Understanding the pros and cons of organ donation decision-making: Decisional balance and expressing donation intentions among African Americans.

Increasing public commitment to organ donation is critical to improving donor kidney availability for end-stage renal disease patients desiring transplant. This study surveyed (N = 1339) African Americans, measuring perceived pros relative to cons of organ donation, to evaluate an existing Transtheoretical Model decisional balance scale and associations between decisional balance and expressing donation intentions. Findings supported the existing scale structure. More positive decisional balance ratios were associated with 1.76 times the odds of expressing intentions (95% confidence interval = 1.52-2.04). Pros were more strongly linked to donation intentions than cons. Greater understanding of organ donation decision-making is valuable for informing interventions that encourage donation.

A Culturally Sensitive Web-based Intervention to Improve Living Donor Kidney Transplant Among African Americans.

INTRODUCTION: There are pervasive racial disparities in access to living donor kidney transplantation, which for most patients with end-stage renal disease (ESRD) represents the optimal treatment. We previously developed a theory-driven, culturally sensitive intervention for African American (AA) patients with kidney disease called Living ACTS (About Choices in Transplantation and Sharing) as a DVD and booklet, and found this intervention was effective in increasing living donor transplant knowledge. However, it is unknown whether modifying this intervention for a Web-based environment is effective at increasing access to living donor transplantation. METHODS: We describe the Web-based Living ACTS study, a multicenter, randomized controlled study designed to test the effectiveness of a revised Living ACTS intervention in 4 transplant centers in the southeastern United States. The intervention consists of a Web site with 5 modules: Introduction, Benefits and Risks, The Kidney Transplant Process, Identifying a Potential Kidney Donor, and ACT Now (which encourages communication with friends and family about transplantation). RESULTS: This study will enroll approximately 800 patients from the 4 transplant centers. The primary outcome is the percentage of patients with at least 1 inquiry from a potential living donor among patients who receive Living ACTS as compared with those who receive a control Web site. CONCLUSION: The results from this study are expected to demonstrate the effectiveness of an intervention designed to increase access to living donor transplantation among AA individuals. If successful, the Web-based intervention could be disseminated across the >250 transplant centers in the United States to improve equity in living donor kidney transplantation.

A Community-Based Study of Giving ACTS: Organ Donation Education for African American Adults.

BACKGROUND: Transplantation continues to be the therapy of choice for people experiencing end-stage organ failure. African Americans (AAs) are overrepresented among those awaiting an available organ for the purpose of a transplant, yet donate at rates lower than other races due to a list of well-studied barriers. The Giving ACTS (About Choices in Transplantation and Sharing) Intervention was developed to provide culturally appropriate messaging to AAs about organ and tissue donation and transplantation (OTDT). The purpose of this community-based study was to test the extent to which the intervention was effective in (1) improving donation-related knowledge and attitudes among AA participants, and (2) increasing registration on the state donor registry. METHODS: Using a single-group, pre-post design, 1,585 participants received the intervention in small groups hosted in community settings. RESULTS: From baseline to immediate follow-up, participants significantly increased in OTDT-related knowledge, beliefs and attitudes, endorsement of the positive consequences of donation, and willingness to donate (all ps < .001). Participants' beliefs about the negative consequences of organ and tissue donation, however, did not significantly change, and registration on the state donor registry was negligible (1.3%). CONCLUSION: Results suggest that Giving ACTS was generally successful in improving attitudes and beliefs; the intervention, however, was not effective in changing participants' beliefs about the negative consequences of OTDT, or increasing actual registration behaviors. Future studies in this area should be conducted to empirically evaluate the role of distrust in healthcare systems among AAs and its possible mediating effect on the relationship between donation-related education and the desired health behaviors.

Transplant Center Patient Navigator and Access to Transplantation among High-Risk Population: A Randomized, Controlled Trial.

BACKGROUND AND OBJECTIVES: Barriers exist in access to kidney transplantation, where minority and patients with low socioeconomic status are less likely to complete transplant evaluation. The purpose of this study was to examine the effectiveness of a transplant center-based patient navigator in helping patients at high risk of dropping out of the transplant evaluation process access the kidney transplant waiting list. DESIGN, SETTING, PARTICIPANTS & MEASUREMENTS: We conducted a randomized, controlled trial of 401 patients (n=196 intervention and n=205 control) referred for kidney transplant evaluation (January 2013 to August 2014; followed through May 2016) at a single center. A trained navigator assisted intervention participants from referral to waitlisting decision to increase waitlisting (primary outcome) and decrease time from referral to waitlisting (secondary outcome). Time-dependent Cox proportional hazards models were used to determine differences in waitlisting between intervention and control patients. RESULTS: At study end, waitlisting was not significantly different among intervention (32%) versus control (26%) patients overall (P=0.17), and time from referral to waitlisting was 126 days longer for intervention patients. However, the effectiveness of the navigator varied from early (<500 days from referral) to late (≥500 days) follow-up. Although no difference in waitlisting was observed among intervention (50%) versus control (50%) patients in the early period (hazard ratio, 1.03; 95% confidence interval, 0.69 to 1.53), intervention patients were 3.3 times more likely to be waitlisted after 500 days (75% versus 25%; hazard ratio, 3.31; 95% confidence interval, 1.20 to 9.12). There were no significant differences in intervention versus control patients who started evaluation (85% versus 79%; P=0.11) or completed evaluation (58% versus 51%; P=0.14); however, intervention patients had more living donor inquiries (18% versus 10%; P=0.03). CONCLUSIONS: A transplant center-based navigator targeting disadvantaged patients improved waitlisting but not until after 500 days of follow-up. However, the absolute effect was relatively small.

Implementation of a Web-Based Organ Donation Educational Intervention: Development and Use of a Refined Process Evaluation Model.

BACKGROUND: The lack of available organs is often considered to be the single greatest problem in transplantation today. Internet use is at an all-time high, creating an opportunity to increase public commitment to organ donation through the broad reach of Web-based behavioral interventions. Implementing Internet interventions, however, presents challenges including preventing fraudulent respondents and ensuring intervention uptake. Although Web-based organ donation interventions have increased in recent years, process evaluation models appropriate for Web-based interventions are lacking. OBJECTIVE: The aim of this study was to describe a refined process evaluation model adapted for Web-based settings and used to assess the implementation of a Web-based intervention aimed to increase organ donation among African Americans. METHODS: We used a randomized pretest-posttest control design to assess the effectiveness of the intervention website that addressed barriers to organ donation through corresponding videos. Eligible participants were African American adult residents of Georgia who were not registered on the state donor registry. Drawing from previously developed process evaluation constructs, we adapted reach (the extent to which individuals were found eligible, and participated in the study), recruitment (online recruitment mechanism), dose received (intervention uptake), and context (how the Web-based setting influenced study implementation) for Internet settings and used the adapted model to assess the implementation of our Web-based intervention. RESULTS: With regard to reach, 1415 individuals completed the eligibility screener; 948 (67.00%) were determined eligible, of whom 918 (96.8%) completed the study. After eliminating duplicate entries (n=17), those who did not initiate the posttest (n=21) and those with an invalid ZIP code (n=108), 772 valid entries remained. Per the Internet protocol (IP) address analysis, only 23 of the 772 valid entries (3.0%) were within Georgia, and only 17 of those were considered unique entries and could be considered for analyses. With respect to recruitment, 517 of the 772 valid entries (67.0%) of participants were recruited from a Web recruiter. Regarding dose received, no videos from the intervention website were watched in their entirety, and the average viewing duration was 17 seconds over the minimum. With respect to context, context analysis provided us with valuable insights into factors in the Internet environment that may have affected study implementation. Although only active for a brief period of time, the Craigslist website advertisement may have contributed the largest volume of fraudulent responses. CONCLUSIONS: We determined fraud and low uptake to be serious threats to this study and further confirmed the importance of conducting a process evaluation to identify such threats. We suggest checking participants' IP addresses before study initiation, selecting software that allows for automatic duplicate protection, and tightening minimum requirements for intervention uptake. Further research is needed to understand how process evaluation models can be used to monitor implementation of Web-based studies.

Exploring Donotion-related Knowledge Attitudes, Beliefs and Distrust Among African Americans.

Within the field of organ donation, multiple studies have shown differences in patterns of trust, however, it is unclear which elements are significantly related to donation decision making among African Americans. This study sought to disentangle the construct of trust by parceling out measures related to the healthcare system, the donation/allocation system, and the physician; and determine the relationship of these dimensions to attitudes toward organ and tissue donation. Cross-sectional survey data were gathered from 585 African American adults residing in the Atlanta metropolitan area. Results indicate that varying dimensions of trust function differently in their influence on attitudes toward donation. Our findings suggest that trust is critical to donation decision-making and should be measured with a multidimensional approach, particularly among racial/ethnic groups with complex histories with the healthcare system. This study underlines the need for a more tailored, individualized approach to promoting organ and tissue donation among African Americans. ACKNOWLEDGEMENTS: We also thank Rianot Amzat, Mohua Basu and Rhonda DeLaremore for their assistance with data collection, cleaning, entry, and analysis.

Living donor transplant education for African American patients with end-stage renal disease.

CONTEXT: Despite numerous benefits of live donor kidney transplant (LDKT), patient-level barriers often prevent African Americans from considering LDKT. Educational interventions designed to address patient-level barriers may increase willingness among African American patients with end-stage renal disease to explore LDKT as a treatment option. OBJECTIVE: To assess the effectiveness of a culturally sensitive educational intervention called Living ACTS (About Choices in Transplantation and Sharing) that was designed to address patient-level barriers to LDKT among African American patients with end-stage renal disease. DESIGN/PARTICIPANTS: Patients were randomized to intervention (n = 136) or control (n = 132) groups. They completed baseline measures and then viewed either the Living ACTS or control video. Both groups then completed an immediate follow-up measure and a 6-month assessment administered via telephone. MAIN OUTCOME MEASURES: Self-reported knowledge about LDKT, willingness to talk to the patient's family about LDKT, and perceived benefits of LDKT were measured at 3 time points. RESULTS: At 6-month follow-up, intervention participants demonstrated a significantly greater increase in knowledge of LDKT than control participants (F2,229=3.08, P= .05). Intervention participants expressed greater willingness to talk to patients' families about LDKT than did control participants from baseline through 6-month follow-up (F1,230 = 7.11, P= .008). Finally, at immediate follow-up, intervention participants reported greater endorsement of the benefits of LDKT than did control participants (F2,223 = 14.27, P< .001); however, this effect had disappeared by the 6-month follow-up. CONCLUSIONS: Living ACTS is effective at increasing and maintaining knowledge about LDKT among African American patients with end-stage renal disease who are considering transplant.

Understanding African American's religious beliefs and organ donation intentions.

African Americans are overrepresented on the organ transplant waiting list and underrepresented among organ and tissue donors. One of the most highly noted reasons for lack of donation is the perception that donation is contrary to religious beliefs. The purpose of this cross-sectional study is to explore the complexities of religion (beliefs, religiosity, and religious involvement) and its association with willingness to donate and the written expression of donation intentions. Findings from a sample of 505 African American participants suggest that religion is a multidimensional construct and results differ depending on how the construct is measured and operationalized.

Understanding the relationship between trust in health care and attitudes toward living donor transplant among African Americans with end-stage renal disease.

Transplantation is the favored therapy for patients with end-stage renal disease (ESRD). Unfortunately, demand for available organs far outpaces the supply. African Americans are disproportionately affected by the ever-widening gap between organ supply and demand. Additionally, structural, biological, and social factors contribute to feelings of unease some African Americans may feel regarding living donor transplant (LDT). The present research examines the relationship between trust in health care and attitudes toward LDT among African American ESRD patients. We hypothesized that lower trust in health care would be significantly associated with negative attitudes toward LDT, and that this relationship would be moderated by patient attitudes toward dialysis. Data were collected from August 2011 to April 2012 as part of a larger study. Measures included trust (of doctors, racial equity of treatment, and hospitals) and attitudes toward both LDT and dialysis. Bivariate analysis revealed that trust in one's doctor, hospital, and in racial equity in health care was significantly correlated with attitudes toward LDT (r = 0.265; r = 0.131; and r = 0.202, respectively). Additionally, attitudes toward dialysis moderated the relationships between Trust in Doctors/Attitudes toward LDT and Trust in Racial equity of treatment/Attitudes toward LDT. Findings suggest a strong relationship between trust in health care and attitudes toward LDT. These findings also shed light on how dialysis experiences are related to the relationship between trust in health care and attitudes toward LDT.

Project ACTS II: organ donation education for African American adults.

OBJECTIVE: Project ACTS "About Choices in Transplantation and Sharing" is a culturally sensitive intervention designed to address organ donation concerns among African American adults. Our study sought to evaluate the efficacy of two versions of the Project ACTS intervention and to determine whether reviewing materials in a group setting would be more effective at increasing participants' interest in organ and tissue donation than allowing participants to review the materials at home with friends and family. DESIGN: A pre-post simple factorial experimental design was used to assess differences between intervention package (Project ACTS I vs II) and mode of delivery (group vs take home). METHODS: Participants completed a baseline and 1-year follow-up assessment of donation-related knowledge, attitudes, and interest. MAIN OUTCOME MEASURES: A summed score that represents participants' interest in being recognized as an organ donor on their driver's license, via donor card, and by talking to family. RESULTS: From baseline to follow-up, participants increased their knowledge, attitudes, and interest in being recognized as an organ donor regardless of intervention package (Ps<.05). Regarding setting, participants who reviewed materials in a group setting demonstrated greater increase from baseline to follow-up in interest in organ donation (beta=.22, P<.01) and positive attitudes toward donation (beta=.22, P<.05) than those who were allowed to review materials at home with friends and family. CONCLUSION: Project ACTS I and II are equally efficacious; reviewing the intervention in a group setting may be necessary for low vested interest/high ambivalence health behaviors such as organ donation.

Impact of a patient education program on disparities in kidney transplant evaluation.

BACKGROUND AND OBJECTIVES: In 2007, the Emory Transplant Center (ETC) kidney transplant program implemented a required educational session for ESRD patients referred for renal transplant evaluation to increase patient awareness and decrease loss to follow-up. The purpose of this study was to evaluate the association of the ETC education program on completion of the transplant evaluation process. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Incident, adult ESRD patients referred from 2005 to 2008 were included. Patient data were abstracted from medical records and linked with data from the United States Renal Data System. Evaluation completion was compared by pre- and posteducational intervention groups in binomial regression models accounting for temporal confounding. RESULTS: A total of 1126 adult ESRD patients were examined in two transplant evaluation eras (75% pre- and 25% postintervention). One-year evaluation completion was higher in the post- versus preintervention group (80.4% versus 44.7%, P<0.0001). In adjusted analyses controlling for time trends, the adjusted probability of evaluation completion at 1 year was higher among the intervention versus nonintervention group (risk ratio=1.38, 95% confidence interval=1.12-1.71). The effect of the intervention was stronger among black patients and those patients living in poor neighborhoods (likelihood ratio test for interaction, P<0.05). CONCLUSIONS: Standardizing transplant education may help reduce some of the racial and socioeconomic disparities observed in kidney transplantation.

Distrust in the healthcare system and organ donation intentions among African Americans.

The purpose of this study is to further understanding of the association between distrust in the healthcare system and written and verbal expressions of donation intentions among African Americans. We hypothesize that distrust in the healthcare system will be significantly, positively associated with both verbal and written donation intentions. Five hundred and eighty five participants completed a 98-item survey that included scales on distrust in the healthcare system and donation intentions. Bivariate analyses (t-tests, ANOVA, chi-square tests and odds ratios) were used to explore the extent to which donation intentions and distrust in the healthcare system varied by demographic characteristics and the association between the distrust in the healthcare system scale and verbal and written donation intentions. Separate logistic regressions were performed with each of the dependent variables to see if significant associations remained while controlling for confounders. Findings based on the multiple regression indicate that when controlling the participant's education level, distrust in the healthcare system was not significantly related to written donation intentions (OR = 1.04; P = .12). When controlling for education level, health insurance status, Community Health Advocates group and marital status, distrust in the healthcare system was significantly associated with verbal donation intentions (OR = 1.08; P < 0.05). Our results suggest that distrust in the healthcare system varies in the way that it is associated with donation intentions. Future organ donation studies should be conducted to determine the pathways through which distrust in the healthcare system impacts different types of organ donation intentions.

Testing the utility of a modified organ donation model among African American adults.

African Americans are overrepresented on the organ transplant waiting list because they are disproportionately impacted by certain health conditions that potentially warrant a life-saving transplant. While the African American need for transplantation is considerably high, organ and tissue donation rates are comparatively low, resulting in African Americans spending more than twice the amount of time on the national transplant waiting list as compared to people of other racial/ethnic backgrounds. There are a multitude of factors that contribute to the reluctance expressed by African Americans with respect to organ donation. This study proposes the use of an adaptation of the Organ Donation Model to explore the ways in which knowledge, trust in the donation/allocation process, and religious beliefs impact African American donation decision making. Bivariate and path analyses demonstrated that alignment with religious beliefs was the greatest driving factor with respect to attitudes towards donation; attitudes were significantly associated with donation intentions; and knowledge is directly associated with intentions to serve as a potential deceased organ donor. The significance of these variables speaks to the importance of their inclusion in a model that focuses on the African American population and offers new direction for more effective donation education efforts.

Project ACTS: an intervention to increase organ and tissue donation intentions among African Americans.

This study sought to evaluate the effectiveness of Project ACTS: About Choices in Transplantation and Sharing, which was developed to increase readiness for organ and tissue donation among African American adults. Nine churches (N = 425 participants) were randomly assigned to receive donation education materials currently available to consumers (control group) or Project ACTS educational materials (intervention group). The primary outcomes assessed at 1-year follow-up were readiness to express donation intentions via one's driver's license, donor card, and discussion with family. Results indicate a significant interaction between condition and time on readiness to talk to family such that participants in the intervention group were 1.64 times more likely to be in action or maintenance at follow-up than were participants in the control group (p = .04). There were no significant effects of condition or condition by time on readiness to be identified as a donor on one's driver's license and by carrying a donor card. Project ACTS may be an effective tool for stimulating family discussion of donation intentions among African Americans although additional research is needed to explore how to more effectively affect written intentions.

Correlates of support for living donation among African American adults.

CONTEXT: Living donation is studied with much less intensity among African Americans than among the general population. Examination of barriers to living donation can lead to effective strategies to educate dialysis patients and their families about this alternative. OBJECTIVE: To explore the correlates of likelihood of becoming a living donor among community-recruited African American adults. DESIGN/PARTICIPANTS: Cross-sectional data were gathered via self-administered questionnaire from 425 African American adults, age 18 years and older, who were recruited from 9 churches in Atlanta. MAIN OUTCOME MEASURES: Self-reported likelihood of becoming a living donor to a close family member, an extended family member or friend, or a stranger. RESULTS: More than three-quarters of participants were willing to act as living donors to a close family member or spouse and two-thirds to friends or extended family. For likelihood of donating to a friend or extended family member, only willingness to engage in deceased donation was significantly associated; to a stranger, both willingness to engage in deceased donation and attitudes toward donation were significantly associated. Knowledge of and personal experiences with donation and/or transplantation were not significantly associated with likelihood of any type of living donation. CONCLUSIONS: Findings indicate widespread support for living donation to a close family member or spouse. These findings have important implications for dialysis patients who must decide whether to approach friends and/or family about the possibility of serving as a living donor and emphasize the need for interventions to help facilitate this process.

Understanding the relationship between knowledge and African Americans' donation decision-making.

OBJECTIVE: To explore the association between different types of knowledge related to donation and transplantation and the expression of donation intentions via one's driver's license, a donor card, or sharing one's wishes with family. METHODS: Cross-sectional data were gathered via self-administered questionnaire from 425 Black adults, age 18 years and older who were recruited from nine churches in a large metropolitan area in the southeast United States. RESULTS: Results indicate that knowledge of the allocation system and experiential knowledge of a transplant recipient are associated with donation intentions after controlling for age, gender, and highest level of education. However, the following types of knowledge were unrelated to donation intentions: donation-related statistics (including an understanding of African Americans' overrepresentation among those in need), the donation process, the process for determining medical suitability, and religious institutions' support for donation. CONCLUSIONS: Findings suggest that the relationship between donation-related knowledge and donation intentions is complex and may depend on the specific type of knowledge being measured. PRACTICE IMPLICATIONS: Knowledge of the allocation system and experiential knowledge of a recipient may be critical aspects of the donation decision-making process. Research findings suggest the need for an educational approach that seeks to improve the specific types of knowledge that are most strongly associated with donation intentions.

Understanding the role of clergy in African American organ and tissue donation decision-making.

OBJECTIVES: To describe and understand the attitudes, beliefs, and experiences towards organ and tissue donation among African American clergy in Atlanta, Georgia, USA. The secondary objective is to understand what messages clergy are providing to their parishioners relative to organ and tissue donation, and what their perceived role is in donation education. DESIGN: A qualitative study in which African American clergy (n=26) participated in four focus groups. RESULTS: African American clergy, though generally supportive of organ and tissue donation in principle, have serious reservations about donation due to perceived inequalities in the donation and transplantation system. The clergy did not personally hold religious concerns about donation, but expressed that these concerns were a major barrier to donation among their parishioners. None of the clergy knew the written position that their religion took on donation; they acknowledged the need for more education for them and their parishioners on this topic. They also felt that as religious leaders, they could play an important role in promoting organ and tissue donation among African American parishioners. CONCLUSIONS: African American clergy and religious leaders may play an important role towards improving willingness to donate among African American parishioners, but more education and advocacy is needed to prepare them for this role.

Moving beyond attitudinal barriers: understanding African Americans' support for organ and tissue donation.

PURPOSE: African Americans are disproportionately represented among individuals in need of an organ transplant, due in part to low donation rates in this population. The research literature has focused on attitudinal barriers to donation; however, the current study explores individual experiences and values that contribute to supportive attitudes toward organ and tissue donation. PROCEDURES: Focus group participants were 26 African-American clergymen and 42 African-American parishioners recruited from seven Christian churches in the metro Atlanta area. FINDINGS: Although a large number of participants had previous exposure to organ and tissue donation and transplantation, the majority of these experiences were negative, and participants felt a general fear and lack of knowledge about the process of donation and transplantation. Despite these negative experiences, respondents reported personal values (e.g., the desire to help others and acceptance of group responsibility) and religious values (e.g., the desire to carry out God's will and to have faith in God) that contribute to supportive attitudes toward organ and tissue donation. CONCLUSION: An understanding of supportive attitudes toward donation may help improve the development of effective culturally sensitive intervention messages targeting the African-American religious community with the ultimate goal of increasing the pool of organs available for transplantation.