Outcomes for individuals turned down for living kidney donation.

BACKGROUND: A better understanding of the consequences of being turned down for living kidney donation could help transplant professionals to counsel individuals considering donation. METHODS: In this exploratory study, we used survey instruments and qualitative interviews to characterize nonmedical outcomes among individuals turned down for living kidney donation between July 1, 2010 and December 31, 2013. We assembled a comparator group of kidney donors. RESULTS: Among 83 turned-down donors with contact information at a single center, 43 (52%) participated in the study (median age 53 years; 53% female; 19% black). Quality of life, depression, financial stress, and provider empathy scores were similar between individuals turned down for donation (n = 43) and donors (n = 128). Participants selected a discrete choice response to a statement about the overall quality of their lives; 32% of turned-down donors versus 7% of donors (P < 0.01) assessed that their lives were worse after the center's decision about whether they could donate a kidney. Among turned-down donors who reported that life had worsened, 77% had an intended recipient who was never transplanted, versus 36% among individuals who assessed life as the same or better (P = 0.02). In interviews, the majority of turned-down donors reported emotional impact, including empathy, stress, and other challenges, related to having someone in their lives with end-stage kidney disease. CONCLUSIONS: Generic instruments measuring quality of life, depression, financial stress, and provider empathy revealed no significant differences between kidney donors and turned-down donors. However, qualitative interviews revealed preliminary evidence that some turned-down donors experienced emotional consequences. These findings warrant confirmation in larger studies.

Assessment of donor satisfaction as an essential part of living donor kidney transplantation: an eleven-year retrospective study.

Living kidney donors seem highly satisfied with donation. However, previous studies measure satisfaction by a single-item or by simply questioning donors' willingness to donate again or to recommend living donation. With the aim of analyzing whether satisfaction with donation is a multidimensional construct, thus allowing a more specific characterization of dissatisfied donors, 332 living kidney donors (2005-2015) answered a renewed version of the European Living Donation and Public Health Project satisfaction survey. Exploratory factor-analyses suggested that satisfaction was composed of three-factors: violation of donors' expectancies about donation; interference of donation on daily activities, and pain and discomfort. Donors reported high levels of satisfaction. However, cluster-analysis identified a subgroup characterized by a higher discrepancy between the expected and the actually experienced during donation, higher interference on daily activities, and higher pain and discomfort. Most of them considered that hospital discharge was premature, suffered economic losses and perceived worse health outcomes of their recipients. Single questions assessing donors' willingness to donate again or to recommend living donation were unable to differentiate between clusters. In summary, donor's satisfaction seems better characterized by three dimensions than by single questions.

Factors associated with perceived donation-related financial burden among living kidney donors.

The perception of living kidney donation-related financial burden affects willingness to donate and the experience of donation, yet no existing tools identify donors who are at higher risk of perceived financial burden. We sought to identify characteristics that predicted higher risk of perceived financial burden. We surveyed 51 living kidney donors (LKDs) who donated from 01/2015 to 3/2016 about socioeconomic characteristics, predonation cost concerns, and perceived financial burden. We tested associations between both self-reported and ZIP code-level characteristics and perceived burden using Fisher's exact test and bivariate modified Poisson regression. Donors who perceived donation-related financial burden were less likely to have an income above their ZIP code median (14% vs. 72%, P = .006); however, they were more likely than donors who did not perceive burden to rent their home (57% vs. 16%, P = .03), have an income <$60 000 (86% vs. 20%, P = .002), or have had predonation cost concerns (43% vs. 7%, P = .03). Perceived financial burden was 3.6-fold as likely among those with predonation cost concerns and 10.6-fold as likely for those with incomes <$60 000. Collecting socioeconomic characteristics and asking about donation-related cost concerns prior to donation might allow transplant centers to target financial support interventions toward potential donors at higher risk of perceiving donation-related financial burden.

The Lived Experience of "Being Evaluated" for Organ Donation: Focus Groups with Living Kidney Donors.

BACKGROUND AND OBJECTIVES: Comprehensive evaluations are required to safeguard voluntarism and minimize harm to living kidney donors. This process is lengthy, invasive, and emotionally challenging, with up to one fifth of potential donors opting out. We aimed to describe donors' experiences of the evaluation process. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We conducted 14 focus groups involving 123 kidney donors who completed donation from three transplant centers (Australia and Canada). Transcripts were analyzed thematically. RESULTS: We identified six themes reflecting donors' experiences of evaluation. The themes that related to perseverance included emotional investment (prioritizing the recipient's health, desperation for a normal life, protecting eligibility, shame of disappointing others, and overcoming opposition), undeterred by low risks (medical confidence and protection, worthwhile gamble, inherent invincibility, and normalizing risks), and mental preparation (avoiding regret, resolving decisional ambivalence, and managing expectations of recovery). The challenges included underlying fears for health (processing alarming information, unsettling uncertainty, and preoperative panic), system shortfalls (self-advocacy in driving the process, stressful urgency, inconsistent framing of safety, unnerving bodily scrutiny, questioning risk information, and draining finances); and lifestyle interference (living in limbo, onerous lifestyle disruption, and valuing flexibility). CONCLUSIONS: Previous donors described an emotional investment in donating and determination to protect their eligibility, despite having concerns for their health, financial and lifestyle disruption, and opposition from their family or community. Our findings suggest the need to prepare donors for surgery and recovery, minimize anxiety and lifestyle burdens, ensure that donors feel comfortable expressing their fears and concerns, reduce unnecessary delays, and make explicit the responsibilities of donors in their assessment process.

A multicenter cohort study of potential living kidney donors provides predictors of living kidney donation and non-donation.

This multicenter prospective potential living kidney donor cohort study investigated which sociodemographic and other factors predict progression to living kidney donation or donor withdrawal as little is known on this topic. Therefore, we examined data on individuals undergoing living donor assessment at seven hospitals in the United Kingdom. Multivariable logistic regression was used to explore the relationships between donor and recipient characteristics and likelihood of kidney donation. A total of 805 individuals presented for directed donation to 498 intended recipients, of which 112 received a transplant from a living donor. Potential donors were less likely to donate if their intended recipient was female rather than male with an odds ratio of 0.60, a friend rather than relative 0.18, or had renal failure due to a systemic disease rather than another cause 0.41. The most socioeconomically deprived quintile was less likely to donate than the least 0.49, but the trend with deprivation was consistent with chance. Higher body mass index was associated with a lower likelihood of donation (odds ratio per each kg/m2 increase, 0.92). Younger potential donors (odds ratio per each year increase 0.97), those of nonwhite ethnicity 2.98, and friend donors 2.43 were more likely to withdraw from work-up. This is the first study in the United Kingdom of potential living kidney donors to describe predictors of non-donation. Qualitative work with individuals who withdraw might identify possible ways of supporting those who wish to donate but experience difficulties doing so.

Psychosocial assessment of living kidney donors: What implications have temperament and character for decision-making?

OBJECTIVE: We compared the personality of kidney donor candidates to non-donor controls and analyzed the personality profile of candidates psychosocially at risk. METHODS: 49 consecutive living kidney donor candidates underwent an extensive psychosocial evaluation. Psychosocial risk factors concerning knowledge of donation risks (1), donor-recipient-relationship (2), and/or mental health (3) were rated on a 3-point rating scale (0=high risk, 2=no risk). Furthermore, candidates as well as 49 age-and gender-matched non-donor controls filled in questionnaires concerning psychological distress (Symptom Checklist 90-R) and personality (Temperament and Character Inventory). RESULTS: There were no significant differences between candidates and controls concerning psychological distress or personality. Psychosocial assessment identified 13 candidates (26.5%) with increased psychosocial risk. This group displayed compared to candidates without psychosocial risk no difference concerning age, gender, formal education, donor-recipient relationship and psychological distress. However, this group scored significantly higher on reward dependence compared to suitable donors and controls (p<0.05). Reward dependence was associated with a lack of adequate knowledge on donation (r=-0.35, p<0.05). CONCLUSION: Reward dependence has important implications for decision-making, because it is associated with an increased tendency to deny potential risks of donation. Careful identification and assessment of reward dependent donor candidates is needed to ensure a free-willed decision.

Robotic partial nephrectomy - Evaluation of the impact of case mix on the procedural learning curve.

INTRODUCTION: Although Robotic partial nephrectomy (RPN) is an emerging technique for the management of small renal masses, this approach is technically demanding. To date, there is limited data on the nature and progression of the learning curve in RPN. AIMS: To analyse the impact of case mix on the RPN LC and to model the learning curve. METHODS: The records of the first 100 RPN performed, were analysed at our institution that were carried out by a single surgeon (B.C) (June 2010-December 2013). Cases were split based on their Preoperative Aspects and Dimensions Used for an Anatomical (PADUA) score into the following groups: 6-7, 8-9 and >10. Using a split group (20 patients in each group) and incremental analysis, the mean, the curve of best fit and R(2) values were calculated for each group. RESULTS: Of 100 patients (F:28, M:72), the mean age was 56.4 ± 11.9 years. The number of patients in each PADUA score groups: 6-7, 8-9 and >10 were 61, 32 and 7 respectively. An increase in incidence of more complex cases throughout the cohort was evident within the 8-9 group (2010: 1 case, 2013: 16 cases). The learning process did not significantly affect the proxies used to assess surgical proficiency in this study (operative time and warm ischaemia time). CONCLUSIONS: Case difficulty is an important parameter that should be considered when evaluating procedural learning curves. There is not one well fitting model that can be used to model the learning curve. With increasing experience, clinicians tend to operate on more difficult cases.

Emotional and Financial Experiences of Kidney Donors over the Past 50 Years: The RELIVE Study.

BACKGROUND AND OBJECTIVES: Most kidney donors view their experience positively, but some may experience psychosocial and financial burdens. We hypothesized that certain donor characteristics, poor outcome of the recipient, negative perceptions of care, and lack of support may be associated with poor psychosocial outcomes for donors. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: The Renal and Lung Living Donors Evaluation Study (RELIVE) examined long-term medical and psychosocial outcomes for kidney donors (at three U.S. transplant centers) who donated between 1963 and 2005. Standardized questionnaires evaluated donor perspectives, recovery time, social support, motivation, financial impact, insurability after donation, and current psychological status. Questionnaires were mailed to 6909 donors. RESULTS: Questionnaires were returned by 2455 donors, who had donated 17 ± 10 years earlier (range, 5-48 years), a response rate of 36%. Most (95%) rated their overall donation experience as good to excellent. Rating the overall donor experience more negatively was associated with donor complications, psychological difficulties, recipient graft failure, and longer time since donation. Nine percent (n=231) reported one or more of the following poor psychosocial outcomes: fair or poor overall donor experience, financial burden, regret or discomfort with decision to donate, or psychological difficulties since donation. Recipient graft failure was the only predictor for reporting one or more of these poor psychosocial outcomes (odds ratio, 1.77; 95% confidence interval, 1.33 to 2.34). Donors with lower educational attainment experienced greater financial burden. One of five employed donors took unpaid leave; 2% reported health and life insurability concerns. CONCLUSIONS: Although the majority of donors viewed their overall donation experience positively, almost 1 in 10 donors reported at least one negative consequence related to donation. Recipient graft failure was associated with poor psychosocial outcome, defined as one or more of these negative consequences. Some donors were financially disadvantaged, and some experienced insurance difficulties. Interventions to avoid negative psychosocial and financial consequences are warranted.

Latin Americans in Spain and their attitude toward living kidney donation.

INTRODUCTION: The Latin American (LA) population in Spain is ever increasing in size and is perfectly integrated into the social structure. The objectives were to analyze the attitude of citizens, born in Latin America and living in Spain, toward living kidney donation (LKD) and to determine the psychosocial variables affecting this attitude. MATERIAL AND METHODS: A sample of LA residents living in Spain was obtained randomly in 2010 and stratified according to the respondent's nationality (n = 1314). Attitude was evaluated using a validated questionnaire ("Proyecto Colaborativo Internacional Donante sobre Donación de Vivo Renal" Ríos). The survey was self-administered and completed anonymously. RESULTS: The questionnaire completion rate was 86% (n = 1.132). A total of 89% (n = 1003) were in favor of related living donation, and 30% if the donation were unrelated. The variables associated with attitude toward LKD were as follows: sex (p = 0.043); marital status (p = 0.013); previous experience of organ donation (p = 0.009); attitude toward deceased organ donation (p < 0.001); a respondent's belief that he or she could be a possible recipient of a future transplant (p < 0.001); knowledge of a partner's opinion (p = 0.021); family discussion about organ donation (p = 0.001); knowledge of the view of one's religion toward donation (p < 0.001); concern about "mutilation" after donation (p = 0.004); and evaluation of the risk from living donation (p = 0.036). CONCLUSIONS: The attitude of LA citizens residing in Spain was favorable both toward related LKD and unrelated living donation.

The live donor assessment tool: a psychosocial assessment tool for live organ donors.

BACKGROUND: Psychosocial evaluation is an important part of the live organ donor evaluation process, yet it is not standardized across institutions, and although tools exist for the psychosocial evaluation of organ recipients, none exist to assess donors. OBJECTIVE: We set out to develop a semistructured psychosocial evaluation tool (the Live Donor Assessment Tool, LDAT) to assess potential live organ donors and to conduct preliminary analyses of the tool's reliability and validity. METHODS: Review of the literature on the psychosocial variables associated with treatment adherence, quality of life, live organ donation outcome, and resilience, as well as review of the procedures for psychosocial evaluation at our center and other centers around the country, identified 9 domains to address; these domains were distilled into several items each, in collaboration with colleagues at transplant centers across the country, for a total of 29 items. Four raters were trained to use the LDAT, and they retrospectively scored 99 psychosocial evaluations conducted on live organ donor candidates. Reliability of the LDAT was assessed by calculating the internal consistency of the items in the scale and interrater reliability between raters; validity was estimated by comparing LDAT scores between those with a "positive" evaluation outcome and "negative" outcome. RESULTS: The LDAT was found to have good internal consistency, inter-rater reliability, and showed signs of validity: LDAT scores differentiated the positive vs. negative outcome groups. CONCLUSIONS: The LDAT demonstrated good reliability and validity, but future research on the LDAT and the ability to implement the LDAT prospectively is warranted.

Assessment of body image perception in patients undergoing laparoscopic nephrectomy.

AIM: Aim of the study was to evaluate body image perception (BIP) in patients undergoing laparoscopic nephrectomy (LN), comparing with open nephrectomy (ON). METHODS: LN had been performed on 36 (51%) patients, ON had been applied to 34(49%). At the preoperative and postoperative 3rd month, body dysmorphic disorder scale (BDDS) has been applied to patients in order to measure body image change. BDDS has been filled by posing questions to patient. RESULTS: The BDDS score in the postoperative period in patients in whom LN was performed has been higher in proportion to the preoperative period, and BIP has been bad (BDDS score=19.66 ± 6.08 and 15.22 ± 4.78, P=0.00, respectively). The mean BDDS points of patients in the group of ON at the preoperative and postoperative 3rd month have been 16.50 ± 7.04 and 24.23 ± 7.32, respectively. In the group of ON, BIP has been impairing in the post-operative period (P=0.000). There has been no statistically significant difference between LN and ON groups in terms of the pre-operative mean BDDS score (P=0.78). However, the mean BDDS score has been significantly lower in LN group at the postoperative 3rd month, and BIP has been better (P=0.01). A significant negative correlation has been detected between age and body image (P=0.001, r=-0.388). CONCLUSION: Although incisions in LN are smaller, BIP is impairing in the post-operative period. However, when compared to open surgery, BIP has been determined to be better. A significant correlation has been present between age and body image. LN is a more trustworthy surgical method particularly in young patients in terms of BIP too.

'Because you can't live on love': living kidney donors' perspectives on compensation and payment for organ donation.

CONTEXT AND OBJECTIVE: Living kidney donation accounts for approximately half of all kidney transplantation in many countries and is central to health policy focused on increasing organ supply. However, little examination of the economic consequences of living kidney donation has been undertaken from the perspective of donors themselves. This article documents living kidney donors' views regarding recompense and payment for organ donation, based on their experience. PARTICIPANTS: Twenty-five living kidney donors from New Zealand participated in this study. METHODS: This qualitative study, based on thematic analysis, uses semi-structured in-depth interviews to examine the experiences of living kidney donors. Themes were organized around altruism and the 'gift', perceptions of shared corporeality and identity, and donor support. RESULTS: Most participants agreed the donation process was costly in terms of time and money. Many incurred personal costs, and some experienced financial hardship. All the participants viewed financial hardship as a barrier to organ donation and favoured recompense for direct and indirect costs. Most did not support payment for organs, and none supported commercialization. DISCUSSION AND CONCLUSIONS: The findings show that framing organ donation as a 'gift' can stymie discussion about reciprocity, remuneration and exchange, making talk about financial recompense difficult. Financial well-being, nonetheless, has implications for the ability to care for self and others post-operatively. We conclude that the economic consequences for living kidney donors in jurisdictions where recompense for direct and indirect costs is insufficient are unfair. Review of financial assistance for live organ donors is therefore recommended.

Public attitudes and beliefs about living kidney donation: focus group study.

BACKGROUND: With the rising prevalence of end-stage kidney disease worldwide, the proportion of the general community who might subsequently be called upon to consider living related kidney donation is also increasing. Knowledge about the attitudes and beliefs among the general public about living kidney donation is limited. We aimed to describe public perspectives on living kidney donation. METHODS: Participants were recruited from three states in Australia to participate in 12 focus groups (n=113). Transcripts were analyzed thematically. RESULTS: We identified six themes: expected benefits (saving and improving life, societal gain, donor satisfaction, reassurance and control), consciousness of donor risks (compromised health, lifestyle limitations, financial consequences, relationship tensions, devastation), social precariousness (fear of the unknown, exploitative connotation, recipient deservingness, protecting conscience, potential regret), upholding fairness (equal access to transplantation, reciprocity, prevent prejudice, donor safety net), decisional autonomy (body ownership, right to know, valid relationships), and assumed duty of care (facilitate informed decision-making, safeguard against coercion, ensure psychological safety, justifiable risk, objectivity, warranted disclosure). CONCLUSION: The expected benefits for recipients bolster public support for living kidney donor transplantation; however, ethical dilemmas and concerns for the donor instilled ambivalence about living donation. Protecting equity and autonomy, and an implicit trust in health professionals to protect donors and recipients mitigated some of these uncertainties. Developing interventions, practices, and policies that address community skepticism and values may promote awareness and trust in living kidney donation.

Impact assessment in living kidney donation: psychosocial aspects in the donor.

BACKGROUND: Living donor kidney transplantation has a positive influence on graft survival and recipient quality of life (QoL). We assessed the psychosocial impact of donation to the donor. METHODS: Before and after the procedure 32 living kidney donors (mean age 41 years) completed the Zung Self-Rating Anxiety and Depression Scales; a Sociodemographic, Short-Form 36 Health Survey (SF-36), and a Donation Perceptions Questionnaire. RESULTS: Living kidney donors were siblings (62.5%), parents (34.4%), or a daughter (3.1%). Transplantation was not successful in two cases: one recipient death and one graft failure. No significant changes were observed in donor QoL except for the SF-36 social functioning subscale that showed significant improvement after donation (P = .038). A reduction in depression symptom frequency was verified after donation (from 65.6% to 46.9%). There was an almost significant decrease in depression scores (P = .077), which was in fact was significant when one considered only successful transplants (P = .021). There was no significant variation in anxiety scores among donors. Time since transplantation was inversely correlated with overall anxiety (r = .443, P = .011), and with somatic anxiety subscales (r = .357, P = .045). For most donors, the decision to donate was easy and spontaneous. Nearly all donors would donate again and strongly encourage others to donate. CONCLUSIONS: Except for the social functioning scale that improved, no significant changes were observed in QoL of living kidney donors after the procedure. Depression scores significantly decreased after donation, but anxiety scores remained stable. Donors, who were mostly siblings, showed positive perceptions about donation, did not regret their decision, and strongly recommend it to others.

Measuring the expectations of kidney donors: initial psychometric properties of the Living Donation Expectancies Questionnaire.

We report on the initial development and validation of the Living Donation Expectancies Questionnaire (LDEQ), designed to measure the expectations of living kidney donor candidates. Potential living donors (n=443) at two transplant centers were administered the LDEQ and other questionnaires, and their medical records were reviewed. Factor analysis provides support for six LDEQ scales: Interpersonal Benefit, Personal Growth, Spiritual Growth, Quid Pro Quo, Health Consequences, and Miscellaneous Consequences. All but one scale showed good internal consistency. Expected benefits of donation were associated with higher optimism and lower mental health; expected consequences of donation were associated with lower optimism and lower physical and mental health. More potential donors with relative or absolute contraindications had high Interpersonal Benefit (P<0.0001), Personal Growth (P<0.01), Quid Pro Quo (P<0.0001), and Health Consequences (P<0.0001) expectations. The LDEQ has promise in evaluating donor candidates' expectations.

Ethical issues surrounding high-risk kidney recipients: implications for the living donor.

Evaulating patients for living kidney donor transplantation involving a recipient with significant medical issues can create an ethical debate about whether to proceed with surgery. Donors must be informed of the surgical risk to proceed with donating a kidney and their decision must be a voluntary one. A detailed informed consent should be obtained from high-risk living kidney donor transplant recipients as well as donors and family members after the high perioperative risk potential has been explained to them. In addition, family members need to be informed of and acknowledge that a living kidney donor transplant recipient with pretransplant extrarenal morbidity has a higher risk of a serious adverse outcome event such as graft failure or recipient death. We review 2 cases involving living kidney donor transplant recipients with significant comorbidity and discuss ethical considerations, donor risk, and the need for an extended informed consent.

Racial differences in the living kidney donation experience and implications for education.

CONTEXT: Much has been written about the barriers to deceased organ donation in the African American community. However, relatively little research has been conducted on barriers to living donation among African Americans. A shortage of suitable deceased donor kidneys among African Americans has encouraged donation from living donors. OBJECTIVE: As a follow-up to several focus groups with health professionals about barriers to living donation and suggestions for educational interventions, we sought to determine kidney donors' thoughts and feelings about their donation. DESIGN: Telephone interviews with past donors. PARTICIPANTS: Nine African Americans and 9 whites were selected from a database of laparoscopic donor nephrectomies from 1993 to 2003. OUTCOME MEASURES: Transcribed phone interviews were reviewed by 3 researchers to determine recurring themes and categorize responses. RESULTS: Responses were categorized into 8 areas of concern: health, financial, life with 1 kidney, procreation, psychosocial matters, surgery related, success of the transplant, and concerns about the future. Whites (n = 9) tended to volunteer more for laparoscopic kidney donation than did African Americans (n = 2). African American concerns focused on future health and living with only 1 kidney, whereas whites had concerns about the surgery and the medical system. CONCLUSIONS: Findings indicated that education is the best way to reach living donors and dispell fears. Promoting general health of African Americans may increase their willingness to be a living donor. Altruistic motives are the main motivation for donation, and intervention programs should target groups on a personal level to help individuals see that they can make a difference in improving or saving lives.

Prospective psychosocial monitoring of living kidney donors using the SF-36 health survey.

BACKGROUND: Psychosocial assessment and monitoring of living kidney donors is not yet standard practice, despite calls for it in the literature. METHODS: Psychosocial assessment of living kidney donors was performed preoperatively and 4 months postoperatively, using the SF-36 Health Survey, the Patient Health Questionnaire psychiatric assessment, and semistructured interview. RESULTS: Assessment was acceptable to the majority of donors; 92% (44) of 48 consecutive donors completed both assessments. Preoperatively, both physical function (SF-36 Physical Component Score [PCS]) and psychosocial function (SF-36 Mental Component Score [MCS]) were significantly higher than community (state of Victoria) norms. Postoperatively, PCS and MCS fell significantly, but not below the Victorian norm. Seven donors (16%) developed adjustment disorder or anxiety disorder; their MCS were significantly lower than those without psychiatric disorder. CONCLUSIONS: It is concluded that routine psychosocial assessment performed by a psychiatrist, including the use of questionnaires, is acceptable to donors and identifies those impaired. Potential donors need to be well prepared for such assessment and well educated about the extent of physical and psychosocial impairment that might occur in the postoperative period.