James R. Rodrigue

Attitudes toward financial incentives, donor authorization, and presumed consent among next-of-kin who consented vs. refused organ donation.

Background. Financial incentives, donor authorization, and presumed consent are strategies designed to increase organ donation rates. Surveys designed to assess attitudes toward these initiatives have been conducted with the general public, transplant patients, and transplant professionals. Methods. To assess attitudes toward financial incentives, donor authorization, and presumed consent and to identify multivariate predictors of such attitudes, we conducted telephone interviews with 561 family members who had recently been asked for consent to donate the organs of a deceased family member (348 donors, 213 nondonors). Results. Financial incentives would have made a difference in the donation decision for 54% of nondonors (vs. 46% of donors, P=0.02), and a higher percentage of nondonors would themselves become donors if financial incentives were available (P=0.03). Donors had significantly more favorable attitudes toward donor authorization (P<0.0001) and presumed consent (P<0.0001) policies. Overall, 54% of participants thought that family permission for donation was unnecessary when the deceased documented their donation intention, and 24% favored a presumed consent law with an opting out provision. Conclusions. Of the three initiatives, donor authorization is likely supported by more donor and nondonor families than either financial incentives or presumed consent. Public education efforts should aim to better inform the public regarding existing and proposed donor authorization legislation and its benefits for registered organ donors and their families.

The Medical Evaluation of Living Kidney Donors: A Survey of US Transplant Centers

The use of living donors for kidney transplantation in the United States is common, and long‐term studies have demonstrated the safety of donation by young, healthy individuals. However, transplant programs have little data to guide them in deciding which donors are unacceptable, and which characteristics are associated with kidney disease or poor psychosocial outcomes after donation. To document current practices in evaluating potential donors, we surveyed all US kidney transplant programs. Compared to a survey 12 years ago, medical criteria for donation are more inclusive in several areas. All responding programs now accept living unrelated donors. Most programs no longer have an upper age limit to be eligible. Programs are now more likely to accept donors with treated hypertension, or a history of kidney stones, provided that certain additional criteria are met. In contrast, medical criteria for donation are more restrictive in other areas, such as younger donor age and low creatinine clearance. Overall, significant variability remains among transplant programs in the criteria used to evaluate donors. These findings highlight the need for more data on long‐term outcomes in various types of donors with potential morbidities related to donation.

Organ Donation Decision: Comparison of Donor and Nondonor Families

Family members continue to play a prominent role in donation decisions at time of death. This study examined the relative influence of donor and next‐of‐kin factors, requestor characteristics, communication processes and satisfaction with the health care team on the donation decision. Data were gathered via structured telephone interview with 285 next‐of‐kin of donor‐eligible deceased individuals who had been approached by coordinators from one organ procurement organization (OPO) in the southeastern USA from July 2001 to February 2004. Univariate and multivariate analyses showed that several variables were associated with the donation decision. Subsequent logistic regression analyses revealed that donation was more likely when the deceased was younger, white (OR = 3.20, CI = 1.3, 5.7) and had made his/her donation intentions known (OR = 4.35, CI = 2.6, 7.3), and when the next‐of‐kin had more favorable organ donation beliefs (OR = 8.72, CI = 5.2, 14.7), was approached about donation by an OPO coordinator (OR = 3.74, CI = 2.2, 6.4), viewed the requestor as sensitive to their needs (OR = 2.70, CI = 1.6, 4.5) and perceived the timing of the request as optimal (OR = 6.63, CI = 3.6, 12.1) (total regression model, chi square = 133.2, p < 0.001, 92.7% of cases correctly predicted). Findings highlight the need for continued public education efforts to maximize positive beliefs about organ donation, to share and document donation decisions and to improve communication processes among the OPO personnel, hospital staff and prospective donor families.

Psychosocial adaptation of fathers of children with autism, down syndrome, and normal development

Fathers have been largely neglected in previous research of families of autistic children. We compared fathers of 20 autistic, 20 Down syndrome, and 20 developmentally normal children on several measures of psychosocial adaptation. Groups were matched on childs adaptive behavior age equivalent, gender, birth order, family size, and SES. The three groups differed significantly on measures of intrapersonal and family functioning but not on social-ecological variables. Fathers of children with autism or Down syndrome reported more frequent use of wish-fulfilling fantasy and information seeking as coping strategies as well as more financial impact and disruption of family activities than did fathers of developmentally normal children. There were few significant differences between fathers of children with autism and those of children with Down syndrome. These results suggest that fathers adapt relatively well to the demands associated with raising a child with a developmental disability.

Increasing Live Donor Kidney Transplantation: A Randomized Controlled Trial of a Home-Based Educational Intervention

With the shortage of deceased donor kidneys and the superior clinical outcomes possible with live donor kidney transplantation (LDKT), more patients should seriously consider LDKT. However, little is known about how best to educate patients and their family members about LDKT. We evaluated the effectiveness of a home‐based (HB) educational program in increasing LDKT. Patients were randomized to clinic‐based (CB) education alone (CB, n = 69) or CB plus HB education (CB+HB, n = 63). Compared to CB, more patients in the CB+HB group had living donor inquiries (63.8% vs. 82.5%, p = 0.019) and evaluations (34.8% vs. 60.3%, p = 0.005) and LDKTs (30.4% vs. 52.4%, p = 0.013). Assignment to the CB+HB group, White race, more LDKT knowledge, higher willingness to discuss LDKT with others, and fewer LDKT concerns were predictors of having LDKT (p‐values < 0.05). Both groups demonstrated an increase in LDKT knowledge after the CB education, but CB+HB led to an additional increase in LDKT knowledge (p < 0.0001) and in willingness to discuss LDKT with others (p < 0.0001), and a decrease in LDKT concerns (p < 0.0001). Results indicate that an HB outreach program is more effective in increasing LDKT rates than CB education alone.

Evaluating living kidney donors: relationship types, psychosocial criteria, and consent processes at US transplant programs.

We conducted a survey of 132 US kidney transplant programs to examine how they evaluate and select potential living kidney donors, focusing on donor‐recipient relationships, psychosocial criteria, and consent processes. There is heterogeneity in donor‐recipient relationships that are considered acceptable, although most programs (70%) will not consider publicly solicited donors. Most programs (75%) require a psychosocial evaluation for all potential living donors. Most programs agree that knowledge of financial reward (90%), active substance abuse (86%), and active mental health problems (76%) are absolute contraindications to donation. However, there is greater variability in how other psychosocial issues are considered in the selection process. Consent processes are highly variable across programs: donor and recipient consent for the donor evaluation is presumed in 57% and 76% of programs, respectively. The use of 13 different informed consent elements varied from 65% (alternative donation procedures) to 86% (description of evaluation, surgery and recuperative period) of programs. Forty‐three percent use a ‘cooling off’ period. Findings demonstrate high variability in current practice regarding acceptable donor‐recipient relationships, psychosocial criteria, and consent processes. Whether greater consensus should be reached on these donor evaluation practices, especially in the context of more expansive use of living donor kidney transplantation, is discussed.

A comparative evaluation of adaptive behavior in children and adolescents with autism, Down syndrome, and normal development

The adaptive behaviors of 20 autistic, 20 Down syndrome, and 20 developmentally normal children were compared using the Vineland Adaptive Behavior Scale. Unlike previous studies, we included a comparison group of very young normally developing children and matched subjects on overall adaptive behavior as well as several pertinent demographic characteristics. Findings revealed that, relative to children with Down syndrome or normal development, autistic children displayed significant and pervasive deficits in the acquisition of adaptive social skills, and greater variability in adaptive skills. These findings underscore the need to longitudinally assess the development of socialization in autistic children and further highlight the utility of the Vineland in operationally defining the nature of social dysfunction in autistic children.

Consensus conference on best practices in live kidney donation: Recommendations to optimize education, access, and care

Live donor kidney transplantation is the best treatment option for most patients with late‐stage chronic kidney disease; however, the rate of living kidney donation has declined in the United States. A consensus conference was held June 5–6, 2014 to identify best practices and knowledge gaps pertaining to live donor kidney transplantation and living kidney donation. Transplant professionals, patients, and other key stakeholders discussed processes for educating transplant candidates and potential living donors about living kidney donation; efficiencies in the living donor evaluation process; disparities in living donation; and financial and systemic barriers to living donation. We summarize the consensus recommendations for best practices in these educational and clinical domains, future research priorities, and possible public policy initiatives to remove barriers to living kidney donation.

A Randomized Trial of a Home-Based Educational Approach to Increase Live Donor Kidney Transplantation: Effects in Blacks and Whites

BACKGROUND Blacks are disproportionately affected by chronic kidney disease, but are far less likely to undergo live donor kidney transplantation (LDKT) than whites. We assessed the differential effectiveness in blacks and whites of a home-based (HB) LDKT educational approach. STUDY DESIGN A planned secondary analysis of a previously published randomized trial. SETTING & PARTICIPANTS 132 patients (60 black, 72 white) approved for kidney transplantation at 1 kidney transplant center in the southeastern United States. INTERVENTION Assignment to receive either standard clinic-based (CB) transplant education (n = 69) or CB plus an HB (CB + HB) LDKT education program (n = 63). The HB education program was culturally sensitive for blacks, including using a minority health educator, brochures that highlight minority transplant recipients and donors, and discussion of race-specific outcome data. OUTCOMES Primary outcomes were proportions of patients with live donor inquiries, evaluations, and transplants 1 year after study participation. MEASUREMENTS Medical record and questionnaire data. RESULTS 69 patients were assigned to the CB group, and 63 to the CB + HB group. After 1 year, there were 96 living donor inquiries (72.7%), 62 living donor evaluations (47.0%), and 54 LDKTs (40.9%). Patients assigned to the CB + HB group were more likely to have had living donor inquiries (odds ratio [OR], 1.7; confidence interval [CI], 1.2 to 3.0), a living donor evaluated (OR, 2.7; CI, 1.4 to 5.4), and LDKT (OR, 3.0; CI, 1.5 to 5.9). The effect was greater in blacks than whites for living donor evaluations and LDKT, but not for living donor inquiries (treatment-by-race interaction, P < 0.001, P < 0.001, and P = 0.8, respectively). Blacks in the CB + HB group were more likely to have had at least 1 living donor inquiry (51.7% versus 77.4%), at least 1 living donor evaluated (17.2% versus 48.4%), and LDKT (13.8% versus 45.2%) than those in the CB group. By comparison, whites in the CB + HB group were more likely to have had at least 1 living donor inquiry (72.5% versus 87.5%), at least 1 living donor evaluated (47.5% versus 71.9%), and LDKT (42.5% versus 59.4%) than those in the CB group. LIMITATIONS Single-center study with greater dropout rate in the CB + HB group. CONCLUSIONS These results suggest that a culturally sensitive LDKT education program that reaches out to blacks and their social support network can overcome some barriers to LDKT in this population.

The decline in living kidney donation in the United States: Random variation or cause for concern?

The annual number of living kidney donors in the United States peaked at 6647 in 2004. The preceding decade saw a 120% increase in living kidney donation. However, since 2004, living kidney donation has declined in all but 1 year, resulting in a 13% decline in the annual number of living kidney donors from 2004 to 2011. The proportional decline in living kidney donation has been more pronounced among men, blacks, younger adults, siblings, and parents. In this article, we explore several possible explanations for the decline in living kidney donation, including an increase in medical unsuitability, an aging transplant patient population, financial disincentives, public policies, and shifting practice patterns, among others. We conclude that the decline in living donation is not merely reflective of random variation but one that warrants action by the transplant centers, the broader transplant community, and the state and national governments.