Danielle L. Cornell

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.

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.

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.

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.

Report of a Consensus Conference on Transplant Program Quality and Surveillance

Public reports of organ transplant program outcomes by the US Scientific Registry of Transplant Recipients have been both groundbreaking and controversial. The reports are used by regulatory agencies, private insurance providers, transplant centers and patients. Failure to adequately adjust outcomes for risk may cause programs to avoid performing transplants involving suitable but high‐risk candidates and donors. At a consensus conference of stakeholders held February 13–15, 2012, the participants recommended that program‐specific reports be better designed to address the needs of all users. Additional comorbidity variables should be collected, but innovation should also be protected by excluding patients who are in approved protocols from statistical models that identify underperforming centers. The potential benefits of hierarchical and mixed‐effects statistical methods should be studied. Transplant centers should be provided with tools to facilitate quality assessment and performance improvement. Additional statistical methods to assess outcomes at small‐volume transplant programs should be developed. More data on waiting list risk and outcomes should be provided. Monitoring and reporting of short‐term living donor outcomes should be enhanced. Overall, there was broad consensus that substantial improvement in reporting outcomes of transplant programs in the United States could and should be made in a cost‐effective manner.

Pediatric organ donation: what factors most influence parents' donation decisions?

Objective: To identify factors that influence parents’ decisions when asked to donate a deceased child’s organs. Design: Cross-sectional design with data collection via structured telephone interviews. Setting: One organ procurement organization in the Southeastern United States. Participants: Seventy-four parents (49 donors, 25 nondonors) of donor-eligible deceased children who were previously approached by coordinators from one organ procurement organization in the southeastern United States. Interventions: None. Measurements and Main Results: Multivariate analyses showed that organ donation was more likely when the parent was a registered organ donor (odds ratio [OR] = 1.4, confidence interval [CI] = 1.1, 2.7), the parent had favorable organ donation beliefs (OR = 5.5, CI = 2.7, 12.3), the parent was exposed to organ donation information before the child’s death (OR = 2.6, CI = 1.7, 10.3), a member of the child’s healthcare team first mentioned organ donation (OR = 1.4, CI = 1.2, 3.7), the requestor was perceived as sensitive to the family’s needs (OR = 0.4, CI = 0.2, 0.7), the family had sufficient time to discuss donation (OR = 5.2, CI = 1.4, 11.6), and family members were in agreement about donation (OR = 2.8, CI = 1.3, 5.2). Conclusions: This study identifies several modifiable variables that influence the donation decision-making process for parents. Strategies to facilitate targeted organ donation education and higher consent rates are discussed.

A 10-year analysis of organ donation after cardiac death in the United States.

Background. The greatest challenge facing transplantation today is how to increase the number of organ donors. Patients with severe brain injury who are not brain-dead can donate organs after they are removed from a ventilator and allowed to die, termed donation after cardiac death (DCD). Methods. We analyzed the database of all organs recovered from deceased donors in the United States from 1994 through 2003 to determine DCD trends in the United States. The database was obtained from the United Network for Organ Sharing (UNOS). Results. There were 57,681 deceased donors reported from 1994 through 2003. Of these, 1,177 were donors without a heartbeat (DWHB), 55,206 were brain dead donors, and 1,298 were unspecified donors. At least one organ was transplanted from 1010 of the 1177 DWHB. Organ procurement organizations (OPOs) reported 0–212 DWHB accounting for up to 12.3 percent of deceased donors. There was a steady annual increase in the number of DWHB, but in 2003 there were still 19 of 59 OPOs that recovered no DWHB. A total of 2,231 organs were transplanted from the 1,177 DWHB donors, and another 665 organs were recovered for transplantation but not transplanted. The transplanted organs included 1,779 kidneys, 395 livers, 54 pancreata, 2 lungs, and 1 heart. Organs from DWHB can be successfully transplanted. Conclusions. Wider use of DWHB has the potential to greatly increase the number of organ transplants performed each year in the United States.

CMS oversight, OPOs and transplant centers and the law of unintended consequences

Abstract:  The Health Resources and Services Administration launched collaboratives with the goals of increasing donation rates, increasing the number of organs transplanted, eliminating deaths on the waiting list and improving outcomes. The Center for Medicare and Medicaid Services (CMS) recently published requirements for organ procurement organizations (OPOs) and transplant centers. Failure to meet CMS performance measures could result in OPOs losing their service area or transplant centers losing their CMS certification. CMS uses analyses by the Scientific Registry of Transplant Recipients (SRTR) to evaluate a transplant center’s performance based on risk‐adjusted outcomes. However, CMS also uses a more liberal (one‐sided) statistical test rendering more centers likely to qualify as low performing. Furthermore, the SRTR model does not incorporate some important patient variables in its statistical model which may result in biased determinations of quality of care. Cumulatively, there is much unexplained variation for transplant outcomes as suggested by the low predictive ability of survival models compared to other disease contexts. OPOs and transplant centers are unlikely to quietly accept their elimination. They may take certain steps that can result in exclusion of candidates who might otherwise benefit from transplantation and/or result in fewer transplants through restricted use of organs thought to carry higher risk of failure. CMS should join with transplant organizations to ensure that the goals of the collaborative are not inhibited by their performance measures.

The Instability of Organ Donation Decisions by Next-of-Kin and Factors That Predict It

We examined the instability of organ donation decisions made by next‐of‐kin and factors that predict whether nondonors wish they had consented to donation. Next‐of‐kin of donor‐eligible individuals from one organ procurement organization participated in a semistructured telephone interview. Participants were asked if they would make the same decision if they had to make it again today. Of the 147 next‐of‐kin donors, 138 (94%) would make the same decision again, 6 (4%) would not consent to donation and 3 (2%) were unsure. Of the 138 next‐of‐kin nondonors, 89 (64%) would make the same decision again, 37 (27%) would consent to donation and 12 (9%) were unsure. Regret among nondonors was more likely when the next‐of‐kin had more favorable transplant attitudes (OR = 1.76, CI = 1.15, 2.69), had the first donation discussion with a non‐OPO professional (OR = 0.21, CI = 0.13, 0.65), were not told of their loved ones death before this discussion (OR = 0.23, CI = 0.10, 0.50), did not feel they were given enough time to make the decision (OR = 0.25, CI = 0.11, 0.55), had not discussed donation with family members (OR = 0.30, CI = 0.13, 0.72) and had not heard a public service announcement about organ donation (OR = 0.29, CI = 0.13, 0.67). Organ procurement organizations (OPOs) should consider targeting these variables in educational campaigns and donation request approaches.

Family Initiated Discussions About Organ Donation at the Time of Death

Rodrigue JR, Cornell DL, Krouse J, Howard RJ. Family initiated discussions about organ donation at the time of death.
Clin Transplant 2010: 24: 493–499.
© 2009 John Wiley & Sons A/S.