified donors. DESIGN: We invited all unspecified donors who donated a kidney between 2000 and 2016 at our centre to participate in an interview and to complete validated questionnaires. METHODS: We measured positive mental health using the Dutch Mental Health Continuum-Short Form (MHC-SF), psychological complaints using the Symptoms Checklist-90 (SCL-90) and psychiatric diagnoses using the Mini-International Neuropsychiatric Interview (M.I.N.I.) Screen for all donors and the M.I.N.I. Plus on indication. RESULTS: Of the 134 eligible donors, 114 participated (54% female; median age 66 years), a median of 6 years post-donation. Scores on emotional and social well-being subscales of the MHC-SF were significantly higher than in the general population. Psychological symptoms were comparable to the general population. Thirty-two per cent of donors had a current or lifetime psychiatric diagnosis. Psychological symptoms did not significantly change between the pre-donation screening and the post-donation study. CONCLUSIONS: We concluded that, with the appropriate screening, unspecified donation is a safe procedure from a psychological perspective.

Implementation of the kidney team at home intervention: Evaluating generalizability, implementation process, and effects.

Research has shown that a home-based educational intervention for patients with chronic kidney disease results in better knowledge and communication, and more living donor kidney transplantations (LDKT). Implementation research in the field of renal care is almost nonexistent. The aims of this study were (1) to demonstrate generalizability, (2) evaluate the implementation process, and (3) to assess the relationship of intervention effects on LDKT-activity. Eight hospitals participated in the project. Patients eligible for all kidney replacement therapies (KRT) were invited to participate. Effect outcomes were KRT-knowledge and KRT-communication, and treatment choice. Feasibility, fidelity, and intervention costs were assessed as part of the process evaluation. Three hundred and thirty-two patients completed the intervention. There was a significant increase in KRT-knowledge and KRT-communication among participants. One hundred and twenty-nine out of 332 patients (39%) had LDKT-activity, which was in line with the results of the clinical trials. Protocol adherence, knowledge, and age were correlated with LDKT-activity. This unique implementation study shows that the results in practice are comparable to the previous trials, and show that the intervention can be implemented, while maintaining quality. Results from the project resulted in the uptake of the intervention in standard care. We urge other countries to investigate the uptake of the intervention.

Patients' and surgeons' experiences after failed breast reconstruction: A qualitative study.

BACKGROUND: The goal of postmastectomy breast reconstruction (BR) is to improve the quality of life of patients. However, complications following autologous BR (A-BR) and implant-based BR (I-BR) occur frequently and may even lead to BR-failure, which can be a distressing event for both patients and surgeons. The current study, therefore, examines the experiences of both patients and surgeons after a BR-failure. METHODS: Patients with a failed BR from a large multicenter cohort study and participating plastic surgeons were invited to participate in semi-structured interviews focusing on their experiences. The interviews were analyzed according to the principles of grounded theory. RESULTS: Fourteen patients with a failed I-BR, four patients with a failed A-BR, and four plastic surgeons were participated. Three main categories emerged from the data: personal experiences with BR-failure, the motives for a redo of a failed BR, and patient-surgeon communication. Patients would like to be treated with more attention to their personal feelings and lives, instead of being approached from a purely medical-technical perspective. Surgeons may experience feelings of guilt leading to the strong urge to fix the failed BR, whereas patients may be less inclined to undergo additional operations. Patients want to know what the choice for a particular type of BR would mean to their personal lives. The impact of I-BR-failure may be underestimated and requires the same degree of intensive aftercare and attention. CONCLUSIONS: Implementing the recommendations of this study in clinical practice may facilitate improvements in how both patients and surgeons cope with a BR-failure.

Factors influencing access to kidney transplantation: a research protocol of a qualitative study on stakeholders' perspectives.

INTRODUCTION: Unequal access to kidney transplantation is suggested, but no systematic inventory exists about factors influencing access to kidney transplantation. There is an absence of any research that has combined stakeholder perspectives along the complete trajectory of transplantation. The present qualitative study explores the contributing factors from the perspectives of multiple stakeholders in this trajectory, including patients, health professionals and health insurance and financial representatives in the Netherlands. Moreover, stakeholders will be invited to suggesting strategies and solutions for handling the facilitating and hindering factors found. By means of interaction, stakeholder groups will arrive at a consensus for new policymaking in the field of a Dutch transplantation care. METHODS AND ANALYSIS: The different stakeholders' perspectives and possible solutions will be explored by interviewing in three phases. In the first phase, stakeholders' group perspectives will be explored with individual interviews and focus group interviews without confrontation of views from other perspectives. In the second phase of focus group interviewing, perspectives will be confronted with the other stakeholders' perspectives assessed. Finally, in the third phase, stakeholders will be invited to focus group discussions for suggesting solutions to overcome barriers and promote facilitators for improving access to transplantation. Approximately, groups from six to twelve participants per focus group and four to maximal six focus groups will be held per stakeholder, depending on the level of saturation, as prescribed by grounded theory. The interviews will be audio-recorded and transcribed verbatim, and qualitative data will be analysed according to the principles of grounded theory supported by using NVivo software. ETHICS AND DISSEMINATION: The Medical Ethical Committee of Erasmus MC, Rotterdam, The Netherlands, has approved this study. The results will be disseminated in peer-reviewed journals and major international conferences.

Patients' decision-making, experiences and preferences regarding pixantrone treatment in relapsed or refractory diffuse large B-cell lymphoma: study protocol for a longitudinal mixed methods study.

INTRODUCTION: There is a lot of speculation about why and how patients decide to use invasive treatment in an advanced stage of cancer, but the body of research is limited. The present longitudinal qualitative and quantitative study reflects real-life practice of pixantrone use and aims to collect data on patients' considerations for, expectations of and experiences with pixantrone and trajectories in their quality-of-life (QoL) values in a Dutch clinical setting. Hence, two questions emerge. Why do patients choose for this treatment, while the treatment success rate is limited and curation cannot be achieved? And second, once chosen, what conditions would patients like to satisfy and how do they experience the treatment? METHODS AND ANALYSIS: This is a non-interventional longitudinal and multicentre study. Patients are eligible if they are >18 years, have never been treated with pixantrone before, have an Eastern Cooperative Oncology Group performance score ≤2, have a relapsed or refractory diffuse large B-cell lymphoma and have been treated with at least two prior regimens. The decision to treat patients with pixantrone has been taken by the treating physician before patients are asked to participate in the study. If patients refuse study participation after being informed by the investigator, reasons for refusal (if given) will be recorded. Participants will receive at least three interviews accompanied by three QOL questionnaires. Based on the required sample size, we aim to include 20 patients over a period of 2 years. ETHICS AND DISSEMINATION: The Medical Ethical Committee of Erasmus MC, Rotterdam, The Netherlands, has approved this study. The results will be disseminated in peer-reviewed journals and major international conferences. The study is non-interventional and falls therefore not under Medical Research Involving Human Subjects Act (In Dutch: Wet medisch-wetenschappelijk onderzoek met mensen; WMO). Hence, this study is approved to be carried out in the Erasmus MC. Each other participating centre will receive this approval and will separately undergo the ethical approval to be able to participate. In addition to the ethical approval, the participating centres need to obtain written informed consent of their patients. Given the non-interventional nature of this study, a study registration was considered but deemed unnecessary. The study will be conducted in accordance with the Declaration of Helsinki (Tokyo, Venice, Hong Kong and Somerset West amendments). A sequential identification number will be automatically attributed to each patient that has given consent to participate in the study. This number will identify the patient and must be included on all documents. Only the main researcher can link the code to the patient's identity.

Cost-effectiveness of a home-based group educational programme on renal replacement therapies: a study protocol.

INTRODUCTION: Living donor kidney transplantation (LDKT) is the optimal treatment for most patients with end-stage renal disease (ESRD). However, there are numerous patients who cannot find a living kidney donor. Randomised controlled trials have shown that home-based education for patients with ESRD and their family/friends leads to four times more LDKTs. This educational intervention is currently being implemented in eight hospitals in the Netherlands. Supervision and quality assessment are being employed to maintain the quality of the intervention. In this study, we aim to: (1) conduct a cost-effectiveness analysis of the educational programme and its quality assurance system; (2) investigate the relationship between the quality of the implementation of the intervention and the outcomes knowledge, communication and LDKT activities; and (3) investigate policy implications. METHODS AND DESIGN: Patients with ESRD who do not have a living kidney donor are eligible to receive the home-based educational intervention. This is carried out by allied health transplantation professionals and psychologists across eight hospitals in the Netherlands. The cost-effectiveness analysis will be conducted with a Markov model. Cost data will be obtained from the literature. We will obtain the quality of life data from the patients who participate in the educational programme. Questionnaires on knowledge and communication will be used to measure the outcomes of the programme. Data on LDKT activities will be obtained from medical records up to 24 months after the education. A protocol adherence measure will be assessed by a third party by means of a telephone interview with the patients and the invitees. ETHICS AND DISSEMINATION: Ethical approval was obtained through all participating hospitals. Results will be disseminated through peer-reviewed publications and scientific presentations. Results of the cost-effectiveness of the educational programme will also be disseminated to the Dutch National Health Care Institute. TRIAL REGISTRATION NUMBER: NL6529.

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.

Towards a standardised informed consent procedure for live donor nephrectomy: the PRINCE (Process of Informed Consent Evaluation) project-study protocol for a nationwide prospective cohort study.

INTRODUCTION: Informed consent is mandatory for all (surgical) procedures, but it is even more important when it comes to living kidney donors undergoing surgery for the benefit of others. Donor education, leading to informed consent, needs to be carried out according to certain standards. Informed consent procedures for live donor nephrectomy vary per centre, and even per individual healthcare professional. The basis for a standardised, uniform surgical informed consent procedure for live donor nephrectomy can be created by assessing what information donors need to hear to prepare them for the operation and convalescence. METHODS AND ANALYSIS: The PRINCE (Process of Informed Consent Evaluation) project is a prospective, multicentre cohort study, to be carried out in all eight Dutch kidney transplant centres. Donor knowledge of the procedure and postoperative course will be evaluated by means of pop quizzes. A baseline cohort (prior to receiving any information from a member of the transplant team in one of the transplant centres) will be compared with a control group, the members of which receive the pop quiz on the day of admission for donor nephrectomy. Donor satisfaction will be evaluated for all donors who completed the admission pop-quiz. The primary end point is donor knowledge. In addition, those elements that have to be included in the standardised format informed consent procedure will be identified. Secondary end points are donor satisfaction, current informed consent practices in the different centres (eg, how many visits, which personnel, what kind of information is disclosed, in which format, etc) and correlation of donor knowledge with surgeons' estimation thereof. ETHICS AND DISSEMINATION: Approval for this study was obtained from the medical ethical committee of the Erasmus MC, University Medical Center, Rotterdam, on 18 February 2015. Secondary approval has been obtained from the local ethics committees in six participating centres. Approval in the last centre has been sought. RESULTS: Outcome will be published in a scientific journal. TRIAL REGISTRATION NUMBER: NTR5374; Pre-results.

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.

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.

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

Evaluating a person's 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.