Developing online communication training to request donation for vascularized composite allotransplantation (VCA): improving performance to match new US organ donation targets.

Background: Approaching families of dying or newly deceased patients to donate organs requires specialized knowledge and a mastery of relational communication. As the transplantation field has progressed, Donation Professionals (DPs) are also leading conversations with family decision makers (FDMs) about the donation of uncommon anatomical gifts, such as face, hands, genitalia, referred to as Vascularized Composite Allotransplants (VCA) without much training or experience. To address the need for training, we adapted and beta tested an evidenced-based communication training program for donation discussions to VCA requests.

Dialysis Patients' Social Networks and Living Donation Offers.

Rationale & Objective: Most living kidney donors are members of a hemodialysis patient's social network. Network members are divided into core members, those strongly connected to the patient and other members; and peripheral members, those weakly connected to the patient and other members. We identify how many hemodialysis patients' network members offered to become kidney donors, whether these offers were from core or peripheral network members, and whose offers the patients accepted.

A Nominal Group Technique Study of Patients Who Identify as Black or African American and Access to Renal Transplantation.

Completion of the renal transplant evaluation has been associated with several barriers for patients who identify as Black or African American. This study sought to prioritize barriers to and motivators of completing the renal transplant evaluation. Semi-structured interviews and focus groups with a nominal group technique were used to generate priority scores.

A mixed-methods examination of public attitudes toward vascularized composite allograft donation and transplantation.

Background: This mixed-methods study examined the general public's knowledge and attitudes about vascularized composite allografts. The availability of these anatomical gifts to treat individuals with severe disfiguring injuries relies largely on decisions made by family members. If vascularized composite allograft transplantation is to become more readily available, the knowledge and beliefs of the general public must be explored to ensure vascularized composite allograft donation approaches adequately support the donation decision-making process.

The psychosocial burden of visible disfigurement following traumatic injury.

Hundreds of thousands of individuals experience traumatic injuries each year. Some are mild to moderate in nature and patients experience full functional recovery and little change to their physical appearance. Others result in enduring, if not permanent, changes in physical functioning and appearance.

Culturally Tailored and Community-Based Social Media Intervention to Promote Organ Donation Awareness among Asian Americans: "Heart of Gold".

Organ donation disparities among ethnic minorities have persisted for decades, especially among Asian Americans (AAs). AAs represent a substantial proportion of the national transplant waitlist but have historically had the lowest organ donation rate in the United States. Community based and culturally tailored (CBCT) interventions are needed to increase donor designation within AA communities.

Evaluation of an eLearning System to Train Health Professionals to Communicate about Vascularized Composite Allotransplantation with Donor Families.

Vascularized composite allotransplantation (VCA) donation relies on obtaining surrogate authorization. Yet, many donor professionals have limited experience discussing composite allograft donation. Using virtual and interactive elements, the eLearning program, Communicating Effectively about Donation for Vascularized Composite Allotransplantation (CEaD-VCA), was developed to enhance the quality of donor professionals' communication approach.

Organ Donation Willingness Among Asian Americans: Results from a National Study.

Asian Americans are the fastest growing racial group in the USA, but their health disparities are often overlooked. Although their needs for transplantable organs are substantial, they have the lowest rates of organ donation per million compared to other Americans by race. To better understand Asian Americans' disposition toward organ donation, a self-administered survey was developed based on formative data collection and guidance from a Community Advisory Board composed of Asian American stakeholders.

Does Whom Patients Sit Next to during Hemodialysis Affect Whether They Request a Living Donation?

Background: The seating arrangement of in-center hemodialysis is conducive to patients forming a relationship and a social network. We examined how seating in the in-center hemodialysis clinic affected patients forming relationships, whether patients formed relationships with others who have similar transplant behaviors (homophily), and whether these relationships influenced patients (social contagion) to request a living donation from family and friends outside of the clinic.

Methods: In this 30-month, prospective cohort study, we observed the relationships of 46 patients on hemodialysis in a hemodialysis clinic.

Making a family decision to donate the brain for genomic research: lessons from the genotype-tissue expression project (GTEx).

This study sheds light on the attitudes and circumstances that influence decisions by families to donate the brain of a deceased family member for research. This study, a part of the Genotype-Tissue Expression (GTEx) project, interviewed families of patients who had authorized organ and/or tissue donation for transplantation. A total of 384 family decision makers (FDMs) who decided to donate organs and/or tissues for transplantation were also asked to donate to GTEx.

Does Sex, Race, and the Size of a Kidney Transplant Candidate's Social Network Affect the Number of Living Donor Requests? A Multicenter Social Network Analysis of Patients on the Kidney Transplant Waitlist.

Background: A kidney transplant candidate's social network serves as a pool of potential living donors. Sex and racial differences in network size, network strength, and living donor requests may contribute to disparities in living donor kidney transplantation.

Methods: In this multicenter cross-sectional study, we performed an egocentric network analysis via a telephone survey of 132 waitlisted candidates (53% female and 69% Black) to identify demographic and network factors associated with requesting living kidney donations.

Vascularized composite allotransplantation: Knowledge and attitudes of a national sample of organ procurement organization professionals.

With the emergence of vascularized composite allografts (VCAs) for transplantation, donation professionals' ability to obtain authorization for these anatomical gifts has become paramount for its continued practice. Our national study examines the experience of organ procurement organization (OPO) professionals responsible for presenting the opportunity to donate VCAs to families of deceased donor-eligible patients. Semi-structured telephone interviews conducted with 157 OPO staff assessed experience with VCA discussions, VCA knowledge, and comfort, confidence, and feeling prepared with discussions about different VCA types.

Using Online Communication Skills Training to Increase Organ Donation Authorization.

Introduction: Family denial of organ donation from deceased donor-eligible patients is a major contributor to the deficit of transplantable organs in the United States.

Research Question: Does an evidence-based communication intervention improve deceased organ donor authorization rates from family decision-makers?

Design: This implementation and dissemination study used Communicating Effectively about Donation on Organ Procurement Organization professionals responsible for discussing donation and obtaining authorization from family decision-makers. A 14-month, nationwide social marketing campaign generated a sample of 682 requesters, yielding a final analyzable sample of 253 participants.

A Comparison of the Content and Quality of Organ Donation Discussions with African American Families Who Authorize and Refuse Donation.

Background: This study compares the experiences of African American (AA) families who authorized organ donation with those who refused.

Methods: Large administrative datasets were obtained from 9 partnering Organ Procurement Organizations (OPO). Initial analyses used these data to assess authorization among African American families (n = 1651).

Pre-transplant evaluation completion for Black/African American renal patients: Two theoretical frameworks.

Objective: Black/African Americans (B/AA) are less likely to complete the pre-transplant evaluation for kidney transplantation despite higher prevalence rates of end-stage renal disease (ESRD). To better understand the barriers and motivators to completing the evaluation process, two qualitative studies were conducted to categorize and elucidate the relationships between these factors.

Methods: In Phase I, semi-structured interviews were conducted with a stratified purposeful sample of transplant professionals (N = 23).

Family First: Asian Americans' Attitudes and Behaviors Toward Deceased Organ Donation.

Asian Americans have substantial transplantation needs but have the lowest rates of organ donation in the USA. As the shortage of transplantable organs persists, the rate of deceased donation by Asian Americans has not kept pace with that of the general population. This report is a qualitative study of organ donation-related attitudes and beliefs of three Asian ethnic groups located in the greater Philadelphia metropolitan area: Chinese, Filipino, and Vietnamese Americans.

Responsiveness and adaptability in community engaged biobanking research: experiences from a Hispanic community.

The success of biobanking research relies on the willingness of the public to provide biological and sociological information, donate tissue samples, and complete psychosocial questionnaires. Medical advances made through biobanking research have limited reach if tissues are not obtained from a diverse sample of individuals. Within, we describe the process of transitioning a small group of Hispanic community members who met regularly into a more formal Hispanic Community Advisory Board (HCAB) for the Genotype-Tissue Expression (GTEx) project.

Consent to a Postmortem Tissue Procurement Study: Distinguishing Family Decision Makers' Knowledge of the Genotype-Tissue Expression Project.

Tissues from postmortem transplantation donors are a viable and productive option for genomic research. This entails obtaining authorization from the family decision makers (FDMs) of deceased donors. This study examined best practices for making such requests within the context of the Genotype-Tissue Expression (GTEx) project, a large national effort to collect reference tissues to establish a genomic biobank and database.

Attitudes of intensive care and emergency physicians in Australia with regard to the organ donation process: A qualitative analysis.

Specialized hospital physicians have direct capacity to impact Australia's sub-optimal organ donation rates because of their responsibility to identify and facilitate donation opportunities. Australian physicians' attitudes toward this responsibility are examined. A total of 12 intensive care unit and three emergency department physicians were interviewed using a constructionist grounded theory and situational analysis approach.

How Inaccurate Metrics Hide the True Potential for Organ Donation in the United States.

Background: There is a discrepancy between the reported increase in donor conversion rates and the number of organs available for transplant.

Methods: Secondary analysis of data obtained from the Scientific Registry of Transplant Recipients from January 2003 through December 2015 was performed. The primary outcomes were the (1) number of brain-dead donors from whom solid organs were recovered and (2) number of the organs transplanted.

Authorization of tissues from deceased patients for genetic research.

Tissues from deceased donors provide important data for genomic research and Organ Procurement Organizations (OPOs) play a significant role. To understand the decisions of families who donated for transplantation and made decisions about donation to the Genotype-Tissue Expression Project (GTEx), we examined donation decisions of family decision makers (FDMs). 413 families were interviewed by telephone.