Project Summaries:
Fiscal Year 2018 Grantees
Grantee: Beth Israel Deaconess Medical Center
Project Title: A Randomized Trial to Increase Donor Registration and VCA Donation Willingness in Veterans
In addition to general organ and tissue donation efforts, the emergence of vascularized composite allograft (VCA) transplantation provides another unique opportunity to engage the veteran population. Many of the VCA transplant candidates and recipients are military veterans who sustained severe combat injuries, particularly ones to the face and extremities, during Operations Enduring Freedom and Iraqi Freedom. Recently, we have established a close collaborative alliance with leaders of agencies focused on veterans affairs throughout the six New England states. The objective of the proposed research is to leverage these relationships to effectively engage veterans in organ donation awareness and to increase donor registrations in this important population. There are 20 million living military veterans in the United States. The veteran population is largely (62%) comprised of those who have the lowest likelihood of registering as organ donors – males over 50 years old. However, the veteran population has not been the focus of organ and tissue donation campaigns and there are no published studies evaluating strategies to increase donor registration in veterans.
The trial will compare two targeted, veteran specific donation video messaging interventions – one with and one without VCA donation messaging – versus a general donation video messaging intervention that is not veteran specific versus a control group without donation messaging. The primary outcome is donor registration within one month of receiving the intervention. Secondary outcomes include changes in general and VCA donation knowledge, attitudes, intentions, and surrogate authorization commitment.
Grantee: Erie County Medical Center
Project Title: Living Donation and Kidney Transplantation Information Made Easy (Kidneytime) with Animated Video Education
The objectives of this project are to develop a comprehensive, understandable, literacy-appropriate video module that improves informed decision-making amongst kidney failure patients and their close relations. Results will provide critical preliminary data for further studies aiming to test broader effects of the video intervention on racial/ethnic minorities and patients at earlier stages of chronic kidney disease. This web-based peer-informed intervention has the potential for widespread dissemination to patients at all levels of the kidney disease process, including the potential to address health-literacy challenges faced in accessing health information.
Living-donor kidney transplantation is the most successful form of renal replacement for patients with kidney failure. Despite increasing availability of information about living kidney transplantation and donation, there remains a vast chasm between what professionals know and what patients understand. Developing innovative ways to inform and empower kidney failure patients and their close relations (relatives and friends) can equip them with essential knowledge and self-efficacy to fully understand the benefits and risks of living kidney transplantation and donation so that they make informed decisions. The project will utilize established design, logic, and communication principles within a participatory process wherein the target audience is involved in the development and design of the video intervention. Prototypes will be refined on an iterative basis and then the effects of the video education intervention will be tested using a pre-post quasi-experimental trial. It is hypothesized that after exposure to the video education intervention, kidney failure patients will report increases in knowledge and self-efficacy related to the risks and benefits of living kidney transplantation and donation and close relations will increasingly seek information by presentation to the transplant center for additional information regarding donation.
Grantee: University of California, Los Angeles
Project Title: Ensuring Informed Decision-Making for Paired Kidney Donation: A National Kidney Registry Education Collaborative
This project proposes to build a National Kidney Registry (NKR), an NKR Education Collaborative, in partnership with NKR leadership, the Terasaki Research Institute, and transplant centers nationally to improve the education available at 80 centers for patient-donor pairs interested in paired kidney donation (PKD). This Collaborative will assess the standard of care of PKD education, determine opportunities for improvement, design a new print and video storytelling PKD curriculum, and test its ability to improve knowledge through a group randomized controlled trial (GRCT). The ultimate goal of this project is to develop and test the effectiveness of a PKD Education Curriculum, standardized its use online and within 80 NKR-affiliated transplant centers, and assisted more donor-recipient pairs in making informed PKD decisions.
Since the early 2000s, kidney patients who are healthy and have one or more potential living
kidney donors with immunological barriers preventing them from matching can enroll into computerized national paired kidney donation (PKD) programs and receive living donor kidney
transplants (LDKTs) from other, unrelated donors. Through PKD programs, a prospective recipient and his/her incompatible living donor are matched with other recipient-donor pairs to
create chains of PKD transplants for multiple patients who would have otherwise had to face dialysis and or uncertainty for deceased donor kidney transplants. PKD chains are coordinated
across transplant centers, with living donor kidneys often being shipped.
Fiscal Year 2017 Grantees
Grantee: Beth Israel Deaconess Medical Center
Project Title: Increasing VCA Donation Knowledge, Attitudes, Willingness, and Designations in Veterans
The objective of this project is to use a mixed- methods approach to develop and evaluate (randomized controlled trial, RCT) targeted video interventions designed to increase VCA donation knowledge, attitudes, intentions, and designations in a diverse veterans population, as well as to enhance their commitment to authorize VCA donation for a deceased relative or significant other.
Vascularized composite allograft (VCA) transplantation of the face, extremities, and genitourinary organs (e.g., uterus, penis) returns identity and function to individuals affected by traumatic injury, congenital deformity, or disfigurement. While VCA transplantation is due to the donation of specified body parts after death by surrogate authorization, there currently is no mechanism for individuals to register as deceased VCA donors in the United States. It is widely accepted that the general public has very favorable attitudes toward traditional organ and tissue donation; however, their VCA donation attitudes and willingness are unknown. Considering that VCA donation is not presently part of the standard organ and tissue donor registration process, the donation of face, limb, uterus, and other vascular composites has not been integrated into public education campaigns. As VCA policies and practices continue to evolve, efforts are needed to inform the public about its nature and scope so individuals can make informed decisions about VCA donation. Many of the patients who have benefited from and who currently are in need of VCA transplantation are military veterans with severe combat injuries during Operations Enduring Freedom and Iraqi Freedom. Consequently, the Department of Defense has been a major partner in the development, evaluation and funding of science designed to advance VCA technology and practice for the benefit of injured veterans. Surprisingly, there are no published studies that have examined the organ donation attitudes and willingness of veterans in the United States. Nevertheless, the particularly important clinical benefit of VCA donation and transplantation for combat veterans provides a unique opportunity to focus VCA education efforts on the veteran community.
Grantee: Johns Hopkins School of Medicine
Project Title: Evaluating the Implementation of the Live Donor Champion
The objectives of this project are to pilot-test and optimize strategies for the implementation of the Live Donor Champion (LDC) program for patients with ESRD in the clinical transplant center setting. The hypothesis is that a multifaceted strategy would enable implementation of LDC in a way that meets the needs and demands of professionals and patients, without disrupting daily clinical operations at a U.S. transplant center.
Over 90,000 individuals in the United States await kidney transplantation. Only about 12,000 will receive a deceased donor transplant each year, and recent efforts to increase deceased donation have been largely unsuccessful. As a result, most candidates on the waiting list have a higher chance of dying than of being offered a deceased donor kidney. Live donor kidney transplantation (LDKT) eliminates the wait and offers superior survival, but accounts for fewer than 6,000 additional transplants per year, despite a huge potential pool of millions of adults living in the US. Worse, LDKT rates are lowest among Hispanic and African American candidates who account for over 30% of the waitlist. Across all ethnicities/races, known barriers to identifying a live donor include lack of education regarding LDKT, and reluctance among the transplant candidate to discuss one's illness. The Live Donor Champion program was developed addresses these barriers. The evidence-based transplant center intervention is a 6-month training program that combines education, advocacy, and instrumental support by pairing candidates with a live donor champion (LDC): a friend, family member, or community member trained to spread awareness of End Stage Renal Disease (ESRD), LDKT, and the candidate's story throughout their social network.
Grantee: The University of Chicago
Project Title: Informing American Muslims about Living Donation [I AM a LD]
Despite facing an elevated risk for kidney failure and thereby a need for organ transplant due to
high rates of diabetes and hypertension, a large percentage of Muslim Americans remain ambivalent towards, or hold negative attitudes about, organ donation. Studies suggest that this
hesitancy is rooted in a lack of biomedical and/or religious information about the significance of
organ donation. This project directly attends to these information gaps by delivering tailored
educational workshops in several Washington DC Metro area mosques. Partnership with local mosque leaders and religious authorities, and collaborate with a regional organ procurement organization to build upon their current Muslim community outreach to design and implement a randomized, controlled, cross-over trial of educational workshops. Workshops will be held at 4 area mosques matched by the predominant ethnic/racial composition of attendees.
Using the theory of planned behavior as a conceptual model and baseline in concert with post-workshop surveys, the effectiveness of these workshops will be assessed in several knowledge-based areas regarding living organ donation: increasing knowledge about benefits and risks (behavioral beliefs and attitude), understanding of religious arguments for and against (normative beliefs and subjective norm), and procedural knowledge about the process itself (control beliefs and perceived control). By working with Muslim Americans and mosques, the project engages with an important yet socially marginalized and hard-to-reach population. Its impact broadens by attending to the often-missing element of religion and providing a methodological model for faith-based health interventions focused on helping individuals making informed health choices.
Fiscal Year 2016 Grantees
Grantee: Beth Israel Deaconess Medical Center
Project Title: Kidney Paired Donation: A Randomized Trial to Increase Knowledge and Informed Decision-Making
Live donor kidney transplantation (LDKT) offers the most optimal survival and quality of life benefit for those with late-stage chronic kidney disease. In the United States, approximately 5,000 patients each year successfully find a compatible healthy living kidney donor (LKD) and undergo LDKT. However, one-third of potential LKDs who volunteer to undergo evaluation on behalf of an intended recipient are blood type or cross-match incompatibility. Kidney paired donation (KPD) was developed as a strategy to provide these incompatible donor-recipient pairs with an innovative opportunity for LDKT, yet its uptake by potential donors and their intended LDKT recipients is not optimal. Fewer than half of eligible incompatible pairs agree to register in a KPD program when presented with this option. Guided by our own conceptual model, the objective of this application is to evaluate the effectiveness of a targeted intervention designed to increase knowledge of KPD risks and benefits, improve KPD self-efficacy, and reduce KPD concerns among incompatible potential LKDs and their intended recipients. Specifically, in a randomized controlled trial (RCT), 360 incompatible LKDs (n=180) and intended recipients (n=180) at two transplant centers will be randomly assigned to one of two KPD education conditions: (1) Usual Care (UC) and (2) UC plus transplant educator-guided (TEG) KPD education. Changes in KPD knowledge, self-efficacy, concerns, and informed decision-making is assessed by questionnaire administration at baseline (pre-randomization) and post intervention (2 weeks). Additionally, while not the target of intervention, we will gather follow-up data on KPD decision-making, participation, and reasons for non-participation at 3 months post intervention. The proposed research is innovative because it is the first to examine strategies for increasing knowledge of KPD risks and benefits, a critically important yet significant underutilized innovation in the field of kidney transplantation.
Grantee: Claremont Graduate University
Project Title: Vested interest, pride, and the MVD: Increasing registration rates of adults 50+
The goal of the current study, implemented in an area with a high percentage of Hispanics, is to assess whether a pan-cultural intervention focused on promoting the benefits experienced by donor families can increase donor registration rates among adults fifty years of age and older. We will then attempt to amplify the success of the intervention by creating bi-lingual promotional materials that induce feelings of familial pride (i.e., naches). Study 1 will take place in 18 different MVD’s and, as noted, is guided by a new development in vested interest theory. Vested interest theory (Crano, 1997), which has often been applied to organ donation (e.g.,
Anker et al., 2010; Siegel et al., 2008), states that people’s attitudes are most likely to lead to the associated behavior (e.g., donor registration) if the person believes they have a stake in the outcome (i.e., direct self-benefit). However, there has been a recent development in the framework indicating that if the benefits of the actor’s behaviors are received by close others, focusing on such benefits will increase attitude behavior consistency (Johnson, Siegel, & Crano, 2014). Even though prior studies have examined organ donor behavior through the lens of vested interest (Quick et al., 2015), and the topic of benefits experienced by donor families has been a feature of multi-component efforts (Rodriguez et al., 2015), to our knowledge the benefits experienced by the donor’s family have not been the sole focus of a campaign. The second study, taking place in 24 MVDs seeks to maximize the utility of the familial stake approach with positive emotion. Prior studies indicate that positive emotion inductions can increase organ donor registration intentions (Siegel, Navarro, & Thomson, 2015) and behavior (Blazek & Siegel, 2016). Study 2 will focus on the discrete positive emotion of naches. We propose that by increasing feelings of pride in peoples’ families, the familial vested interest appeal will be particularly moving. The findings will demonstrate the utility of focusing on the benefits experienced by donor families and how eliciting specific positive emotions can maximize this approach. The materials used in the proposed intervention are easily replicable and the approach can be easily replicated in MVDs nationwide.
Grantee: University of California, Los Angeles
Project Title: Working Within an Integrated Learning Healthcare System to Improve Living Kidney Donation Knowledge across the CKD Continuum for all Racial Groups
While consensus exists on the need to educate patients earlier about transplant, delays in education persist, leaving patients insufficient time to make optimal renal replacement therapy (RRT) decisions. This study was a formal partnership between UCLA and Kaiser Permanente Southern California (KPSC). KPSC’s fully integrated care management program, diverse membership, and ability to track a large patient population offered a rare opportunity to study how knowledgeable chronic kidney disease (CKD) Stage 3-5 patients are about living donor kidney transplant (LDKT), assess disparities in knowledge across many races, ethnicities, and languages, and conduct a large-scale randomized control trial (RCT) to assess the effectiveness of Explore Transplant at Home (ET@Home) against standard of care (SOC) KPSC education. Prior to the RCT, CKD patients could correctly answer only 58% of CKD symptoms questions, and 20% of transplant knowledge questions. Most patients had taken few steps to learn more (median: 0 of 5 steps), make informed decisions about RRT options (median: 2 of 6 steps), and pursue transplant (median: 0 of 6 steps). Earlier CKD stage and Spanish-speaking patients had poorer CKD symptom and transplant knowledge and took fewer action steps overall. Compared to SOC, patients receiving ET were twice more likely to make informed decisions about pursuing LDKT than those receiving SOC (1.99 [1.35, 2.92] p<.001). Increases in CKD symptom knowledge and transplant knowledge were also observed for the ET group at 6 months (p < 0.001). There was heterogeneity of treatment effects for informed decision-making by CKD Stage (p = 0.067) and for deceased donor kidney transplantation (DDKT) self-efficacy by primary language spoken (p = 0.059). Additional CKD and ESRD quality improvement initiatives are underway between KPSC and Transplant and Research Education Center (TREC) as a result of these grant findings.
Grantee: University of Illinois at Urbana-Champaign
Project Title: A Randomized Controlled Experiment to Evaluate a Multi-Faceted Driver Education
Curriculum
The proposed “Save Lives” project seeks to apply and expand upon successful promotional strategies by designing three driver education challenge campaign interventions aimed at increasing (a) teens awareness of organ donation, (b) family discussion about organ donation, and (c) the numbered of teens registered as organ donors (Category 2). Driver education programs Cleveland, Ohio, (n = 8) and Detroit, Michigan, (n = 8) will be selected to participate in the program. The schools will be randomly assigned to receive a (a) traditional (n = 4), (b) digital (n = 4), (c) combined traditional and digital organ donation intervention (n = 4), or (d) assigned as a control group, which will receive the current organ, tissue, and eye donation program being conducted within the schools (n = 4). “Save Lives” strives to inoculate teens against media misrepresentations about organ donation by equipping them with the facts. In turn, teens will build up resistance to inaccurate portrayals and will be able to successfully refute the myths often surfacing as reasons for not registering as an organ donor. By varying the presence of the traditional (e.g., pamphlets, posters, video, workbook) and digital (e.g., digital contest, Facebook, Twitter, Instagram, Snapchat, microsite) interventions, the researchers will be able to test the effectiveness of each intervention individually, as well as in conjunction with each other through the combined intervention arm. Moreover, by utilizing control schools we will be able to determine if increases in knowledge, family discussions, and registrations are due to the intervention or an environmental confound or secular trend. Perhaps more importantly, the proposed driver education intervention represents a verifiable, replicable, transferable, and feasible campaign that will reach a significant number of African-Americans as approximately
30.3% of Cuyahoga County (Cleveland) and 39.3% of Wayne County (Detroit) residents are African-American.
Grantee: University of Pittsburgh
Project Title: Patients Save Lives
The “Patients Save Lives” (PSL) project integrated donor designation forms into the electronic medical record (EMR) system to generate pre-populated, age tailored donor designation forms in real time. The PSL project tested whether adults age 50 and older are more likely to register as organ and tissue donors when given a donor designation form addressing common age-related myths about organ and tissue donation. This goal was accomplished through: (a) integration of the PSL form into the EMR; (b) web-based training for PCP office staff; and (c) tailored PSL forms based on patient age. The approach involved developing a ‘trigger’ that was added to the EMR check-in process that generated a single page form with age-appropriate messaging, pre-populated with the patients’ name, date of birth, and address. Three different age-appropriate messages were compared to a generic form (control condition). A ‘removed treatment’ design was used whereby each clinic not only served as its own control, but each intervention period alternated with a control period. Patients received either a generic form or one of six age tailored forms. The versions tested combinations of messages and images intended to provide both emotional appeal and factual counterargument. When examining the characteristics of the message, we found that the age-tailored messages were much more effective than the generic message. In addition, the age-tailored message was more effective when paired with an image of an older adult.
Grantee: Temple University
Project Title: Promotoras de Donación: Leveraging Lay Educators to Increase Donor Registration in Older Hispanic Women
Despite consistently positive attitudes toward organ donation, increasing the number of registered organ donors in the US continues to challenge the professional and research communities. Improving rates of donor designation among ethnic minorities is of particular importance given the need to match donated organs to recipients on blood type and human leukocyte antigens – the best matches are found when the donor and recipient are of the same ethnic background. In Hispanic communities, lay health educators (i.e., Promotoras) are trained to promote behaviors that empower and enable constituents to prevent disease, and increase control over and improve their health. In partnership with leadership of four Promotoras organizations in geographically diverse areas of the U.S. (PA, IL, TX) representing the largest subgroups of the Hispanic population, this pilot study proposes to leverage the preexisting network of lay health educators to advocate for organ donation and promote donor registration (first person consent) among female Hispanics over the age of 50. Specifically, this study will collect the formative data needed to design an educational and behavioral communication eLearning module for Promotoras and test the impact of the training on Promotoras’ knowledge of organ donation, confidence discussing and promoting donor registration, and efficacy increasing rates of donor registration among mature and older Hispanic women. Focus group interviews with Hispanic women and Promotoras will identify the information needs and concerns about organ donation registration of these two groups; interviews with lay educators will also gauge interactivity preferences as well as content and design issues for the resulting web-based training (Aim 1). These data will be used to develop an eLearning module to educate Promotoras about organ donation and train them to discuss donation and promote donor registration (Aim 2). A brief quantitative survey will assess the impact of the module on knowledge of organ donation and confidence (communication self-efficacy) discussing donation and promoting donor designation. We will evaluate Promotoras’ efficacy promoting organ donation by assessing the number of Hispanic women age 50 and over who register as posthumous organ donors as a proportion of all women attending small group sessions led by trained Promotoras (Aim 3). If effective, the eLearning module could easily be disseminated nationally to train Promotoras to discuss and promote organ donation. Ultimately, this ‘train-the-trainer’ study has the potential to increase rates of donor registration among Hispanic communities in the U.S. and help to reduce disparities in access to transplantation for this population.
Fiscal Year 2014 Grantees
Grantee: Beth Israel Deaconess Medical Center
Project Title: Increasing donor designation rates in teenagers: Effectiveness of a driver's education intervention
Adolescents enrolled in driver education classes are an important target of organ donation education given the temporal relationship to their first opportunity to join the organ donor registry. We evaluated the effectiveness of video messaging on organ donor designation at time of obtaining first driver’s license and the differential impact of three different messaging types. Overall, donor designation rates were significantly higher for those exposed to video messaging than for a regionally-matched historical comparison group (60% vs. 50%, p<0.001). Testimonial (64%) and blended (informational + testimonial) messaging (65%) yielded significantly higher donor designation rates compared to informational messaging (51%) (p=0.013). There was no significant video messaging type x time (pre-intervention, post-intervention, 1 week follow-up) interaction effect for donation engagement, attitudes, and beliefs, or donor designation likelihood; however, there was a significant interaction effect for donation knowledge (p =0.03), with blended and information messaging showing more gains in knowledge from pre- to post-intervention, compared to testimonial messaging. We conclude that testimonial messaging is essential to produce a verifiable and demonstrable impact on donor designation rates in adolescents and that driver education classes are an efficient venue for disseminating organ donation messaging to youths.
Grantee: Case Western Reserve University
Project Title: Combining, expanding, and evaluating multiple evidence-based organ donation interventions
Adolescents are an important group for organ donation efforts as they have not yet applied for a driver’s license and represent future organ donors. Yet many organ donation interventions have not targeted adolescents. This study evaluated the effects of donation videos and organ donation discussion role play and training on consent for donation among high school students and their parents. 438 inner-city high school students from northeastern Ohio participated in 1-day health summits hosted at regional colleges and universities to educate them about organ donation and teach them ways to discuss donation with their parents. 29% of students who watch the videos and participated in donation discussion role play and training consented to donation compared to 18% of students who did not watch the videos or participate in donation discussion role play (p = 0.37). 75% of students who were exposed to both interventions discussed donation with their parents compared to 40% in the control group (p = 0.49). Teen summits may be a viable means to introduce the topic of organ donation and transplantation to high school students and to encourage discussion between students and their parents.
Grantee: Claremont Graduate University
Project Title: Maximizing donor registrations among Hispanics: A positive psychology approach
The current project took a positive psychological approach toward increasing donor registration rates among Spanish-Dominant Hispanics. Two Mexican consulates served as the central intervention locations. The general methodological approach involved randomly assigning participants to receive a positive emotion induction (e.g., elevation, gratitude), or assigning them to a control or comparison condition (e.g., a guilt induction). Altogether, over a dozen different studies were conducted. Although online pilot studies consistently indicated that donor registration outcomes can be positively influenced through the induction of elevation, these results were not replicated within the Mexican Consulates. The lack of influence of the elevation conditions was surprising, particularly given pilot study results, but this could be because the influence of elevation on favorable activation was overwhelmed by the simultaneous presence of all four components of the IIFF Model (immediate and complete registration mechanism, information, favorable activation, and focus engagement). Specifically, registration rates among the Spanish-Dominant Hispanic respondents hovered around the 25-30% range. Embedded in a couple of the studies was an experimental assessment comparing whether participants were more likely to register when given the opportunity to do so on an iPad or through a pen and paper format. Overall, participants were more likely to register when given the opportunity to do so on an iPad. Neither acculturation nor comfort with technology influenced the pattern of results. A final set of studies assessed an attribution-based approach toward increasing donor registration outcomes. Although an online study indicated some success, the field study was inconclusive.
Grantee: Emory University
Project Title: Web-based donation education for African Americans
Project WebACTS (About Choices in Transplantation and Sharing) is a culturally sensitive individual-level education intervention that is designed to increase public commitment to organ and tissue donation among African American adults. It is based on a previously successful intervention (Project ACTS) and draws from the Two-Dimensional Model of Cultural Sensitivity and the IIFF Model of Donor Registration Behavior. This randomized trial (N=287) evaluated the efficacy of Project WebACTS to change donation-related knowledge, attitudes and beliefs towards organ and tissue donation, and intentions to join the state donor registry. A control website consisted of the existing Donate Life Georgia website. Data were collected from study participants before and after their exposure to the study or control website. Participants were recruited into the study through a mix of online recruiters and targeted advertisements via Twitter and Facebook. Results indicate no differences between study conditions over time in terms of any of the psychosocial outcomes. However, more research is needed to evaluate the efficacy of this intervention under conditions of more robust intervention uptake and to determine whether it is effective at actually changing registration-related behavior. What is learned about the efficacy of this intervention could be used to inform the development of interventions of similar behaviors characterized by high ambivalence and low stake in a context that is shroud with participant concerns about inequalities in the healthcare system.
Grantee: National Kidney Foundation of Michigan
Project Title: Integrating rgan donation messages into evidence-based programs
This project evaluated the effectiveness of integrating an organ donation education module into evidence-based health programs. The National Kidney Allocation System was updated in 2014, expanding the use of kidneys from donors over age 50 years; however, older adults and those with a chronic health condition often have misconceptions about their ability to donate. The study used a cluster-randomized design with baseline/follow-up attitude surveys. Health program workshops were pair-matched and randomized to an intervention group (organ donation) or control group (health topic). The intervention group received an hour-long educational session led by a peer with a personal connection to organ donation. 1,799 participants from 192 health workshops completed baseline surveys. 665 participants (380 Intervention, 285 Control) were identified as verified donors at completion of the study; 98 participants (86 intervention, 12 control) enrolled in the Donor Registry using a coded brochure. The odds of enrollment via brochure for participants in the intervention group was 7.96 times the odds of those in the control group. Furthermore, significant improvements in organ donation attitudes were observed in the intervention group compared to control. Health workshops provided a safe space for discussion about organ donation. Using the Replication Toolkit, educational sessions on organ donation can be added to any health workshop. This program was led by a consortium of the National Kidney Foundation of Michigan, Gift of Life Michigan, and the University of Michigan School of Public Health.
Grantee: University of Hawaii Systems
Project Title: Using an interactive website, social media, and gamification to engage/reframe deceased organ donation for Asian/Pacific Islander college students
Asian, Native Hawaiian, and Pacific Islanders (ANHPI) undergraduates have low designated organ donor (DOD) adoption. The iDecide Hawaii Project developed an online intervention that provided DOD resources (website) and used gamification to engage and educate undergraduates in DOD choice on license. Intervention was implemented at three Hawaii universities using a multiple baseline, randomized delayed treatment design to increase DOD rates through social media contests including peer competitions. Overall, 3,742 undergraduates entered 122 contests using nine different themes with 237 winners with most popular contests being pledge drives (n=1,992) for student organizations and Instagram pictures/caption contests on specific themes (n=353). Surveys yielded both a cross- a longitudinal dataset (n=478) consisting of students who completed at least one baseline and one post-test survey. A majority (69%) of baseline surveys included: 31.5% Asian, 16.7% Native Hawaiian/Pacific Islander, 9.2% mixed Asian/White, and 11.6% other minorities. There was an overall significant increase from 50.8% to 52.4%, (p = 0.02). For those not a donor at baseline but became one, percentages were 9.8% for whites, 9.7% for Asians, 12.1% for NHPIs, and 5.3% for white-Asian mix. There were variations within Asians: 5.3% for Chinese, 5.8% for Filipinos, 28.6% for Japanese, 33.3% for Korean, and 40.0% for Other Asians. Those likely to adopt being a DOD post-intervention included females (11.6%) as compared to males (3.8%) (p=0.09); older (≥21 years) respondents (12.1%) as compared to younger (<21) respondents (5.9%) (p=0.12); and students with no religion (20.3%) as compared to Catholic (3.2%), Protestant (8.2%), and other specified religion (6.3%)
Grantee: New York Alliance for Donation
Project Title: Increasing organ donation in New York State through voter registration
This project sought to increase the number and proportion of individuals who join the New York State (NYS) Donate Life Registry by pairing the voter registration (VR) and donor designation (DD) processes. NYS organ and tissue recovery organizations collaborated with local League of Women Voters of New York (LWVNY) offices to conduct and report on voter registration drives offering the opportunity to designate as a donor. Seven hundred fifty-four (754) VR drives were undertaken across NYS. The LWVNY was present at 603 (80%) of the drives and OPO/ET representatives were present at 230 drives (31%). During this time period, 24,897 VR forms were completed and submitted and among them, 6,651 donor designations (27%) were completed. The yield or rate increased to 34% when OPO/ET representatives were present at drives. An additional 9,419 VR forms were distributed but not completed at drives so it is anticipated many more forms were later submitted due to VR drive efforts. The ability to replicate this project requires states to integrate DD into their VR process. While this enrollment portal was accomplished legislatively in NYS, it is recommended that other states interested in incorporating a DD opportunity into their VR process seek out an administrative solution by working with their state’s Board of Elections. It is also recommended that states with electronic means to register as voters consider proactively incorporating a DD question as part of the electronic voter registration process, and transmit DD data to their registry databases via secure electronic file transfer methods.
Fiscal Year 2013 Grantees
Grantee: The Research Foundation for the State University of New York on behalf of University at Buffalo
Project Title: A Positive Deviance Approach to Increasing Familial Consent Rates
This project addresses the documented negative association between Organ Procurement Coordinators’ (OPCs) familial consent rates and racial/ethnic diversity of donation service area. The Positive Deviance (PD) approach provides a theoretical framework for the project. PD indicates that within any community there exist individuals who enact specific behaviors that allow them to thrive despite surrounding circumstances. The project will identify novel communication behaviors employed by OPCs who maintain high consent rates despite being located in racially/ethnically diverse areas (i.e., PD behaviors) and will disseminate such strategies among participating Organ Procurement Organizations (OPOs) toward the goal of improving familial communication and subsequent consent rates. The PD approach encourages OPCs to be active participants in each stage of intervention development, implementation, and evaluation. During the first year of the project, OPCs at 11 participating OPOs will complete interviews designed to identify PD behaviors. A proportion of these OPCs will also participate in a collaborative workshop designed to clarify the meaning of identified PD behaviors and will assist in creating an educational video for dissemination across participating OPOs that discusses and demonstrates such behaviors. During years two and three of the project, participating OPCs will complete educational sessions and refresher courses that employ a variety of active learning methods to increase knowledge of PD behaviors. Project success will be tracked by measuring OPCs’ quarterly consent rates and by examining the association between OPCs’ self-reported use of PD behaviors with familial consent and case characteristics.
Grantee: University of Pittsburgh
Project Title: The Effect Of An eLearning Approach To Hospital Development On Organ Donation Authorization Rates
This study will develop and test a new approach to educating hospital staff involved in the organ donation process. In many hospitals, OPO staff is not able to reach all staff in person and must rely in part on the hospital’s orientation process to address organ donation. This is typically done as part of a longer presentation, with only a few minutes dedicated to organ donation. The high turnover rate in the nursing profession, especially in the stressful environment of the critical care unit, leads to inconsistent and potentially inadequate knowledge and understanding of the organ donation process. Building on our CME accredited online course for primary care providers, we will develop a new version for use in hospitals. The course will be designed to be relevant for all staff that is involved with the organ donation and recovery process – physicians, nurses, social workers, and chaplains. eLearning programs are highly valued by organizations and individual participants due to the low cost, consistency, and flexibility. We hypothesize that in hospitals where all eligible staff has had consistent, up to date training, the environment will be more positively disposed toward donation, and there will be fewer process breakdowns that lead to loss of potential donors, leading to a higher number of donors and higher authorization rate.
Grantee: Temple University
Project Title: Communicating Effectively about Donation: An Effectiveness and Implementation Study
This study builds on prior work that developed and tested the Communicating Effectively about Donation (CEaD) training program, a communication skills training program that successfully increased the consent rates of OPO staff who request deceased organ donation at 8 OPOs located around the United States. The purpose of this project is to conduct an effectiveness and implementation study based on the principles of the RE-AIM model (Reach, Efficacy, Adoption, Implementation, Maintenance). One of the unique aspects of the approach is the intent to create capacity in OPOs for assessment and training for sustained and constant improvement once this project is completed. The CEaD does not necessarily supplant local or intensive on-site programs, rather, it provides OPOs with the capacity to allow busy OPO staff to learn and review evidence-based communication skills on a regular and consistent basis and in accordance with their work schedules. The aims of the study are to: (1) Re-package the CEaD as a wholly self-contained communication skills training tool that provides basic and continuous training for any OPO staff to use; (2) Test the uptake and acceptability of the CEaD2 outside the confines of a randomized clinical trial by implementing a social marketing campaign; (3) Test the effectiveness of the CEaD2 training program to improve communication skills and increase authorization to organ donation.
Grantee: University of California, Los Angeles
Project Title: Improving Low-Income ESRD Patients’ Transplant Knowledge: A Case Management Trial
This project will test the effectiveness of disseminating a living donation kidney transplant (LDKT) education program called Explore Transplant (ET) by partnering with a large health insurance organization to deliver video-guided transplant education supported by telephone and mail. The Missouri Kidney Program (MoKP) is a state-wide organization who subsidizes the costs of dialysis medication for low-income ESRD patients, thus they operate as an insurance company. With 900 MoKP dialysis patients, we will conduct an eight-month, group randomized controlled trial (GRCT) where 600 patients will be randomized to receive: (1) no additional transplant education; (2) a video-guided, four-part ET program (Patient-guided education); or (3) a video-guided ET program with discussion facilitated by a case manager (Case-Manager guided). The grant aims are to understand the transplant educational needs and barriers to learning faced by low-income Black and White ESRD patients and improve LDKT knowledge. At the conclusion of this study, we will have assessed how different educational delivery strategies common to health insurance companies affect ESRD patients’ informed LDKT decision-making and developed a set of recommendations for ideal transplant education dissemination nationally by health insurance programs.
Fiscal Year 2012 Grantees
Grantee: Hennepin County Medical Center
Project Title: A Circle of Learning for American Indians: Living Kidney Donation Education
The purpose of this proposal is to create and evaluate a new culturally-targeted living kidney donation (LKD) educational intervention for American Indians with Stage III or greater chronic kidney disease who may become eligible for preemptive referral for transplant. The intervention will be conducted in the places where American Indians in Minnesota receive community based health services. "A Circle of Learning" is a theory-based intervention that integrates LKD education and education on deceased donation with the population's oral tradition of story-telling. It will be delivered by tribal outreach staff. This pilot study is a two-group randomized trial (N = 200) that employs a community-based participatory research approach. The primary outcome of LKD knowledge is measured at baseline and after intervention exposure using the Living Kidney Donation and Transplantation Knowledge Scale developed by Dr. James Rodriguez (Beth Israel Deaconess Medical Center, Harvard Medical School). The consortium includes Hennepin County Medical Center, South Dakota State University, and LifeSource, the Upper Midwest Organ Procurement Organization.
Grantee: Virginia Commonwealth University
Project Title: Communicating about Choices (COACH) in Transplantation: An Educational Intervention
This pilot study is designed to provide a preliminary test of an educational intervention aimed at improving kidney transplant candidates' knowledge of the opportunities for and process, relative benefits and risks associated with living and deceased donor kidney transplantation. The study will also test the program's efficacy in enhancing candidates' communication about these options with members of their social networks (i.e., friends and family). Utilizing a randomized controlled trial, the project has the following objectives: to identify communication factors associated with kidney transplant candidates' reluctance to discuss transplant options with members of their social networks; to develop a culturally sensitive educational program to improve kidney transplant candidates' understanding of the opportunities for and process, risks and benefits of living and deceased donor transplantation and to enhance candidates' intent to discuss their transplant options with others; to conduct a pilot test of the COACH Program to provide preliminary data on the program's efficacy and generalizability.
Fiscal Year 2011 Grantees
Grantee: University of Pittsburgh
Project Title: Controlled Trial of Academic Detailing and Web Based Education for Primary Care Physicians to Increase Consent for Organ Donation
This will use a 2x2 factorial cluster randomized controlled trial to test the hypothesis that receiving a message about organ donation from a trusted medical provider in a context where it is possible to have questions answered and fears and misgivings addressed will have a direct effect on people’s decision to join the organ and tissue donor registry. The intervention (conducted in three modalities and one control) is for physicians and their office staff to ask all adult patients whether they are organ donors, and, if not, provide a brochure and donor card and offer to answer any questions. The control condition is a conventional poster and brochure placed in the waiting room of participating physician offices.
Grantee: Northwestern University
Project Title: Evaluation of a Culturally Competent Website on Living Kidney Donation for Hispanics
The objective of this study is to increase understanding about living kidney donation (LKD) among Hispanic/Latino patients and public by increasing knowledge and positive attitudes about LKD. The study proposes to: develop, test, and evaluate a culturally sensitive, web-based, multimedia educational resource on LKD in Spanish and English tailored to Hispanics. The proposed study will be conducted in partnership with the National Kidney Foundation of Illinois, who will host the website.
Grantee: Donor Network of Arizona
Project Title: Partnering with Mexican Consulates to increase organ donor registrations
This study seeks to increase donation registration among Spanish Language Dominant Hispanics using a portable DVD player to create focused engagement and favorable activation while people wait at the Mexican Consulate. If successful, the results of this study offer a new context (Consulates) and a new method (portable DVD players with headphones) as a means of providing information and placing potential donors in the most efficacious mind set for increasing donor registration rates. Also tested is a new approach to addressing myths about donation based on the Risk Communication Framework.
Grantee: Case Western Reserve University
Project Title: Patient and Physician Interventions to Increase Organ Donation in Primary Care Settings
This study seeks to increase discussions between physicians and patients about organ donation by: 1) showing a donation video to patients in primary care settings waiting to see their physician and 2) providing academic detailing of primary care physicians about the topic of donation. Evaluation outcomes include increases in willingness to donate, discussions with physicians, and consent to donate.
Grantee: New York Alliance for Donation, Inc.
Project Title: Increasing organ donation in New York through challenge campaigns
This study will form competitive teams with the aim of increasing organ donor registration. Most teams will be located on college campuses in the New York Metropolitan area. The goal of the study is to register 15,000 new donors.
Fiscal Year 2010 Grantees
Grantee: Emory University
Project Title: Living Donation Education for African American ESRD Patients
This is an extension project to modify an existing and effective federally-funded educational intervention. The primary objective is to increase deceased donation and to increase understanding among patients who are waiting for organs of options for and the process, risks, and benefits of living donation.
Grantee: National Kidney Foundation of Michigan
Project Title: Use of Lay Health Advisors to Encourage Dialysis Patients to Give the Gift of Life
This project will rigorously evaluate the efficacy of a novel intervention to engage dialysis center social workers and dialysis patient peer mentors in encouraging patients in Michigan dialysis centers to sign up in the Michigan Organ Donor Registry.
Grantee: St. Vincent Medical Center
Project Title: Home-Based Patient and Family Education: Hispanic Living Kidney Donation
This project will implement and assess the efficacy of a home-based program that directly educates patients, an intervention to educate patients' loved ones, and a combined approach educating patients and families for a comprehensive educational experience about kidney transplantation.
Grantee: Lifeline of Ohio Organ Procurement, Inc.
Project Title: "Can We Talk?" A Dialogue Intervention to Increase Organ Donation Registration Among Older Adults"
This project will conduct a pilot study to implement and evaluate an intervention to increase organ donor registrations among 50–70 year old adults in this OPO's service area who have not already declared their intent to donate, but who are positive toward organ donation (positive potential non-consenting adults). The effectiveness of a dialogue process that involves participants in a participatory discussion about issues related to organ donation and specifically relates to people their age will be compared to a standard practice community education presentation strategy.
Fiscal Year 2009 Grantees
Grantee: National Kidney Foundation of Michigan
Project Title: Take the Pledge: Social Motivation to Join the Michigan Organ Donor Registry
The need for organs is particularly great among African Americans who make up 12.4% of the U.S. population (14.1% Michigan) but 29% of those on the national waiting list (37.4% Michigan). The primary objective of the Take the Pledge project is to rigorously evaluate the efficacy of a novel intervention in alumni (or graduate) chapters of African American sororities and fraternities in Michigan to increase organ and tissue donation, as assessed by registration in the Michigan Organ Donor Registry. The project is using a cluster randomized design where African American alumni sorority and fraternity chapters are assigned to one of two groups -either an intensive intervention regarding organ donation or a delayed intervention group who initially receive a chronic disease prevention program (comparison chapters). The primary outcome will be actual registrations on the Michigan Organ Donor Registry via mail-in card and internet enrollment. The secondary outcome measure will be determination of differences between pre- and post-test surveys about participants' knowledge and attitudes regarding organ donation.
Grantee: Saint Barnabas Medical Center
Project Title: Enhancing Living Donor Kidney Transplant Education: A Randomized Trial of Transplant Center-Based Interventions
The goal of this project is to identify, among a diverse cohort of potential kidney transplant candidates, transplant center-based interventions that will increase understanding of the opportunities for and process, risks, and benefits of living kidney donation. The project team will assess transplant candidates' knowledge of living donor kidney transplant (LDKT), correlates of increased understanding of LDKT, and racial/ethnic differences in the understanding of LDKT. This project will test practical interventions that may efficiently increase transplant candidates' understanding of LDKT. These proposed interventions should be applicable and replicable at the 245 kidney transplant centers in the U.S.
Grantee: Upstate New York Transplant Services
Project Title: Increasing Registry Enrollment via Electronic Medical Record Patient Education
As most people indicate they would like to hear about donation from their physicians and heavy patient loads consume the time of most physicians, this study is using MyChart—an electronic medical records system for physicians to communicate with patients outside of the office—to promote donation. MyChart allows patients to view their medical records by computer, to receive health information and education from their physician, and to communicate with them via email. Intervention subjects (N=350) will receive information via a multifaceted web-based education program including narrated programs, video of physicians discussing the importance of donation and enrollment, recipient and donor family testimonials and printable materials. A control group of equal size will not receive the intervention. Data will be collected through pre-post surveys and telephone interviews to gather qualitative information.
Grantee: University of Illinois at Urbana-Champaign
Project Title: A Comparison of Campaigns Designed to Increase Organ Donation to African American, Caucasian, and Hispanic 18-Year-Olds
The study seeks to identify the most effective message appeal to encourage 18-year-old African American, Caucasian, and Hispanic adults to join the first-person consent donor registry in Illinois. In doing so, the project is conducting a race-stratified random digit dial phone survey (N = 600) to determine current attitudes, non-cognitive beliefs, controllability, efficacy, knowledge, reactance, subjective norms, intentions, and behaviors as they pertain to joining the first-person consent registry. From this information, the team will develop initial ideas for a mailer and tease out which specific appeals and media would attract attention, be comprehensible and relevant, and be void of insensitive material. This will be done through focus groups (N = 12) with 18-year-old African American, Caucasian, and Hispanic residents.
Fiscal Year 2008 Grantees
Grantee: University of Pittsburgh
Project Title: Instructional Design Approach to Training Department of Motor Vehicle Customer Service Representatives
This project is incorporating an instructional design approach to develop a clerk training package. The target audience is West Virginia Division of Motor Vehicles (DMV) Customer Service Representatives. The project is using a randomized design to evaluate the impact of the web-based training on the probability that the driver's license customer agrees to join the registry.
Grantee: Virginia Commonwealth University
Project Title: A Randomized Trial of the ERRA Intervention to Increase Consent to Organ Donation
This study is testing the use of the Communicating Effectively about Donation (CEaD) training program, a component of the Early Referral and Request Approach (ERRA) intervention, to raise consent rates to solid organ donation from the families of deceased patients when requests are made by organ procurement organizations (OPOs). Eight OPOs, located around the United States, and their coordinators who request organ donation, are participating as study sites and participants (n = 80). The proposal has the following specific aims: 1. Test the effectiveness of the CEaD to increase consent rates; 2. Test OPO implementation of the CEaD training under two conditions to ascertain best practices for implementation.
Grantee: Washington University
Project Title: Training Dialysis Providers to Promote Living Donation: A Four-State Explore Transplant Intervention
This intervention is assessing whether training dialysis providers to effectively present Explore Transplant, an education program designed to address dialysis patients' fears and questions about deceased and living donation, with their own patients can significantly increase the rates of living donation in four states. During the one-year intervention, the research team will conduct all-day Explore Transplant provider trainings in all four states, staff a transplant hotline, provide monthly podcasts and transplant newsletters, and offer center visits from transplant coordinators, kidney recipients, and living donors.
Fiscal Year 2007 Grantees
Grantee: Upstate New York Transplant Services, Inc.
Project Title: Increasing Declaration of Intent to Donate Through HMO Patient Education
This project encourages HMO subscribers to declare their donation intention by enrolling in the state's donor registry and notifying their family of their intention to donate. The study will determine which modalities for HMO delivery of donation education are most effective.
Grantee: Upper Midwest Organ Procurement Organization, Inc.
Project Title: Barbershop Conversations: Increasing Organ Donation among African American Men
A culturally specific, community-based education program was developed for African American barbers who serve as trusted messengers for some aspects of health education for their customers. The project will determine whether this grassroots intervention can influence African American men, over age 18, to make the commitment to organ donation.
Grantee: Washington University, St. Louis, MO
Project Title: Educating Missouri Patients about Preemptive Living Donor Transplantation: A Randomized Clinical Trial
This project explores whether improved transplant education for renal patients, not yet on dialysis, could increase the patients' willingness to pursue preemptive living donor transplant (PLDT). Research shows that PLDT, where a living donor transplant is done before the recipient's kidneys fail, offers better graft survival and lower mortality than living donor transplants following dialysis. The study will look at rural and minority patients' access to transplant education and assess racial, social, economic, and other influences on a patients' willingness to participate in the study.
Grantee: Donor Network of Arizona
Project Title: Swap Meets as a Context for Increasing Organ Donation Among Hispanics
Nearly 80 percent of Hispanics in the Southwest support organ donation and 35 percent want to be donors but have not registered their decision. This project offers a novel context, the swap meet, as the site for an educational intervention on organ donation. Hispanics represent 99 percent of the populations at the swap meet sites targeted in the study. A swap meet manual will be prepared.
Grantee: St. Vincent Medical Center, Los Angeles, CA
Project Title: Hispanic Living Donation: Kidney Health Literacy and Education
The purpose of this project is to increase the number of living kidney donor consents among Hispanics in Los Angeles using two interventions: (1) a Kidney Health Literacy Intervention to increase comprehension of living kidney donation, and (2) a Living Donor Educational Intervention to facilitate the initiation of discussion between Hispanics in need of a kidney and a potential living donor.
Fiscal Year 2006 Grantees
Grantee: Johns Hopkins University
Project Title: Culturally Sensitive Behavioral Interventions to Enhance Living Kidney Donation and Living Kidney Transplantation
This project is developing culturally sensitive materials for end-stage renal disease patients and families considering living donation and will test the effectiveness of a culturally sensitive social worker-led intervention to enhance rates of communication, donor evaluations, and transplantation. The social worker will distribute educational materials, facilitate discussion, and use problem-solving techniques to enable families to make decisions about living donation.
Grantee: Lifeline of Ohio Organ Procurement
Project Title: Increasing Older Adult Registration in First Person Consent Ohio Donor Registry
The purpose of this project is to increase registration rates through informational and educational interventions targeted at 50- to 70-year-old rural and urban Ohio residents who are not registered to donate. To address a lack of registry rate increase in this group when compared to the overall population, a unique message brochure is being designed based on identified barriers to donation and evaluated for its effectiveness with this population.
Grantee: New York Center for Liver Transplantation
Project Title: Increasing Liver Donation through Peer-Developed Education
Living liver donor self-reports are informing the development and implementation of an educational process targeting potential recipients and living donors. The intervention addresses knowledge of living liver donation, post-donation quality of life, and ability to communicate relevant information to loved ones. Outcome measures include actual living donor consent rates, post-donation living liver donor health, and knowledge of living donation. For the population of individuals consenting to donate but found to be unsuitable for the intended recipient, intent to donate upon death will be measured.
Grantee: LifeNet
Project Title: Increasing Organ Donation among the 50-Plus Age Demographic: Piloting an Age-Demographic Tailored Message
To counter the misperception that people over age 50 are medically unsuitable to donate, age-tailored marketing style messages, rather than the traditional healthcare message, are being delivered to 50- to 65-year-olds in several geographic clusters. The messages are intended to change perceptions about who can donate thereby increasing organ donation entry into the Virginia Donor Registry. The message and the medium of delivery will be evaluated with behavior change and donor registration rates as outcome measures.
Grantee: South Dakota Lions Eye Bank
Project Title: Sharing the Gift of Life: A Multi-state American Indian Tribal College Intervention to Increase Organ and Tissue Donation
A multi-state, culturally-targeted intervention utilizing the Native-American tradition of storytelling and gift giving among the Plains tribes will be delivered to tribal colleges in the US Great Plains to address the need for kidney transplantation and the corresponding low donation consent rate. The intervention incorporates print, video, and web site materials. Outcome measures include improved readiness to sign up to as an organ donor, the move to action, and family notification.
Grantee: Purdue University
Project Title: The Drive for Life Campaign and Evaluation: The Impact of Just-in-Time Information, Public Education, and DMV Clerk Training on Donor Registrations and Family Notifications
DMV/Circuit Court clerks are being trained to provide simple, accurate information about organ donation and the DMV registry when Kentuckians are obtaining their driver's license. Additional approaches include stocked brochures, mailings with driver's license renewal materials, and outreach and mass media events. This campaign is intended to increase donor registrations and self-reported family discussions.
Fiscal Year 2005 Grantees
Grantee: Center for Organ Recovery and Education
Project Title: West Virginia Organ Donor Project: A Model for Campus Intervention
A mass media campaign and a grassroots advocacy program will be integrated to improve declaration of intent and family notification. The intervention takes place on a large university campus and consists of a media component, in-class presentations, and support from local religious leaders.
Grantee: Donor Network of Arizona
Project Title: Translating Attitudes into Action: A Multi-Site Test of Various Community Forums
A three-phase intervention will target the 80% of the population that is in favor of donation through structured implementation of focus groups, community forums, and talk radio programs. It is intended to increase donor registration by creating contexts where positive attitudes are accessible, social norms support donation, and perception of difficulty in registering is minimized.
Grantee: New York Alliance for Donation
Project Title: Promoting Organ and Tissue Donation through Medical Education
Medical students and medical residents in New York State will receive an educational intervention intended to positively affect knowledge, self-efficacy, and outcome expectations with respect to donation and, for residents, to improve communication with patients and families about donation. The intervention will be delivered via video, lecture, discussion groups, standardized patients, and online learning vignettes.
Grantee: Upstate New York Transplant Services
Project Title: Incorporation of Declaration of Intent to Donate Organs in Cemetery Pre- Arrangements
Cemetery professionals will participate in a program to prepare them to educate their clients, in the context of end-of-life decisions during pre-arrangement meetings, about the importance of donation and methods to declare intent. In addition to increasing rates of declaration of intent, the project is intended to establish effective collaboration among cemeterians, professional organizations, and organ procurement organizations.
Grantee: Washington University School of Medicine
Project Title: Increasing Living Donation in Transplant-Eligible Dialysis Patients
In this group-randomized trial, a living donation education program will be implemented to increase dialysis patients' transplant knowledge, willingness to pursue living donation, and rates of living donation. This health education intervention consists of video and print material, exercises, and interactive discussion with health educators and is intended to promote the benefits of and reduce the fears associated with living donation.
Fiscal Year 2004 Grantees
Grantee: National Kidney Foundation of Illinois
Project Title: Increasing Organ and Tissue Donation in the Service Industry/Factory Workplace: A Peer Educator Approach
This project implemented an evidenced-based workplace intervention designed to increase intentions to donate organs and tissues among lower socioeconomic and minority populations, mainly African-Americans, and Hispanics. The project used peer educators and a group of multifaceted interventions to increase intentions to donate among employees, to promote communication of this decision with family members, and to persuade family members to become donors themselves.
Grantee: National Kidney Foundation of Michigan
Project Title: Validation of the Impact of Lay Health Advisors on Intent to Donate in the African American Community
This study assessed the effectiveness of African American lay health advisors to educate their clients about organ and tissue donation and encourage clients to join the Michigan Donor Registry. The main outcome indicator was measured the number of organ donor registry cards returned to the Michigan Donor Registry. Changes in knowledge about and attitudes towards donation were assessed using pre- and post-tests.
Grantee: National Kidney Foundation of North Carolina
Project Title: Community and Individual Interventions to Increase Organ and Tissue Donation Intent Among African Americans
This project sought to advance understanding of donation decision-making, evaluate individually tailored and community-based interventions, and refine these interventions aimed to increase organ donation among African Americans. The project measured intent to be an organ/tissue donor and documentation of that intent, e.g., by signing an organ donor card, and informing the family of the intent to donate.
Grantee: New Jersey Organ and Tissue Sharing Network
Project Title: The New Jersey Workplace Partnership for Life Campaign and Evaluation
The purpose of this program is to create a significantly higher rate of signed organ donor cards, driver's licenses, and/or New Jersey organ donor registry entries and a significantly higher rate of family notification of donation intent among employees of organizations in New Jersey who are involved in the Workplace Partnership for Life Campaign interventions.
Grantee: Tulane University
Project Title: Home Care Association of Louisiana DONATE LIFE Worksite Partnership
This project implemented and evaluated a workplace partnership model for donor registration in Louisiana that can be incorporated into the existing infrastructure of home care professional organizations without substantially increasing personnel or operating costs.
Grantee: University of Maryland Surgical Associates
Project Title: Evaluation of an Early Educational Program to Increase Live Kidney Donation
This project sought to optimize access to live kidney transplantation for End Stage Renal Disease (ESRD) patients and to assess whether the implementation of an educational program early in the ESRD treatment process, i.e., in dialysis facilities, increases the number of ESRD patients who identify at least one certified willing live kidney donor. The project also measured the proportion of patients who request a kidney donation from family or friends and the number of completed donations.
Grantee: Upstate New York Transplant Services
Project Title: Life Lessons: Development and Implementation of a Comprehensive Program Teaching Teens to Educate Their Peers on Organ and Tissue Donation
This project established an ongoing education program for teens on organ and tissue donation in order to increase the number of high school students committed to donation and to encourage discussions with their families about donation. Students who have been trained to provide organ donation information to their peers established high school donation organizations. The project measured outcomes by the increases in family discussions about donation and increases in the declaration to donate, e.g., organ donor registrants.
Fiscal Year 2003 Grantees
Grantee: Arizona Kidney Foundation, Phoenix, and University of Arizona, Tucson, AZ
Project Title: Hispanic Live Organ Donation: A Strength-Based Approach
The purpose of this two-year project was to implement a dual-featured intervention. The investigators developed and implemented a live organ donor media/community campaign and replicated a deceased donor campaign that was implemented in Tucson and Phoenix. The project aimed to appeal to the enhanced sense of family and community within the Hispanic culture to increase the number of live and deceased donors. Surveys and focus groups evaluated the project's effectiveness.
Grantee: Case Western Reserve University and LifeBanc Organ Procurement Organization, Cleveland, OH
Project Title: Testing the Early Referral and Request Approach (ERRA) Model
This project tested the ERRA Model to increase solid organ donation from brain dead patients. The model consists of hospital-tailored intervention modules plus communication modules based upon the information needs of family decision-makers. The intervention targeted OPO requesters, family decision-makers, and health-care providers. The investigators evaluated hospital barriers to time-sensitive referrals, a health care provider's ability to discuss organ donation with patients' families, and OPO requester's ability to optimize their approach to discussions of donation with families.
Grantee: Life Alliance Organ Recovery Agency, Miami, and University of Miami, Coral Gables, FL
Project Title: A Model Intervention for Increasing Intent of a New Immigrant Population (Haitians in Miami-Dade County, Florida) to Donate Organs and Tissues
This two-year project developed and evaluated a health campaign intervention designed to increase intent to donate among Haitians living in Miami-Dade County. The four-phased intervention looked at the use and effectiveness of a theory-driven media and community outreach campaign to enhance intent to donate in immigrant populations. The campaign used native language, focus groups, and trusted community health providers to develop culturally tailored messages.
Grantee: Life Point Organ Procurement Organization and Medical University of South Carolina, Charleston, SC
Project Title: A Comprehensive Approach to Organ Donation by Incorporation of Family Support Counselors as Members of the Hospital Critical Care Team
This project developed and evaluated a hospital-based requestor model in which counselors provided emotional and bereavement support to families of patients dying in the ICU. The intervention also provided education on brain death and the value of donation to families. The effectiveness was measured by the number of families consenting to organ donation, number of potential donors, and changes in attitude and knowledge of organ donation amongst health care providers.
Grantee: Mount Sinai School of Medicine and New York Organ Donor Network, New York, NY
Project Title: Improving Organ Donation in Chinese Communities in New York City
This project compared two types of interventions aimed at increasing willingness to become an organ donor among Chinese Americans. Grassroots campaigns and a paid-media advertising campaigns were implemented in three Chinese neighborhoods in New York City. The investigators designed culturally sensitive interventions that respect local institutions, persons, and beliefs. The relative effectiveness and cost-effectiveness of the interventions were measured by the number of new registrants on the organ donor registry and by survey.
Grantee: New York Alliance for Donation, Albany, NY, and University at Buffalo, Buffalo, NY
Project Title: A Multi-Campus Classroom Intervention to Increase Organ and Tissue Donation
This project sought to increase the number of college students in New York who communicate their intent to donate their organs and tissues by enrolling in the State's donor registry and notifying their family of their enrollment decision. Students participated in a public communication course-promoting organ and tissue donation that required them to devise and execute campus-wide campaigns to increase declaration rates and family discussion.
Grantee: Organ Procurement Agency of Michigan, Ann Arbor, MI, and University of Michigan-Dearborn, Dearborn, MI
Project Title: A Culturally Sensitive Intervention to Increase Organ Donation Registration Among Asian Pacific Americans
This project studied the Asian Pacific American community from three perspectives: 1) behavior, attitude, willingness, and obstacles to organ donation; 2) receptivity to an organ and tissue donation intervention, and 3) change in organ and tissue donation registry sign-ups if culturally sensitive interventions are administered. The project implemented culturally appropriate interventions and evaluated their effectiveness by changes in awareness, attitude, intent to sign a donor card, and informing family about their decision.
Grantee: South Dakota Lions Eye Bank, Sioux Falls, and South Dakota State University, Brookings, SD
Project Title: A Culturally-Competent Intervention to Increase Organ, Eye, and Tissue Donation on South Dakota's Indian Reservations: A Collaborative Project by the SD Lion's Eye Bank and SD State University, College of Nursing
This project pilot-tested a culturally relevant intervention that included printed materials, videos, and social marketing methods that were implemented in reservation schools, organizations, and activities. The intervention was developed within the context of Sioux Indian cultural beliefs and values and was implemented by Sioux Indian personnel. The project's effectiveness was measured by changes in donor card completion, driver's license designation, and family notification.
Fiscal Year 2002 Grantees
Grantee: Albany Medical College and Center for Donation and Transplant, Albany, NY
Project Title: Social Support for Families Considering Organ Donation: Transferability of the MOD (Mothers of Donors) Squad Volunteer Intervention Program
This project evaluated the effectiveness of a hospital-based peer support intervention on consent rates, family satisfaction, and coping in three regions with markedly different population characteristics. The project built on the successful implementation and testing of the MOD Squad program. Also funded by DoT, the MOD Squad involved support by mothers of donors to families faced with the death of a loved one. This expanded initiative allowed the grantee to evaluate the transferability and generalizability of the outcomes of the MOD Squad intervention.
Grantee: Donor Network of Arizona, Phoenix, and University of Arizona, Tucson, AZ
Project Title: Maximizing Donor Registry Utility via Full Service Kiosks
The purpose of this project was to test the effectiveness of a media campaign in promoting "all-in-one" kiosks to encourage individuals to register as donors.
Grantee: Johns Hopkins Medical Institutions, the Transplant Resource Center of Maryland, and Johns Hopkins University, Baltimore, MD
Project Title: Dissemination of an Interdisciplinary Experiential Training Program for End-of- Life Care and Organ Donation
The purpose of this project was to evaluate the reproducibility of a model training intervention that shown to increase organ donation by 20 percent at a single hospital by implementing it at three additional hospitals in Maryland. The model training intervention uses a standardized patient method with simulated families to teach an organized, interdisciplinary family-centered approach to care, with particular attention to the processes and communications skills for end-of-life decision making and the decoupled model of presenting the option of organ donation. Based on the results of this project, the grantee prepared training materials for dissemination of the model training intervention to hospitals, health systems, and organ procurement organizations throughout the United States.
Grantee: Lifeline of Ohio Organ Procurement Organization, Columbus, and University of Cincinnati, Cincinnati, OH
Project Title: Ohio's First Person Consent Donor Registry - A Help or Hindrance: Comparing Organ Donation through a First Person Consent Donor Registry and Statewide Donation Campaign
The project will used a retrospective and prospective design to compare the impact of Ohio's first person consent donor registry and a statewide media campaign on Ohioans' donation attitudes and behaviors.
Grantee: Life Quest Organ Recovery Services and the University of Florida, Gainesville, FL
Project Title: Increasing Living Kidney Donation: Evaluating the Effectiveness of a Home- Based Intervention
The primary objective of this research was to implement and evaluate a home-based educational intervention designed to increase living kidney donation rates. Adult patients who have been wait-listed for kidney transplantation were randomized to receive either standard clinic-based education about living kidney donation or clinic-based education plus a home-based intervention involving family members and significant others. It was hypothesized that the clinic-based education plus home-based intervention would reach more people, reduce barriers to living donation, and contribute to higher rates of living kidney donation and transplantation.
Grantee: Mid-America Transplant Services and Research & Planning Group, St. Louis, MO
Project Title: The Mobile Learning Center: Is it More Effective than Traditional Educational Efforts?
The purpose of this grant was to study the effectiveness of three different educational interventions—a Mobile Learning Center, OPO presentations, and teacher taught curriculum—on donation attitudes and behaviors of children in grades six to eight. In addition, the grantee evaluated the project's impact on the attitudes, acceptance, and involvement of the teachers who implemented each intervention.
Grantee: The Sharing Network Organ and Tissue Donation Services, Springfield, and Rutgers University, New Brunswick, NJ
Project Title: The University Worksite Organ Donation Promotion Campaign: Targeting Administrators, Faculty, Staff, and Students Using the Organ Donation Model
This university worksite project targeted the willingness of faculty, staff, administrators, and students to sign organ donor cards and discuss organ donation with family members. In addition to increasing the rates of signed cards and family discussion, this project sought to increase knowledge about the most effective channels for organ donation promotion messages. This was a six-site project with three quasi-experimental conditions: Two sites received only mass media messages, while two others received a mass media campaign supplemented with an interpersonal component. These campaign sites were contrasted with two control sites. In sidebar studies at the control sites, a series of qualitative studies examined the factors that impact real-life family discussions about organ donation, with a particular focus on African American families.
Grantee: Thomas Jefferson University, Philadelphia, PA, and University of Michigan, Ann Arbor, MI
Project Title: Targeted Intervention to Increase Living Kidney Donation
The purpose of this project was to increase the number of living kidney donations by targeting the intervention to each patient's and potential donor's stage of cognitive-motivational readiness to consider living donation.
Grantee: University of Washington and Hope Heart Institute, Seattle, WA
Project Title: A Multicultural Urban High School Intervention Program
Building upon previously published piloted studies conducted by the investigators, a culturally-sensitive health education intervention employed quasi-experimental techniques to evaluate the effectiveness of a 40-minute health education session designed to measure students' knowledge, opinions, and behaviors related to the organ donation/transplantation process. This classroom-based intervention was administered separately in 12 Seattle area high schools selected for their racial/ethnic and income diversity. The TransTheoretical Model, or Stages of Change framework, was applied through a 33-item questionnaire self-administered to students in randomly selected classes within each school. Indicators of behavioral change was tracked and measured at pre- and post-tests periods in the treatment and control groups.
Grantee: Upstate New York Transplant Services and State University of New York, Buffalo, NY
Project Title: Model Intervention to Increase African American Living Related and Non-Related Organ Donation
The purpose of this project was to increase the rate of African American living related and non-related organ donation by training ESRD staff to educate patients and potential donors about living donation and improve their attitudes toward donation and by offering an education and support program for patients.
Grantee: Upstate New York Transplant Services and State University of New York, Buffalo, NY
Project Title: Pre-Planning Education: The Role of Funeral Directors as Partners in Increasing Organ and Tissue Donation
The purpose of this project was to increase organ and tissue donation by educating and developing better relationships with funeral home personnel and providing educational materials to funeral homes for distribution to clients involved in the pre-planning process.
Fiscal Year 2001 Grantees
Grantee: Carolina Donor Services, Durham, NC, and University of Rhode Island, Kingston, RI
Project Title: Individual and Campus-Wide Interventions to Increase Donation Intentions among African-American College Students
This project evaluated the efficacy of a theory-based innovative individualized intervention for increasing organ and tissue donation intention rates among African-American college students. It built upon the success of an ongoing campus-wide intervention to increase donation intentions by adding proactive individually tailored interventions to further increase donation intentions.
Grantee: Cleveland Clinic Foundation, Cleveland, OH, and Pennsylvania State University, University Park, PA
Project Title: Utilizing the Structure and Resources of a Multi-Hospital Health System to Improve Organ Donation Rates
This project tested the effects of a program of awareness, education, and training for hospital personnel on rates of organ donation referral and actual donors in a multi-hospital system.
Grantee: Intermountain Organ Recovery System and University of Utah, Salt Lake City, UT
Project Title: Improving Organ and Tissue Donation through a Comprehensive Donor Registry and Statewide Community Outreach Campaign
This project studied the utility of a new, comprehensive, centralized statewide organ and tissue donor registry system and its impact on declarations of intent to donate, consent rates, and actual organ and tissue donation. The project also used the registry to evaluate interest in, and actual, unrelated living donation rates within a multi-hospital system.
Grantee: LifeNet Organ Procurement Organization, Virginia Beach, and Medical College of Virginia Hospitals & Physicians of the Virginia Commonwealth University Health System, Richmond, VA
Project Title: Replication of Family Communication Protocol to Increase Organ and Tissue Donation
The purpose of this project was to increase organ donation and the availability of transplantable organs through replication of a family communication coordinator (FCC) protocol in a general hospital. The hypothesis was that the FCC program would increase organ and tissue donation through better care of families faced with the possibility of donation.
Grantee: National Kidney Foundation of Illinois and University of Chicago, Chicago, IL
Project Title: "Corporate Contributions for Life:" Supporting Organ/Tissue Donation Awareness in the Workplace
This project tested a model program to increase awareness of organ and tissue donation and transplantation in the workplace. Each project year, five major Chicago-area corporations of at least nine branches each participated in study. Corporations were randomly assigned to participate in one of two intervention modes or a control group.
Grantee: North Mississippi Health Services, Tupelo, and Mississippi State University, Starkville, MS
Project Title: Intervention Evaluation for Organ Donation in Two Mississippi Communities
This project will evaluate a series of multimodal interventions to improve attitudes toward and commitment to organ donation in two Mississippi counties with very low donation rates and relatively low support for donation.
Grantee: North Shore Long Island Jewish Health System, Great Neck, and Long Island University, Brookville, NY
Project Title: A Systematic Model for the Improvement of Communication with Family Members about Death and Imminent Death in a Non-Transplant Hospital
This project evaluated the impact of a timed family communication and support intervention on rates of consent for organ donation in five non-transplant hospitals on Long Island. The intervention consisted of utilizing a team of specially trained on-call family communicators to provide information and social support to the family members of patients who were facing imminent brain death.
Grantee: Organ Procurement Agency of Michigan and University of Michigan, Ann Arbor, MI
Project Title: Measuring the Effectiveness of a Culturally Sensitive Approach to Improving Attitudes toward Organ Donation in the Arab-American/Chaldean Community
In response to the paucity of donation research on Middle Eastern ethnic groups in the United States, this project launched and evaluated the effects of a comprehensive community awareness campaign on organ donation rates among targeted Arab-American and Chaldean communities.
Grantee: Trustees of the University of Pennsylvania, Gift of Life Donor Program, and LifeSource Institute for Transplant Research, Education, Ethics, & Policy, Philadelphia, PA
Project Title: A Study of the Presumptive Approach to Consent for Organ Donation
The purpose of this project was to increase the consent and donation rate for organ and tissue transplantation by altering the approach to donor families during the consent discussion. Instead of the traditional approach of offering families the option of donating their loved one's organs. Transplant coordinators approached donor families, regardless of the presence of a driver's license or other form of donor designation, using a more proactive approach or "Presumptive Approach to Consent."
Grantee: University of Miami Organ Procurement Organization, Coral Gables, and University of Miami, Miami, FL
Project Title: A Model Intervention for Increasing Intent to Donate in Primary Care Centers and Churches in Miami-Dade County, Florida
The purpose of this intervention was to increase the number of minority organ and tissue donors by increasing intent to donate coupled with family notification of intent to donate among Blacks, Haitians, and Hispanics living in Miami-Dade County, Florida. A secondary purpose was to document project processes and outcomes to enable replication in other multi-ethnic communities.
Grantee: University of Wisconsin Hospital and Clinics Organ Procurement Organization and Knupp & Watson, Madison, WI
Project Title: A Model for the Implementation of Donation after Cardiac Death (DCD) Protocols
The purpose of this project was to produce a verifiable and demonstrable increase in organ donations through implementation and testing of a protocol for donation after cardiac death. This model included the modification of existing specialized designated requester training modules to include information related specifically to DCD.
Grantee: Upstate New York Transplant Services and State University of New York, Buffalo, NY
Project Title: "Legacy for Life:" Lawyer's Role in Organ and Tissue Donation Education
This project implemented a program to educate the legal community about organ/tissue donation and prepare and encourage attorneys to educate their clients about the critical need for donation. Client declarations of intent to donate coupled with family notification served as outcome measures. This intervention also aimed to enhance the level of communication between the legal community and health care providers with the organ procurement organization to increase the likelihood that an individual's wish to donate is fulfilled.
Fiscal Year 2000 Grantees
Grantee: Alabama Organ Center and University of Alabama, Birmingham, AL
Project Title: A Model Intervention for Increasing African-Americans' Intent to Donate in Two Counties in Alabama
The purpose of this project was to test the use of church health advocates to promote donation in two Alabama counties. Project components included provision of educational materials, incorporation of the clergy person as an agent of change and promotion of the state donor registry.
Grantee: Asian Transplant Awareness in Southern California, Orange, and Southern California Organ Procurement Center, Los Angeles, CA
Project Title: A Grass Roots Effort to Increase Organ Donation Among Asians in Southern California
This project focused on Chinese and Vietnamese Asian populations, testing the involvement of trained requestors who discuss donation in the native tongue of families of potential donors. It also evaluated the target groups' attitude toward donation as affected by a media campaign and an existing targeted approach for increasing organ donation in Asian communities.
Grantee: New York Organ Donor Network and Columbia University, New York City, NY
Project Title: Project to Support Donation: Changing the Culture of Organ and Tissue Donation
A team of crisis support specialists will provide crisis intervention services to suddenly bereaved and grieving family members of potential organ donors. A subset of the team will be hospital-based full-time. The project team will be evaluated for its effectiveness in supporting families and increasing rates of consent.
Grantee: Southern California Organ Procurement Center, Los Angeles, and Strategy Research Corporation, Laguna Hills, CA
Project Title: Hispanic Media Campaign
The purpose of the project was to evaluate the success and cost-effectiveness of a targeted culturally sensitive media campaign to increase organ and tissue donation in the Hispanic community. Input from community leaders helped to shape the message to be delivered through a variety of media.
Grantee: Upstate New York Transplant Services and State University of New York, Buffalo, NY
Project Title: "Talk It Up:" Students and Families Discussing Organ Donation
Through a teacher training program and a class-assigned family interview, the project provided high school students with the knowledge and incentive to promote family discussion and shared decision-making about organ donation. The approach included a post-discussion "debriefing" session as well as the use of a take-home study guide and a resource manual.
Fiscal Year 1999 Grantees
Grantee: Albany Medical College and Center for Donation and Transplant, Albany, NY
Project Title: Testing and Replication of a Model Volunteer Program
The purpose of this project was to increase donation consent rates by evaluating and replicating a volunteer program that teaches mothers of organ donors to counsel potential donor families about the option of donation. The project enabled an assessment of the donor family member's role in, and impact on, the donation decision process.
Grantee: California Transplant Donor Network, San Francisco, CA, and Market Study International, Houston, TX
Project Title: Proposal to Increase Organ Donation Consent Rates Involving Targeted Minority Populations
This project tested the impact of a two-pronged approach consisting of outreach efforts and requestor training on family consent among African Americans and Asians in Northern California.
Grantee: Donor Network of Arizona, Phoenix, and University of Arizona College of Medicine, Tucson, AZ
Project Title: Comprehensive Approach to Raising Organ and Tissue Donation Consent in the Hispanic Population
The purpose of this project was to increase donation consent rates among Hispanic families through a comprehensive approach—including community, media, and requester outreach—to increase donor awareness and family discussions.
Grantee: Education Development Center and New England Organ Bank, Newton, MA
Project Title: Increasing Organ Donation by Enhancing End-of-Life Care: A Family-Centered Quality Improvement Program
This project was based on empirical research indicating that families are more likely to consent to organ donation if they are satisfied with the care that their loved ones received at the end of life. The New England Organ Bank and the Education Development Center of Boston collaborated with hospitals in Massachusetts, Rhode Island, and New Hampshire to enhance end-of-life care and improve the donation request process. The study aimed to increase health professionals' comfort and skill discussing death and dying and to build hospitals' capacity to support families through the end-of-life period.
Grantee: Emory University and Life Link of Georgia, Atlanta, GA
Project Title: The Renaissance State-Wide Initiative to Increase Organ Donation in the State of Georgia
The purpose of this project was to replicate a successful donation-enhancing program launched at Emory University Hospital in Atlanta known as the "Renaissance Project." This end-of-life care model was expanded to four additional Georgia hospitals with the goal of enhancing family support practices and increasing the number of organ donors at each institution.
Grantee: Golden State Donor Services, Sacramento, CA, and Market Study International, Houston, TX
Project Title: Increasing Donation in the Hispanic Community through Mass Media
The purpose of his project was to reverse the declining rate of donation consent among Hispanic families in the Sacramento area by implementing and evaluating an ethnically sensitive media campaign. Such an undertaking is especially critical in California due to the disproportionate rate at which Hispanics are placed on the transplant waiting list because of end-stage organ failure.
Grantee: Howard University and Minority Organ and Tissue Transplant Education Program (MOTTEP), Washington, DC
Project Title: "Say YES!" to Organ and Tissue Donation: Implementation and Evaluation of a Promising Youth Intervention
The purpose of this project was to increase the number of youth registering to become donors when obtaining a driver's license by encouraging family discussions and promoting an informed donation decision. This program enhanced existing school-age driver curriculum with materials to increase family discussion of organ and tissue donations, raise positive consent rates, and increase youth awareness of organ donation and the need for donors.
Grantee: Johns Hopkins University and Transplant Resource Center of Maryland, Baltimore, MD
Project Title: Interdisciplinary Experiential Training for End-of-Life Care and Organ Donation
This project implemented and evaluated a family-centered program focusing on end-of-life decision making and organ donation discussions with the goal of increasing the frequency of donation consent. The program utilized a multi-disciplinary approach involving such health care professionals as physicians, nurses, hospital clergy, and organ procurement coordinators who play consistent, important, and inter-dependent roles in caring for patients and families when organ donation is possible.
Grantee: Kentucky Organ Donor Affiliates, Louisville, and University of Kentucky, Lexington, KY
Project Title: Increasing Commitment to Organ and Tissue Donation through a Work-Site Intervention
Kentucky Organ Donor Affiliates collaborated with United Parcel Service to study the effect of a work-place donor education program and develop a model that could be used in other corporate education programs throughout the country.
Grantee: LifeGift Organ Donation Center, Houston, and University of Houston, Clear Lake, TX
Project Title: African-American Community Outreach Project
The purpose of this program was to increase family donation discussions and minority community support by implementing and evaluating an intensive education and training program targeting African American religious and spiritual leaders in Harris County, TX. The project prepared clergy to develop and implement effective donation education and support programs for their congregations.
Grantee: LifeGift Organ Donation Center, Houston, and University of Houston, Clear Lake, TX
Project Title: Project to Increase Organ Recovery from Level 1 Trauma Centers
The purpose of this project was to replicate a successful pilot program that significantly increased organ donation by placing "in house procurement coordinators" in two Level 1 Trauma Centers. The grantee replicated the model in Detroit, Seattle, and Houston in hospitals that demonstrated significant untapped donor potential.
Grantee: Louisiana Organ Procurement Agency, Metairie, and Keating Magee & Associates, New Orleans, LA
Project Title: The Kiosk Learning Center: A Community Outreach Approach to Increase Donor Consent Rates, Public Access, and Overall Awareness
This project attempted to improve driver's license renewal efficiency and enhance donor education and registry sign-up by placing in public venues ATM-like kiosks that enable these functions.
Grantee: National Kidney Foundation, New York, NY, and ITG Enterprises, Columbia, MO
Project Title: Take Time to Talk: A Family Discussion Guide
The National Kidney Foundation studied the feasibility of incorporating a donation education program into funeral pre-planning activities. The goal of this program was to provide individuals the opportunity to conduct family discussions about donation at the time they are making other end-of-life arrangements.
Grantee: Oklahoma Organ Sharing Network, Oklahoma City, and University of Oklahoma, Norman, OK
Project Title: Project Team Life
The purpose of the project was to increase commitment to donate by implementing and evaluating the impact of an organ and tissue donation and transplantation curriculum in elementary and secondary public schools in Oklahoma.
Grantee: Organ Procurement Agency of Michigan, TransWeb, and University of Michigan, Ann Arbor, MI
Project Title: Measuring the Effectiveness of a Multimedia Internet-Based Approach to Increasing Donor Registry Participation
The purpose of this project was to expand a previously existing transplant education Internet site by creating a new path focusing on the donor family's view of organ donation. The project's goal was is to encourage participants to join a donor registry and provide specially designed electronic greeting cards to notify family members of the registrant's desire to donate.
Grantee: Regional Organ Bank of Illinois and University of Illinois, Chicago, IL
Project Title: Impact of Educational Interventions Regarding Organ Donation on Declaration of Intention to Donate and on Family Discussion in the African American Community
The purpose of this project was to increase the number of African-Americans who were willing to join the Illinois organ donor registry and talk to their families about their decision by assessing the effectiveness of two separate strategies to encourage registry participation and by conducting and evaluating an ethnically sensitive media campaign.
Grantee: South-Eastern Organ Procurement Foundation, Richmond, VA, and the University of Rhode Island, Providence, RI
Project Title: Stage-Based Curriculum Training for Procurement Coordinators to Increase Family Consent for Organ and Tissue Donation
The aim of this project was to improve family donation consent rates by training procurement coordinators to match their donation requests to reflect the family's readiness to donate. This project, involving staff from 16 of the Nation's 61 organ procurement organizations, was the first multi-center study of requester training program effectiveness.
Grantee: Upstate New York Transplant Services and State University of New York, Buffalo, NY
Project Title: Decision for Life: An Intervention to Increase Organ Donation in the African American Community
The purpose of this program was to increase the number of African Americans in the Buffalo urban community who have signed donor cards and discussed donation with their families. It trained African American community educators to implement public education programs and increased medical student and resident awareness of the importance of approaching potential donor families in a culturally sensitive manner.