Donor Advocacy Research Articles

P.469: Psychometrics of Flodén attitudes toward organ donor advocacy instrument in Turkish: A scale adaptation study among intensive care unit nurses.

P.469: Psychometrics of Flodén attitudes toward organ donor advocacy instrument in Turkish: A scale adaptation study among intensive care unit nurses.

Psychosocial Evaluation of Living Kidney Donors: A Survey of Current Practices in the United States.

Best practices in psychosocial evaluation and care of living donor candidates and donors are not well established. We surveyed 195 living kidney donor (LKD) transplant centers in United States from October 2021 to April 2022 querying (1) composition of psychosocial teams, (2) evaluation processes including clinical tools and domains assessed, (3) selection criteria, and (4) psychosocial follow-up post-donation. We received 161 responses from 104 programs, representing 53% of active LKD programs and 67% of LKD transplant volume in 2019. Most respondents (63%) were social workers/independent living donor advocates. Over 90% of respondents indicated donor candidates with known mental health or substance use disorders were initially evaluated by the psychosocial team. Validated psychometric or transplant-specific tools were rarely utilized but domains assessed were consistent. Active suicidality, self-harm, and psychosis were considered absolute contraindications in >90% of programs. Active depression was absolute contraindication in 50% of programs; active anxiety disorder was excluded 27%. Conditions not contraindicated to donation include those in remission: anxiety (56%), depression (53%), and posttraumatic stress disorder (41%). There was acceptance of donor candidates using alcohol, tobacco, or cannabis recreationally, but not if pattern met criteria for active use disorder. Seventy-one percent of programs conducted post-donation psychosocial assessment and use local resources to support donors. There was variation in acceptance of donor candidates with mental health or substance use disorders. Although most programs conducted psychosocial screening post-donation, support is not standardized and unclear if adequate. Future studies are needed for consensus building among transplant centers to form guidelines for donor evaluation, acceptance, and support.

Financial toxicity in living donor liver transplantation: A call to action for financial neutrality

After 2 decades of limited growth, living donor liver transplant (LDLT) has been increasingly accepted as a promising solution to the growing organ shortage in the US. With experience, LDLT offers superior graft and patient survival with low rates of rejection. However, not all waitlisted patients have equal access to LDLT, with financial toxicity representing a substantial barrier. Potential living liver donors face indirect, direct, and opportunity costs associated with donation as well as insurance-based discrimination and variable employer leave policies. There are multiple potential national, local, and patient-centered solutions to address some of the cost-related issues associated with living LDLT. These include standardization of employer leave policies, creation of federal and state-led tax relief programs, optimization of National Living Donor Assistance Center use, engagement of independent living donor advocates, creation of financial toolkits, and encouragement of recipient or donor-led fundraising. In this piece, members of the North American Living Liver Donation Group, a consortium of 37 LDLT programs, explore these financial challenges and discuss solutions to achieve financial neutrality, where individuals can donate free from financial constraints or gains. As a community, it is imperative that we confront factors driving financial toxicity to improve equity and access to LDLT.

604 - Donor Advocacy: the Need for an Ethically, Legally, and Morally Informed Framework for Adult Donors for Allogeneic Hematopoietic Cell Transplant

604 - Donor Advocacy: the Need for an Ethically, Legally, and Morally Informed Framework for Adult Donors for Allogeneic Hematopoietic Cell Transplant

Living Donor Ethics and Uterus Transplantation.

This article provides an in-depth ethical analysis of living donor uterus transplantation, incorporating clinical, psychological, and qualitative study data into the discussion. Although the concept of living organ donors as patients in their own right has not always been present in the field of transplantation, this conceptualization informs the framework for living donor ethics that we apply to living uterus donation. This framework takes root in the principles of research ethics, which include respect for persons, beneficence, and justice. It incorporates an analysis based on eight potential vulnerabilities of living donors: capacitational, juridic, deferential, social, medical, situational, allocational, and infrastructural. Finally, it recognizes that special relationships-such as that of the living donor advocate with the potential donor-require special responsibilities, including identifying vulnerabilities and engaging donors in a shared decision-making process. Directed and non-directed uterus donors require separate ethical analyses because their different relationships with recipients will influence the types of vulnerabilities, they are subject to as well as the potential benefits they may gain from donation.

Acceptability of a Mobile-Health Living Kidney Donor Advocacy Program for Black Wait-Listed Patients.

Marked racial disparities exist in rates of living donor kidney transplantation (LDKT). The Living Organ Video Educated Donors (LOVED) program is a distance-based, mobile health program designed to help Black kidney transplant wait-list patients advocate for a living donor. This study reported on the acceptability outcomes to aid in future refinements. Participants were randomized to LOVED (n = 24, mean age = 50.9 SD (9.2) years), male = 50%) and usual care groups (n = 24 (mean age 47.9 SD (10.0), male 50%). Four LOVED groups completed an eight-week intervention that consisted of six online video education modules and eight group video chat sessions led by a Black navigator. Qualitative analysis from post-study focus groups resulted in six themes: (1) video chat sessions provided essential support and encouragement, (2) videos motivated and made participants more knowledgeable, (3) connectivity with tablets was acceptable in most areas, (4) material was culturally sensitive, (5) participation was overall a positive experience and (6) participants were more willing to ask for a kidney now. The video chat sessions were pertinent in participant satisfaction, though technology concerns limited program implementation. Results showed that the LOVED program was acceptable to engage minorities in health behavior changes for living donor advocacy but barriers exist that require future refinement.

Protecting Minor Donors of Hematopoietic Stem Cells: A Survey in EBMT Transplant Centers

IntroductionHematopoietic stem cell (HSC) donation by minors is a well-established practice. According to the literature, up to one-third of pediatric HSC transplants involves donation by minors, most often siblings. Even though HSC donation involves a medical intervention without direct physical benefit to the donor, a broad consensus exists about its acceptability, as it is potentially life-saving for the recipient and carries no more than small risks but conceivably significant psychosocial benefits for the donor. However, because it concerns an intervention on a patient who is considered vulnerable due to age and from which that person will not physically benefit, protective measures have been proposed in ethical guidelines and position papers published by national ethics committees and professional medical organizations. However, no studies have been conducted to assess whether, and, if so, how, these safeguards are implemented in the practices of transplant centers.MethodsA cross-sectional descriptive survey on practices regarding HSC donation by minors was prepared and distributed via email through the office of the European Society for Blood and Marrow Transplantation (EBMT) to 262 EBMT member centers. The survey included closed-ended as well as open-ended questions that assessed: (i) the conditions that have to be met before HSC donation by a minor is accepted; (ii) the approval process; (iii) how consent is obtained from the minor; and (iv) potential psychological support and follow-up. Answers were collected between March 2016 and June 2017. Descriptive statistics for closed ended questions and qualitative content analysis for open questions were used for data analysis. The study was approved by the EBMT Pediatric Diseases Working Party.ResultsForty out of 262 transplant centers from twenty countries completed the questionnaire, constituting a response rate of 15.3%. Altogether, these centers have reported 5,337 HSC donations since 2010, of which 1,651 donations were made by minors (30.9%). The proportion of HSC donation by minors ranged from 0.5% to 100% among the included transplant centers.Twenty-seven centers (67.5%) reported having in place specific guidelines or protocols with regard to HSC donation by minors. In 80% of centers minors can be evaluated for HLA compatibility simultaneously with adult family members, while in the remaining 20% of centers minors are screened only after all adult family members are found to be medically unsuitable to donate. Nearly half of transplant centers (47.5%) only allow minors to serve as donors for siblings, whereas the others also allowed donation to other close relatives, such as parents, grandparents and cousins.Whereas all of the participating centers described efforts to include minor donors in the decision-making process in a way that is in accordance with their age and maturity, significant differences exist with regard to final approval of the donation. After obtaining consent from the donor and his/her parents, fifteen centers (37.5%) do not require any additional approval, whilst the other centers seek permission from a local or national ethics committee (40%), an independent physician (5%), social worker or donor advocate (5%), or the court (7.5%).An independent donor advocate, whose purpose is to promote the wellbeing of the donor and is not involved in direct care of the recipient, was appointed in about one-third (35%) of the centers. Psychological support to the donor and his family after the donation is routinely provided by 70% of the centers.ConclusionsThis is the first study to examine HSC transplant center practices relating to donation by minors. Although all of the participating centers are members of the EBMT network, our research findings reveal significant differences with regard to: (i) the use of specific guidelines and protocols for HSC donation by minors; (ii) the screening of potential minor donors when a compatible adult minor may be available; (iii) the categories of recipients that may benefit from HSC donation by minors; (iv) the need for, and type of, final approval by an independent body; (v) the availability of a dedicated donor advocate; and (vi) the provision of psychological support to and follow-up of minor HSC donors. On the basis of these findings, we suggest that further efforts to harmonize practices involving HSC donation by minors should be undertaken. DisclosuresNo relevant conflicts of interest to declare.

Ethical Challenges in Independent Living Donor Advocacy.

How are ethical obligations perceived by ILDAs? What ethical principles do ILDAs identify as the basis of their decision making? What are the ethical challenges for ILDAs? A descriptive cross-sectional survey was designed and administered via REDCap. Participants were recruited from the National Kidney Foundation Living Donor Advocate email list. Quantitative and qualitative data on their role, ethical decision making, and perceived ethical issues, by seriousness and frequency, were collected. Thirty-four participants responded. Nonmaleficence was ranked as the primary ethical principle used in decision making. Participants rated obligations to protect higher than advocacy. Participants reported experiencing internal ethical conflict to protect over advocate for the donor. The most serious ethical challenge participants perceived for donors was their decisional capacity, followed by their emotional or psychological distress, which was also described as a frequent donor challenge experienced in their role. The results of this survey validate previous descriptions that the advocate role is largely perceived as protective. Their independent nature as well as the inherent vulnerabilities of the potential living donor compels the continued mitigation of ethical challenges, to enhance advocacy and protection for the living donor.

Marginal parent donors-Process and ethics.

Pre-emptive kidney transplantation for end-stage kidney disease in children has many advantages and may lead to the consideration of marginal parent donors. Using the example of the transplant of a kidney with medullary sponge disease from a parent to the child, we review the ethical framework for working up such donors. The four principles of health ethics include autonomy (the right of the patient to retain control over his/her own body); beneficence (healthcare providers must do all they can do to benefit the patient in each situation); non-maleficence ("first do no harm"-providers must consider whether other people or society could be harmed by a decision made, even if it is made for the benefit of an individual patient) and justice (there should be an element of fairness in all medical decisions). Highly motivated donors may derive significant psychological benefit from their donation and may thus be willing to incur more risk. The transplantation team and, ideally, an independent donor advocate team must make a judgment about the acceptability of the risk-benefit ratio for particular potential donors, who must also make their own assessment. The transplantation team and donor advocate team must be comfortable with the risk-benefit ratio before proceeding. An independent donor advocacy team that focuses on the donor needs is needed with sufficient multidisciplinary ethical, social, and psychological expertise. The decision to accept or reject the donor should be within the authority of the independent donor advocacy team and not the providers or the donor.

Liver Living Donation for Cancer Patients: Benefits, Risks, Justification.

LDLT covers all standard indications for liver transplantation, and the results are similar or even better than for standard DDLT. Due to the donor shortage and long waiting time, LDLT has become a relevant option for patients with liver tumors, provided the expected five-year survival rate is comparable to that of patients receiving a DDLT. Nowadays, LDLT offers the possibility to extend the standard morphometric selection by considering the biological parameters. In the setting of LDLT, we are not only faced with surgical morbidity in the donor, but long-term non-medical problems like psychological complications and financial burden also have to be considered. On the other hand, the benefits to the donor are mainly social and psychological. In LDLT, the donor's altruism is the fundamental ethical principle and it is based on the principles of (1) beneficence (doing good), (2) non-maleficence (avoiding harm), (3) respect for autonomy, and (4) respect for justice (promoting fairness). On top of that, the concept of double equipoise of living organ donation evaluates the relationship between the recipient's need, the donor's risk, and the recipient's outcome. It considers each donor-recipient pair as a unit, analyzing whether the specific recipient's benefit justifies the specific donor's risk in particular oncologic indications. In this light, it is essential to seek adequate informed consent focused on risk, benefits and outcome benefits of both donor and recipient supported by an independent living donor advocate. Finally, the transplant team must protect donors from donation if harm does not justify the expected benefit to the recipient.

Editorial introductions

Current Opinion in Nephrology and Hypertension was launched in 1992. It is part of a successful series of review journals whose unique format is designed to provide a systematic and critical assessment of the literature as presented in the many primary journals. The field of nephrology and hypertension is divided into 12 sections that are each reviewed once a year. Each section is assigned a Section Editor, a leading authority in the area, who identifies the most important topics at that time. Here we are pleased to introduce the Section Editors for this issue. SECTION EDITORS Maarten W. TaalMaarten W. TaalDr Maarten W. Taal graduated from the University of Cape Town Medical School, South Africa, in 1987. After completing his post-graduate training in internal medicine and nephrology at Groote Schuur Hospital, Cape Town, South Africa he joined the Laboratory of Kidney and Electrolyte Physiology at Brigham and Women's Hospital, Boston, USA under the directorship of Barry M. Brenner, MD. His research focused on mechanisms underlying the progression of chronic kidney disease and earned him a Doctor of Medicine degree. He subsequently moved to the United Kingdom where he was appointed a Consultant Renal Physician at Royal Derby Hospital, UK, in 2002 and Honorary Associate Professor at the University of Nottingham, UK in 2011. He was appointed Professor of Medicine in the Division of Medical Sciences and Graduate Entry Medicine at the University of Nottingham in April 2014, where he leads the Centre for Kidney Research and Innovation. His current research interests include chronic kidney disease progression, diabetic nephropathy, renal osteodystrophy and cardiovascular disease in patients with chronic kidney disease (CKD). He has a career-long interest in CKD and co-authored the Renal Association's Clinical Practice Guidelines for CKD. He serves as an Editor for Brenner and Rector's The Kidney, Section Editor for Current Opinion in Nephrology and Hypertension and Academic Editor for PLOS Medicine. He is Chair of the UK Kidney Research Consortium CKD Clinical Study Group and Immediate Past President of the British Renal Society. David J. CohenDavid J. CohenDavid J. Cohen, MD, MA is the Daniel Midler-John A Catsimatidis Professor of Nephrology (in Medicine) and the Medical Director of Kidney and Pancreas Transplantation at Columbia University Irving Medical Center, USA/New York Presbyterian Hospital, New York, USA. He completed his nephrology training at Columbia University, followed by a research fellowship in the transplantation and immunogenetics laboratory of Dr Bernard Carpenter at the Brigham and Women's Hospital, Boston, Massachusetts, USA. He has been on the full-time faculty at Columbia University since 1983. He is a former member of the Board of Directors of the American Society of Transplantation, and served as the head of the Public Policy Committee for many years. He was the co-Editor of NephSAP Transplantation in 2019, 2013 and 2011. His research interests include the clinical application of new immunosuppressive medications, live donor advocacy and improving access to kidney transplantation through reducing the number of kidney discards.

Amplifying the Patient Voice: Key Priorities and Opportunities for Improved Transplant and Living Donor Advocacy and Outcomes During COVID-19 and Beyond.

Purpose of ReviewTo define patient advocacy and engagement for modern transplant and living donation care, particularly in light of the COVID-19 pandemic, describe the patient experience when transplant advocacy and engagement are optimized, and recommend opportunities for advocacy within three key areas: (1) including the patient voice in healthcare decisions and drug development, (2) access to the best evidence-based treatments and informed decision-making, and (3) present and future care innovations and policies.Recent FindingsThere are many avenues for transplant and living donation advocacy and engagement at the patient, provider, family, system, community, and policy levels. Key recommendations include the following: (1) simplifying education to be health literate, written at the appropriate reading level, culturally sensitive, and available in multiple languages and across many delivery platforms, (2) inviting transplant patients and donors to the conversation through advisory panels, consensus conferences, and new mediums like digital storytelling and patient-reported outcomes (PROs), (3) training all members of the health team to understand their role as advocates, and (4) advancing policies and programs that support the financial neutrality of living donation, and support recipients with the cost of immunosuppressive drugs. Key recommendations specific to the COVID-19 pandemic include providing up-to-date, health literate, concise information about preventing COVID-19 and accessing care including telehealth.SummaryEnhancing advocacy and engagement for transplant patients and donors along the pre-to-post transplant/donation continuum can improve clinical outcomes and quality of life generally, and more so, in light of the COVID-19 pandemic.

Cross-cultural adaptation and psychometric validation of the Flod\xe9n ATODAI instrument in the North American context

BackgroundIntensive and critical-care nurses are the key to successful donor management in the critical-care setting. No studies measuring attitudes toward organ donor advocacy existed before 2011, when the 51-item Swedish “Attitudes Toward Organ Donor Advocacy Scale” was developed. The aim of this study was to translate, adapt and establish the psychometric properties of the North American version of the Flodén ATODAI (Attitudes Toward Organ Donor Advocacy Instrument) in terms of validity and reliability.MethodsA multi-step approach was used: Initial translation; Back-translation; Review and synthesis of these translations; Expert panel (N = 7) rated the prefinal version of the instrument for content validity index (CVI); International panel made adjustments guided by the expert panel. Reliability testing with test and retest of the adjusted 46-item version was conducted using intraclass correlation coefficient (ICC), weighted kappa (ҡWeight), sign test, and Cronbach’s alpha coefficient (α), (N = 50); and finally Delphi technique procedure with a preselected Delphi panel (N = 15).ResultsThe CVI was determined to be greater than the 0.05 significance level. Item level (I-CVI) ranged 0.82–1.0, with a mean of 0.97. Scale level (S-CVI) on the entire instrument was 0.97. Test-retest procedure was performed to estimate stability. In total, 34 of the items had good-to-high ICC. Accepting an ICC of ≥ 0.70 resulted in a total of 24 items. Homogeneity reliability was estimated by α and was calculated for these items where α = 0.90. In total, 20 of the items had a substantial or almost perfect ҡWeight and 23 showed a moderate ҡWeight. None of the items showed systematical differences. The Delphi technique procedure was used on the 22 items with ICC < 0.70 resulted in adjustments establishing that consensus was achieved.ConclusionsUndertaking this multi-step, cross-cultural adaptation procedure has effectively ensured that the 46-item Flodén ATODAI [North American version] produces valid and reliable measurements.

Use of Telehealth to Expand Living Kidney Donation and Living Kidney Donor Transplantation

Living donor kidney transplantation (LDKT) remains the treatment of choice for suitable candidates with advanced kidney disease. Despite excellent outcomes for living kidney donors, the rate of living kidney donation has remained relatively stable over the past decade despite the growing number of those in need of kidney transplants. Telehealth may represent an opportunity to increase access to evaluation and donation for living donor candidates and improve care and follow-up of living donors. This review discusses current and potential opportunities in the utilization of telehealth throughout the donation process. There are numerous computer-based and mobile application (app) resources for living kidney donor candidates and patients with advanced kidney disease listed for kidney transplantation which provide education on LDKT. Many of these apps allow for home education and interactions to occur without the need for travel. Donor advocacy is being seen increasingly on social media campaigns via apps. Additionally, donor candidates are often able to go online and refer themselves directly to transplant centers which can be done at any time. Finally, the use of mobile apps and telehealth videoconferencing may improve transplant center compliance with postdonation regulatory requirements for living kidney donors. Although regulatory, reimbursement, and privacy requirements will need to be addressed, telehealth appears to be an important opportunity to engage living kidney donor candidates and donors. By increasing living donor recruitment and LDKT, the widening chasm of organ supply and demand may narrow.

Evaluation and care of international living kidney donor candidates: Strategies for addressing common considerations and challenges.

End-stage kidney disease patients in the United States may have family members or friends who are not US citizens or residents but are willing to serve as their living kidney donor in the United States ("international donors"). In July 2017, the American Society for Transplantation (AST) Live Donor Community of Practice (LDCOP) convened a multidisciplinary workgroup of experts in living donation care, including coordinators, social workers, donor advocates, administrators, and physicians, to evaluate educational gaps related to the evaluation and care of international donors. The evaluation of international living donor candidates is a resource-intensive process that raises key considerations for assessing risk of exploitation/inducement and addressing communication barriers, logistics barriers, and access to care in their home country. Through consensus-building discussions, we developed recommendations related to: (a) establishing program guidelines for international donor candidate evaluation and selection; (b) initial screening; (c) logistics planning; (d) comprehensive evaluation; and (e) postdonation care and follow-up. These recommendations are not intended to direct formal policy, but rather as guidance to help programs more efficiently and effectively structure and execute evaluations and care coordination. We also offer recommendations for research and advocacy to optimize the care of this unique group of living donors.

116.7: Development and translation and of the psychometric Flodén ATODAI into the Swedish version.

Background: There is a lack of published, validated questionnaires for evaluating the attitudes toward organ donor advocacy among intensive care unit (ICU) staff. Specific behavior among ICU staff is significantly associated with if there is consent to, or decline of, organ donation. In 2011, Flodén et al. developed the questionnaire “Attitudes towards organ donor advocacy scale” (ATODAS). Through the translation and cross-cultural adaption of the ATODAS into English, the questionnaire was further developed resulting in the “Flodén ATODAI North American version” (Attitudes Toward Organ Donor Advocacy Instrument). Therefore, the Aim of this study is to develop and psychometrically evaluate the instrument Flodén ATODAI into the Swedish version, for measuring intensive and critical-care nurses’ attitudes toward organ donor advocacy. Methods: A cross-sectional study was employed as the study design. Data was collected separately for the two included studies. Study subjects were Swedish nurses who currently worked in a Swedish ICU. For the major data collection (n=715), participants were identified by the Swedish association of health professionals. For the test-retest (n=33), participants were identified at an ICU at a Swedish county hospital. The validation of the Flodén ATODAI was performed in several steps: • Construct validity with Exploratory Factor Analysis, Kaiser-Mayer-Olkin, Bartlett’s test and Scree plot • Internal validity with Discriminant and Convergent validity, Scaling success, and Cronbach’s alpha • External validity with Known-groups validation, and • Reliability testing with test-retest and Intraclass Correlation Coefficient Results: The Exploratory Factor Analysis showed that the previously used five-factor solution of the questionnaire just agreed partially, but not entirely, which motivated this study of instrument development. Internal and external validation was performed. Known-groups validation revealed significant differences between the ICU nurses with a designated role in organ donation and neuro-ICU nurses, compared to the general ICU nurses. The six factors identified of the Flodén ATODAI showed good reliability in the test-retest analysis and the Intraclass Correlation Coefficient. Conclusions: The modified Flodén ATODAI [Swedish version] may be a reliable and valid tool for measure attitudes toward organ donor advocacy among ICU nurses. Anticipated or potential outcomes of this study may include: Evaluation of baseline attitudes of ICU nurses that can lead to tailored professional development; Changes in organizational structure related to organ donation; and Increased understanding of critical care nurses and the barriers to organ donation.

31. Living Liver Donor Evaluation and Acceptance at a Newly Established Liver Transplant Centre

Background and Aims: Live donor liver transplantation (LDLT) is a crucial source of donor livers in societies where deceased donor liver transplantation (DDLT) activity is low. We report outcomes of evaluation of potential living donors at a newly established transplant unit is a new 550 bedded multi-specialty hospital in Mumbai. The aim of this study was to identify reasons for donor acceptance and rejection; and study outcomes of recipients when living liver-donors were rejected during the assessment process. Methods: Between May 2017 and May 2018, a total of 50 living donors were evaluated for liver donation at Apollo Hospitals Mumbai. Donor evaluation is divided into 4 phases: 1st-liver quality assessment, 2nd-assessment of liver volumes and anatomy, 3rd-cardiopulmonary evaluation, 4th-consultations and meeting with the independent donor advocate. Results: Overall 50 donors were evaluated for 42 recipients (32 adults, 10 children), 35 recipients had 1 donor, 6 recipients had 2 donors,1 recipient had 3 donors evaluated. The median age of the donor was 35.5 year (19–56 years), 28 were females and 22 males. A total of 17 donors were children of adult recipients, 12 were parents, 6 were siblings, 6 were spouses, and 13 were second degree relatives. Out of 50 donors evaluated, 26 donors donated part of their livers, and 24 were rejected. The causes for rejection of donors was steatosis (n = 8, Phase-1), anatomy and volumes (n = 5, Phase-2), withdrawal of donor consent (n = 5), and recipient related causes (n = 6). Of the 19 recipients whose donors were rejected, 7 died, 4 are awaiting DDLT, 3 had DDLT, 3 had LDLT with a second donor, and the recipient's condition improved such that patients were delisted or suspended in two. A total of 26 patients underwent LDLT - 17 had right lobe, 8 had left lateral, 1 left lobe donation. Mean ICU stay in donors was 1 day and, hospital stay was 5–8 days. Recipient and graft survival at 90 days in this cohort was 92.3%. Conclusions: Some 48% of evaluated donors were rejected during evaluation. The most common cause of donor rejection was liver steatosis. A total of 36% recipients whose potential LDLT donors were rejected died during the waiting period. LDLT remains an essential source of donor livers when DDLT activity is low. The authors have none to declare.

Decision-making, knowledge, and psychosocial outcomes in pediatric siblings identified to donate hematopoietic stem cells

Purpose: To (a) describe the decision-making experience and psychosocial outcome of sibling hematopoietic stem cell (HSC) donors, and (b) to determine the feasibility of completing a prospective and longitudinal assessment of HSC sibling donors at a single institution.Design: A mixed-methods approach was utilized.Sample and methods: 12 potential siblings HSC donors aged 10–21 years completed various psychological measures and participated in semi-structured interviews at three time points in the donation experience: pre-donation, within 1 week after the harvest procedure, and six months post-donation. Caregivers also completed parent-proxy measures.Findings: Qualitative analysis indicated donors want to make their own decision about donation but may not be given the option or may feel that there is no choice given their limited awareness of alternative options. Donors felt well prepared for the donation procedure but demonstrated a poor understanding of possible recipient outcomes. A minority of donors endorsed emotional distress prior to and after donation; however, this was not linked to recipient health. Forty percent of donors felt that they had inadequate support following their donation. Small sample size restricted quantitative data analysis.Conclusions and implications: Utilizing a donor advocate offers opportunity to work with donors to encourage decision-making tied to ideals rather obligation, increase education about possible recipient outcomes, and offer support at key times, such as when a recipient dies. Future research should include prospective multi-site studies.

Establishing a Living Donor Kidney Transplant Program in a Sub-Saharan African Country

Background Renal replacement therapy utilizing dialysis or kidney transplantation is the standard of care for patients with end stage renal disease, with transplantation as the preferred approach. Until a few years ago, transplantation was unavailable, and almost unthinkable, in Ethiopia. However, with the collaboration of the Ethiopian Ministry of Health and the University of Michigan, we have established a successful kidney transplant program in the Ethiopian capital. We sought to describe the socio-demographic characteristics and surgical outcomes of living kidney donors at our nascent program. Methods We retrospectively analyzed all living kidney donors who underwent donor nephrectomy at the Ethiopian Ministry of Health National Kidney Transplant Center, located at St. Paul’s Hospital Millennium Medical College in Addis Ababa, between September 2015 to August 2017. All donors were evaluated by nephrologists, surgeons, and a psychiatrist. The psychiatrist also served the role of independent donor advocate. Results A total of 52 living donor nephrectomies were performed in the first two years of the clinical program. Of these donors, 28 (53.8 %) were female. Donor age ranged from 21to 66 with a mean of 32.8 years. Mostly donors were siblings (44.2%) or parents (13.5%) of the recipient. The first 42 donors received hand-assisted laparoscopic donor nephrectomies (HALDN), with a conversion rate of 6.7 %. More recently, a mini-incision (~10 cm) open donor nephrectomy technique has been utilized. All nephrectomies were left-sided, with 48 (92.3%) of the donors having single renal artery anatomy. The mean operative time and estimated blood loss were 159 minutes and 160 ml, respectively, for HALDN, and 126 minutes and 220 ml,, respectively, for the open approach. Only 3 patients had early post-operative complications, with one patient suffering an unexplained SBO, one having superficial surgical site infection and one suffering from Atelectasis. No donors died or demonstrated renal failure during the study period. Conclusions The donor evaluation process and surgical approach are similar to transplant centers in other countries with well-established transplant systems, and include the use of an independent donor advocate. For our growing Ethiopian transplant program, outcomes for living kidney donors are excellent over the last 2 years, and are comparable to established international transplant standards. Key words – transplant, living kidney donor, outcome

The Will Reconsidered: Hard Choices in Living Organ Donation.

In the following article, we illustrate an interview between a living donor advocate and a potential living organ donor in which the donor faced a hard choice: the reasons to donate and the reasons not to donate were equally persuasive. In the discussion that follows, we analyze the act of willing, what differentiates coercion and willing, and how the case study highlights a different, but by no means rare, instance in which donors feel paralyzed by the choice at hand. In such cases, we suspect that donor advocates either do not approve the potential donor for transplantation or simply remain neutral. But we think that this approach benefits neither the donor nor the recipient. We conclude this study with recommendations for living donor advocates, providing questions that might solicit donors' deeper values and suggesting that in these situations donors may benefit from additional time for reflection.