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Evaluating Deceased Donor Registries: Identifying Predictive Factors of Donor Designation [American Surgeon, The](American Surgeon, The Via Acquire Media NewsEdge) The objectives of this study were to evaluate and compare the performance of the deceased donor registries of the 50 states and the District of Columbia and to identify possible predictive factors of donor designation. Data were collected retrospectively by Donate Life America using a questionnaire sent to Donor Designation Collaborative state teams between 2007 and 2010. By the end of 2010, there were 94,669,081 designated donors nationwide. This accounted for 39.8 per cent of the U.S. population aged 18 years and over. The number of designated organ donors and registry-authorized recovered donors increased each year; however, the total number of recovered donors in 2010 was the lowest since 2004. Donor designation rate was significantly higher when license applicants were verbally questioned at the Department of Motor Vehicles (DMV) regarding their willingness to register as a donor and when DMV applicants were not given an option on DMV application forms to contribute money to support organ donation, compared with not being questioned verbally, and being offered an option to contribute money. State registries continue to increase the total number of designated organ donors; however, the current availability of organs remains insufficient to meet the demand. These data suggest that DMV applicants who are approached verbally regarding their willingness to register as a donor and not given an option on DMV application forms to contribute money to support organ donation might be more likely to designate themselves to be a donor. PATIENTS AWAITING ORGAN transplantation continue to suffer because of the chronic imbalance between demand and supply of organs. Although the number of patients on waiting lists has been increasing, the number of donors and organs available for transplantation has decreased in recent years.1, 2 This disparity leads to the death of thousands awaiting transplantation each year.3 During the past several years, numerous initiatives have been instituted to lessen the gap between the organ supply and demand; among these measures have been processes to enable people to indicate their willingness to be a deceased donor when they die. ''Donor cards,'' established decades ago, have been modernized with the establishment of online donor registries to document a person's wish to donate his or her organs after death. Donate Life America put together the Donor Designation Collaborative in 2006 to create high-functioning state donor registries with the goals of registering 100 million designated donors nationwide and achieving a cumulative donor designation rate of 50 per cent in the United States.4 All the states and the District of Columbia now have donor registries. There are some studies conducted in recent years evaluating the effect of public attitude, education, and ethnicity on donor designation in the United States3-9; however, these studies are mainly limited to the specific geographical regions and/or socioeconomical groups and have not investigated much, if at all, the influence of different elements in the registry application on the applicants' decision to be listed in the state donor registry. This study aims to describe and compare the current state of donor registries in the 50 states and the District of Columbia; to investigate their impact on organ supply for transplantation; and to identify possible factors that correlate with higher donor designation rates. We hypothesized that there are associations between the registry application process and the rate of registration. Therefore, we ascertained whether the Department of Motor Vehicles (DMV) clerks were required to verbally ask the applicants whether they wanted to designate themselves as a potential donor and whether applicants were offered the opportunity to donate money to support organ donation; we hypothesized that the former would be associated with increased designation rate and the latter would be associated with decreased designation rate (because we assumed that contributing money for organ donation would diminish the moral pressure to register as a donor). Identifying the predictive factors of donor designation may help increase the numbers of potential donors, which could in return benefit the patients on the deceased donor waiting lists. Materials and Methods The Donor Designation Collaborative (DDC) was launched in October 2006 as an initiative of Donate Life America to improve donation rates by ensuring that each state has an effective system for allowing individuals to designate themselves as donors by helping states create new registries or improve existing registries. Outcomes data on this initiative were collected quarterly by Donate Life America using a questionnaire sent to designated representatives for each state and the District of Columbia, all of which participate in the DDC. Designated representatives for each state and the District of Columbia were ultimately responsible for collecting data from each ''state registry'' and ''organ recovery organization'' serving the state, consolidating the data into a single report, and forwarding it to Donate Life America. The data included: the total number of donors registered in donor registry, the number of driver license/ID card applicants designated as donors, the number of driver license/ID card issued by the DMV, the number of recovered organ donors authorized by registry, and the total number of recovered organ donors. We conducted a retrospective review of these data for the years 2007 through 2010. Through a separate questionnaire, we also determined which states required clerks to verbally ask applicants whether they want to be a designated donor and whether the application allows for applicants to donate money to support organ donation. Descriptive statistics were calculated and tabulated using SPSS statistical software, Version 15 (SPSS Inc., Chicago, IL) and SigmaPlot software, Version 11 (Systat Software Inc., Erkrath, Germany). A P value < 0.05 was considered statistically significant. Results The total number of designated donors rose from 63,222,077 in the beginning of 2007 to 94,669,081 at the end of 2010; the latter represents 39.8 per cent of the U.S. population aged 18 years and older. California had the highest number of total designated donors (7.7 million) in the country; however, the state's Donor Designation Rate of 27.4 per cent places it among states with the lowest percentile. The geographical distribution of states in terms of percentage of registered adults is illustrated in Figure 1. ''Percentage of registered adults'' is the percentage of designated donors in the adult population of a state. ''Donor designation rate'' is the percentage of people issued a driver license or ID card (first-time applicants and renewal applicants) who join the state registry per year. In 2007, 2008, 2009, and 2010, only 13, 23, 23, and 30 states were able to accurately track their donor designation rates, respectively; District of Columbia was also able to track its numbers in all four years (the 13 states and District of Columbia who reported their donor designation rates in 2007 continued to report their rates in 2008, 2009, and 2010 as well). The overall donor designation rate for the states was 33.4, 36.3, 34.7, and 38.3 per cent per year in 2007, 2008, 2009, and 2010, respectively. In 2010, Alaska, Colorado, and Montana were top three states in terms of donor designation rate with the designation rate of 76 , 65.6, and 63.2 per cent, respectively; New York (12.2%), Michigan (16.3%), and Nevada (16.4%) had the lowest donor designation rates. A ''recovered organ donor'' is defined as a deceased individual whose organs have been recovered and donated to another individual regardless of his or her status as a registered donor. If a recovered organ donor had already been registered as a donor, we use the term ''registry authorized.'' Nationwide, 32.7 per cent of recovered organ donors in 2010 were authorized by state donor registries, which showed improvement over previous years. The trend for the number of recovered organ donors over the study period is shown in Figure 2. Table 1 compares the ''percentage of registered adults,'' ''donor designation rate,'' and ''percentage of recovered donors via registry authorization'' of the 50 states and the District of Columbia as of January 2011. We studied the predictive value of two variables, ''DMV clerk'' and ''solicitation of cash contribution,'' on designation rate in four separate time periods (2007, 2008, 2009, and 2010). Fourteen states did not authorize systematic verbal prompting by clerks, whereas 36 states and the District of Columbia used prompting by clerks. Twenty-three states and the District of Columbia did not offer their applicants an option to contribute money, whereas 27 states had such an option. The designation rates were significantly higher in all time periods when DMV clerks were verbally asking applicants regarding their willingness to register as a donor compared with the absence of verbal questioning. Moreover, the designation rates were significantly higher in all time periods when there was not an option for applicants to contribute money for organ donation compared with the presence of this option. Variables and their associations with donor designation rate are demonstrated in Table 2 and Figure 3. Additionally, we noted a considerable difference in the state populations between states with the highest and lowest designation rates. The top three states in terms of designation rates in 2010 (Alaska, Colorado, and Montana) had a mean adult population of less than two million, whereas three states with the lowest designation rate (New York, Michigan, and Nevada) had a mean adult population of above eight million. Discussion Organ transplantation is one of medicine's ''success stories''8; however, donation of organs has not kept pace with the rising demand. In the United States, there are currently 110,535 individuals on the transplant waiting list, and 6,375 patients died in 2010 while on the waiting list.2 Efforts to increase the donor organ supply in recent years include the expansion of donor criteria, the increased use of donors after cardiac death, and the development of programs that encourage people to designate themselves as donors upon their death through enrollment in state donor registries.10-12 One reason families refuse to consent to allow a deceased patient to be an organ donor is that they do not know whether the patient would have wanted to be an organ donor. It is also well documented that families rarely decline permission for donation against their loved ones' wishes.3, 11, 13, 14 Because designated donor registries can serve to clarify an individual's desire for organ donation,3 they serve as an effective tool to reduce the number of times families turn down the option for their deceased family member to be a donor. Every state now offers its residents an opportunity to register as a donor and many states are successfully increasing the rate of registration. However, despite all the efforts over the past 10 years to increase organ donation rates, the available supply of organs for deceased donor transplantation has reached a plateau in the United States.12, 15, 16 The total number of recovered donors has remained virtually unchanged since 2006. The number of recovered donors in 2010 was 8040, whereas the highest number of recovered donors in recent years was 8085 in 2007.2 Therefore, the increased number of registered donors has not led to an increased number of organ donors in recent years. However, registries are unlikely to have a large short-term impact on deceased organ supply because a substantial percentage of the newly registered population is young. Additionally, it has been shown that there are factors other than designation rates affecting the number of organ donors; these factors include the number of road traffic accidents, the number of transplant centers, gross domestic product per capita, and health expenditure per capita.17, 18 We chose to focus on the ''donor designation rate'' of license and state ID applicants.We assumed that the designation rate is strongly influenced by the donor registry application process, whereas the percentage of designated donors in the population might be more strongly influenced by how long the registry has been in existence. Donor designation rates showed significant variability across different geographic regions in the country. Approaching the DMVapplicants verbally was associated with a higher number of designation rates. On the other hand, soliciting contributions for the ''organ donation'' networks from the applicants was associated with a decreased rate of designation. A study from Purdue University in the United States showed that training DMV clerks is an effective way to increase their knowledge, attitudes, and beliefs toward organ donation and may increase donor registration rates among the public.19 This study showed that a onehour training intervention significantly increased DMV clerks' knowledge and attitude toward donation and improved their communication skills in interacting with the public. It also showed that organ donor registration rates were higher in counties where clerks were trained than in control counties without trained clerks.19 Also, investigators from University of Sydney in Australia report that personal discussion during driving license renewal may increase the number of donor registration.20 These reports are consistent with the data we present from several states that support the positive association between approaching DMV applicants verbally and higher donor designation rates. Our article also presents new data regarding the association between asking for monetary donations and lower designation rates. We think that an option on DMV application forms to voluntarily contribute money to support organ donation could be minimizing the moral pressure on the applicants to register as a donor. This retrospective analysis is limited by inherent challenges, including the difficulty of collecting data from 51 registries and adjusting for confounding factors. We realize that our findings might not be truly representative of the whole country because not all the states were able to track their designation rates; however, the statistical power calculated for all the analyses was still above 0.8 (a 4 0.05), and as more states were able to successfully track their donor designation rates over the years, we were able to revalidate the same statistically significant associations (Table 2). We acknowledge the additional weaknesses inherent in our study; the data were collected through a survey and could not be independently verified, and the data lack granularity that might identify confounding factors such as gender and age. The states that designated their DMV clerks to verbally question applicants may also have been more proactive in ways that we were not able to account for or have socioeconomic, demographic, or psychographic population characteristics that influence donor designation decisions. We believe that the donor designation rates were particularly difficult to collect because they required additional communication between the designated representatives for each state and the District of Columbia and the DMV. We postulate that improving the mechanism of communication would improve the completeness of the available data. Conclusions States have been successful in increasing the number of designated organ donors. To refine and strengthen the strategies used by states to register designated donors, we believe that outcomes data should be concurrently collected in a centralized database. In addition, states should have an infrastructure in place to facilitate communication between the DMV and their outcomes data collection. The data that have been collected suggest strong associations between higher donor designation rates and verbally questioning applicants whether they wish to be a donor and not asking for a monetary donation. Acknowledgments We thank Nariman Nezami, MD, from the Drug Applied Research Center of Tabriz University of Medical Sciences, Iran, for his contribution to the statistical analysis. REFERENCES 1. Matesanz R, Marazuela R, Dominguez-Gil B, et al. The 40 donors per million population plan: an action plan for improvement of organ donation and transplantation in Spain. Transplant Proc 2009;41:3453-6. 2. United Network for Organ Sharing Web site. Available at: www.unos.org. Accessed February 11, 2011. 3. Brown CV, Foulkrod KH, Dworaczyk S, et al. Barriers to obtaining family consent for potential organ donors. J Trauma 2010;68:447-51. 4. DonateLifeAmerica. National Donor Designation Report Card, http://tds.dcids.org/files/2012/01/DLA-Report-Card-2010_ FINAL.pdf, April 2010. 5. Trompeta JA, Chen JL, Cooper BA, et al. Development of the Organ Donation and Transplantation Knowledge Survey for use in Asian American adolescents. Transplant Proc 2010;42:1427-31. 6. Salim A, Schulman D, Ley EJ, et al. Contributing factors for the willingness to donate organs in the Hispanic American population. Arch Surg 2010;145:684-9. 7. Sheehy E, Conrad SL, Brigham LE, et al. Estimating the number of potential organ donors in the United States. N Engl J Med 2003;349:667-74. 8. SiminoffLA, Gordon N, Hewlett J, Arnold RM. Factors influencing families' consent for donation of solid organs for transplantation. JAMA 2001;286:71-7. 9. Callender CO, Miles PV. Minority organ donation: the power of an educated community. J Am Coll Surg 2010;210:708-715, 715-7. 10. Bryce CL, SiminoffLA, Ubel PA, et al. Do incentives matter Providing benefits to families of organ donors. Am J Transplant 2005;5:2999-3008. 11. Strategies for cadaveric organ procurement.Mandated choice and presumed consent. Council on Ethical and Judicial Affairs, American Medical Association. JAMA 1994;272:809-12. 12. Volk ML, Warren GJ, Anspach RR, et al. Attitudes of the American public toward organ donation after uncontrolled (sudden) cardiac death. Am J Transplant 2010;10:675-80. 13. SiminoffLA, Lawrence RH. Knowing patients' preferences about organ donation: does it make a difference J Trauma 2002; 53:754-60. 14. Christmas AB, Burris GW, Bogart TA, Sing RF. Organ donation: family members NOT honoring patient wishes. J Trauma 2008;65:1095-7. 15. Wolfe RA, Roys EC, Merion RM. Trends in organ donation and transplantation in the United States, 1999-2008. Am J Transplant 2010;10:961-72. 16. Klein AS, Messersmith EE, Ratner LE, et al. Organ donation and utilization in the United States, 1999-2008. Am J Transplant 2010;10:973-86. 17. Lai M. Do we need to change our national organ donation policy Hepatology 2010;51:1479-82. 18. Rithalia A, McDaid C, Suekarran S, et al. Impact of presumed consent for organ donation on donation rates: a systematic review. BMJ 2009;338:a3162. 19. Harrison TR, Morgan SE, Di Corcia MJ. Effects of information, education, and communication training about organ donation for gatekeepers: clerks at the Department of Motor Vehicles and organ donor registries. Prog Transplant 2008;18:301-9. 20. Lawlor M, Kerridge I. Registering wishes about organ and tissue donation: personal discussion during licence renewal may be superior to online registration. Intern Med J 2009;39:835-7. BABAK HAJHOSSEINI, M.D.,* BRYAN STEWART,[dagger] JANE C. TAN, M.D., PH.D.,[double dagger] STEPHAN BUSQUE, M.D.,§ MARC L. MELCHER, M.D., PH.D.§ From the *Department of Surgery, David Geffen School of Medicine at UCLA, University of California, Los Angeles, Los Angeles, California; [dagger]Donate Life America, Richmond, VA and Donate Life California Board of Directors, San Diego, CA; and the [double dagger]Department of Medicine and the §Division of Abdominal Transplantation, Stanford University School of Medicine, Stanford, California Address correspondence and reprint requests to Marc L. Melcher, M.D., Ph.D., 750 Welch Road, Suite 200, Palo Alto, CA 94304. E-mail: [email protected]. (c) 2013 Southeastern Surgical Congress |