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.

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.