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. The overarching goal of Communicating Effectively about Donation for Vascularized Composite Allotransplantation (CEaD-VCA) is to increase the number of VCA authorizations and to improve the socioemotional outcomes of FDMs. METHODS: We developed CEaD-VCA, an online, on-demand training program based on the previously tested, evidenced-based communication skills training program designed to train DPs to have conversations about solid organ donation. The training was modified utilizing data from a national telephone survey with DPs and results of 6 focus groups conducted with members of the general public. The survey and focus groups assessed knowledge, attitudes, and barriers to VCA donation. The training was shaped by a partnership with a leading industry partner, the Gift of Life Institute.™ RESULTS: Using the results as a guide, the existing CEaD training program, consisting of interactive eLearning modules, was adapted to include technical information about VCA, foundational communication skills, and two interactive example VCA donation request scenarios to facilitate active learning. Forty-two DPs from two partner Organ Procurement Organizations (OPOs) participated in the beta test of CEaD-VCA. Pre- and post-test surveys assessed the impact of the training. CONCLUSIONS: The training was scored highly by DPs in effectiveness and ease of use. This project created a standardized, accessible, and comprehensive training for DPs to communicate about VCA donation. CEaD-VCA is an example of how to develop a communication skills training for difficult conversations utilizing input from stakeholders, guided by communication theory. It also demonstrates how gaps in communication skills during medical education can be filled utilizing advanced online Learning Management Systems. The training specifically addresses new CMS rules concerning OPO performance metrics.

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. In collaboration with local AA organizations and representatives and national partners, we developed a culturally and linguistically tailored video using a family appeal to promote donor designation among AAs. The video was distributed on social media platforms in two stages from February 17 to September 17, 2021 and tracked Reaches, Impressions, Views, and Engagements as part of a larger evaluation. The results revealed higher social media activities and engagements on Facebook than on Instagram with and without paid advertisements, although the paid approach yielded 5 to 16 times higher viewer engagement. Over six months, the video reached 36,845 AAs and gained 53,308 Impressions, 20,139 Views, 2,455 Engagements, and 232 visits to the organ donation registration page. The findings indicated Facebook and CBCT approaches as effective communication strategies to potentially raise AAs' organ donation awareness, especially among AA females over 45 years of age. Implications and limitations are discussed.

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. Of these, 297 families were asked to donate their loved one's whole brain and 87 families responded to a hypothetical request for brain donation. The decision to donate the brain to GTEx, actually or hypothetically, was the major outcome measure. The majority of the FDMs would choose to donate the brain, 78%. Unwillingness to donate the brain was associated with four attitudes: (1) the FDM unwillingness to donate their own tissues for research (OR 1.91, 95% CI .67 to 2.96; p = .05), (2) concern with potential for-profit use of tissues (OR 2.12, 95% CI 1.2 to 3.7; p = .008), (3) reported squeamishness about tissue donation (OR 1.34, 95% CI 1.1 to 1.7; p = .006), and (4) belief that FDMs should have a say in how the donated tissues are used (OR 1.36, 95% CI 1.13 to 1.5; p = .01). Organ and tissue donors may present a plenteous source of brains for research. Family concerns about tissue use and collection should be addressed by requesters.

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. Standard procedures were used to code and analyze the qualitative data and summarize the quantitative data. Most respondents (70.1%) never held a VCA donation discussion, but those with experience reported overall low levels of knowledge, comfort, and confidence talking with families about VCA. Although 44.4% of the sample had VCA-related training, many felt unprepared, with most (75.0%) stating the training was insufficient. Participants without experience indicated even lower ratings of the aforementioned constructs. Findings support extant work demonstrating that no standardized procedures exist for VCA donation discussions; however, donation professionals are willing to adopt new VCA-related skills. This report concludes that sustained and content-specific training will elevate donation professionals' ability to augment the supply of VCAs available for transplantation.

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. The OPO staff who made the transplant and research requests completed self-administered surveys; a total of 309 matching surveys from 99 OPO staff were obtained. 76.8% of families donated to the GTEx project. Logistic regression analysis found that FDM consent to GTEx donation was associated with endorsement of policies to promote biobanking (OR = 1.35), positive attitudes about medical research (OR = 1.1), lack of concern regarding a breach of confidentiality (OR = 1.54), comfort with tissue donation (OR = 1.24), and prior authorization to solid organ donation (OR = 3.17). OPO staff characteristics associated with GTEx donation included being female (OR = 3.57), White (OR = 4.97), comfort with hospital staff role in donation (OR = 1.61), and number of topics discussed with families (OR = 57.9). Donor type, FDM attitudes, OPO staff sociodemographics, OPO comfort with the GTEx authorization process, and intensity of discussing research-specific issues were significantly associated with GTEx donation decisions.

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. Descriptive statistics and growth plots were used to examine the trajectory of organ donation, recovery, and transplantation outcomes over the 11-year period. RESULTS: From 2003 to 2006, the number of brain-dead donors increased from 6187 to 7375, remaining relatively stable at approximately 7200 thereafter. The average eligible deaths per organ procurement organization dropped from 182.7 (standard deviation [SD]: 131.3) in 2003 to 149.3 (SD: 111.4) in 2015. This suggests a total of 12 493 unrealized potential donors (2006-2015). CONCLUSIONS: Since 2006, a steady decline in the number of donor-eligible deaths was reported. In 2003, the reported eligible deaths was 11 326. This number peaked in 2004 at 11 346, tumbling to 9781 eligible donors in 2015, despite a 9% increase in the US population. From 2006 to 2015, the data indicate an artificial depression and underestimation of the true potential of brain-dead donors in the United States of conservatively 12 493 donors or 39 728 missing organs. New metrics providing objective but verifiable counts of the donor pool are needed.

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

Introduction: 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. Methods/Approach: Semi-structured interviews and focus groups with a nominal group technique were used to generate priority scores. Transplant professionals (N = 23) were recruited from 9 transplant centers in the Mid-Atlantic, Mid-Western, and Southeastern parts of the United States. Black or African American identifying renal patients (N = 30) diagnosed with end-stage kidney disease were recruited from 1 transplant center in the Mid-Atlantic region. Findings: Priority scores were created to assess the quantitative data of participant rankings of top barriers and motivators. The most significant barriers identified by both patients and transplant professionals comprised financial constraints, insurance issues, difficulty navigating the healthcare system, transportation difficulties, and multiple health problems. Facilitators consisted of family/social support, transplant education, patient navigators, comprehensive insurance, and physician repertoire and investment. A qualitative description of the ranked factors resulted in themes classified as intrapersonal, health, socioeconomic, transplant-specific healthcare, and general healthcare. Conclusion: These findings provided vital information to transplant centers nationwide about assessing the influences of renal transplant evaluation completion. Achieving equity in access to transplantation for Black or African American renal patients requires multilayered approaches.

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. The instrument was deployed online, and quota sampling based on the 2017 American Community Survey was used to achieve a sample representative (N = 899) of the Asian American population. Bivariate tests using logistic regression and the chi-square test of independence were performed. Over half (58.1%) of respondents were willing to be organ donors. A majority (81.8%) expressed a willingness to donate a family member's organs, but enthusiasm depended on the family member's donor wishes. Only 9.5% of respondents indicated that the decision to donate their organs was theirs alone to make; the remainder would involve at least one other family member. Other key sociodemographic associations were found. This study demonstrates both the diversity of Asian Americans but also the centrality of the family's role in making decisions about organ donation. Practice and research considerations for the field are also presented.

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. Study Design: A cross-sectional interviewer-administered hemodialysis patient social network survey. Setting & Participants: Prevalent hemodialysis patients in 2 facilities. Predictors: Network size and constraint, a donation from a peripheral network member. Outcomes: Number of living donor offers, accepting an offer. Analytical Approach: We performed egocentric network analyses for all participants. Poisson regression models evaluated associations between network measures and number of offers. Logistic regression models determined the associations between network factors and accepting a donation offer. Results: The mean age of the 106 participants was 60 years. Forty-five percent were female, and 75% self-identified as Black. Fifty-two percent of participants received at least one living donor offer (range 1-6); 42% of the offers were from peripheral members. Participants with larger networks received more offers (incident rate ratio [IRR], 1.26; 95% CI, 1.12-1.42; P = 0.001), including networks with more peripheral members (constraint, IRR, 0.97; 95% CI, 0.96-0.98; P < 0.001). Participants who received a peripheral member offer had 3.6 times greater odds of accepting an offer (OR, 3.56; 95% CI, 1.15-10.8; P = 0.02) than those who did not receive a peripheral member offer. Limitations: A small sample of only hemodialysis patients. Conclusions: Most participants received at least one living donor offer, often from peripheral network members. Future living donor interventions should focus on both core and peripheral network members.

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. Reconstructive plastic surgical procedures are viable treatments options for many patients who have experienced the spectrum of traumatic injuries. The goal of these procedures is to restore physical functioning and reduce the psychosocial burden of living with an appearance that may be viewed negatively by the patient or by others. Even after receipt of reconstructive procedures, many patients are left with residual disfigurement. In some, disability and disfigurement may be so profound that individuals are candidates for vascularized composite allotransplantation (VCA) procedures, i.e., the transplantation of a vascularized human body part containing multiple tissue types (skin, muscle, bone, nerves, and blood vessels) as an anatomical and/or structural unit. This narrative review paper summarizes the literature on the psychosocial burden experienced by those who have visible disfigurement. While many of these individuals experience stigma and discrimination, relatively few studies have employed a stigma framework to understand the psychosocial sequelea. This paper briefly addresses this framework. Last, particular focus is given to the psychosocial issues of individuals with particularly severe injuries who are potential candidates for VCA procedures.

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. Methods: We conducted six focus groups with 53 members of the general public, which were audio-recorded for accuracy and transcribed. Before each session, participants completed a brief survey assessing donation-related knowledge, attitudes, and beliefs. Analysis of qualitative data entailed the constant comparison method in the development and application of a schema for thematic coding. Descriptive statistics and Spearman's rank coefficient were used in the analysis of the quantitative data. Results: Respondents were most knowledgeable about solid organ donation and least knowledgeable about vascularized composite allograft donation. Six major themes emerged: (1) strong initial reactions toward vascularized composite allografts, (2) limited knowledge of and reservations about vascularized composite allografts, (3) risk versus reward in receiving a vascularized composite allograft, (4) information needed to authorize vascularized composite allograft donation, (5) attitudes toward donation, and (6) mistrust of the organ donation system. Conclusion: The general public has low levels of knowledge and high levels of hesitation about vascularized composite allograft donation and transplantation. Education campaigns to familiarize the general public with vascularized composite allografts and specialized training for donation professionals to support informed family decision-making about vascularized composite allograft donation may address these issues.

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

Introduction: 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. Research Questions: We tested the effectiveness of the eLearning program in improving donor professionals' knowledge, preparedness, and confidence leading discussions with families. Design: Donor professionals who primarily obtain family authorization for solid organ and tissue donation were recruited from 2 regional Organ Procurement Organizations. The training was evaluated using a nonrandomized pre-post design. Participants completed an online survey with items assessing their knowledge, preparedness, and confidence for donation discussions. Pre- and post-training responses were compared using paired sample t-tests. Results: The sample included 42 donor professionals. The majority (71.4%) had at least 3 years of work experience, and over half (52.4%) had no experience discussing VCA donation with families. Post-training, significant increases in mean knowledge scores (6.4 pre to 7.0 post, P < 0.01) and mean self-reported preparation (6.6 pre to 7.9 post, P < 0.0001) were observed. There were significant increases in mean confidence scores for discussing face (6.2 pre to 7.9 post, P < 0.0001) and hand (6.2 pre to 8.0 post, P < 0.0001) transplants. Conclusion: The CEaD-VCA program was effective in increasing donor professionals' knowledge, preparation, and confidence when discussing donation, and holds potential for improving donor professional communication during donation discussions.

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. Repeated participant surveys assessed in-center transplant discussions and living-donor requests. A separable temporal exponential random graph model estimated how seating, demographics, in-center transplant discussions, and living-donor requests affected relationship formation via sociality and homophily. We examined whether donation requests spread via social contagion using a susceptibility-infected model. Results: For every seat apart, the odds of participants forming a relationship decreased (OR, 0.74; 95% CI, 0.61 to 0.90; P=0.002). Those who requested a living donation tended to form relationships more than those who did not (sociality, OR, 1.6; 95% CI, 1.02 to 2.6; P=0.04). Participants who discussed transplantation in the center were more likely to form a relationship with another participant who discussed transplantation than with someone who did not discuss transplantation (homophily, OR, 1.9; 95% CI, 1.03 to 3.5; P=0.04). Five of the 36 susceptible participants made a request after forming a relationship with another patient. Conclusions: Participants formed relationships with those they sat next to and had similar transplant behaviors. The observed increase in in-center transplant discussions and living-donation requests by the members of the hemodialysis-clinic social network was not because of social contagion. Instead, participants who requested a living donation were more social, formed more relationships within the clinic, and discussed transplantation with each other as a function of health-behavior homophily.

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). Subsequent analyses were performed using a subsample of interview data of AA family decision makers (n = 276). Initial bivariate analyses tested differences in study variables by authorization status (donor/nondonor). Two separate multilevel logistic regressions examined associations between independent variables and family authorization. RESULTS: Analyses of the administrative datasets found that refusal was more likely when the patient was older, female, a DCD case, and not referred in a timely manner; refusal was less likely when families initiated donation conversations. Interview data revealed that families who refused donation were less likely to respond favorably to initial donation requests and reported less satisfaction with the overall approach, amount of time with OPO staff, and how questions were handled. Refusing families were also more likely to feel pressured, had less comprehensive donation discussions, and rated the OPO requesters' communication skills lower. No significant differences in organ donation attitudes were found between families who authorized donation and those refusing to donate. CONCLUSIONS: The study suggests that AA families making decisions about organ donation would benefit from culturally appropriate discussions. TRIAL REGISTRATION: Clinical Trial Notation: NCT02138227.

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). Focus groups were conducted during Phase II with a purposeful sample of B/AA patients (N = 30). RESULTS: Thematic analyses assessed using grounded theory revealed a multitude of factors at individual and systemic levels, including health and informational/educational-related factors. Two comprehensive theoretical frameworks, a socio-ecological model of barriers and a model of motivators are presented. Medical mistrust is an example of a community factor identified as impeding completion rates. Systemic motivators included compressed time for testing and fewer intervals between doctor's appointments. CONCLUSIONS: This study offers a structure for understanding impediments to and facilitators of pre-transplant evaluation completion as seen through the eyes of both B/AA ESRD patients seeking transplant and the providers who work with them. PRACTICE IMPLICATIONS: Recommendations for intervention and systemic changes to narrow health disparities are discussed.

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. A major theme emerged, related to physicians' conflicts of interest in maintaining patients'/next-of-kin's best interests and a sense of duty-of-care in this context. Two sub-themes related to this main theme were identified as follows: (1) discussions about organ donation and who is best to carry these out and (2) determining whether organ donation is part of end-of-life care; including the avoidance of non-therapeutic ventilation; and some reluctance to follow clinical triggers in the emergency department. Overall, participants indicated strong support for organ donation but would not consider it part of end-of-life care, representing a major obstacle to the support of potential donation opportunities. Findings have implications for physician education and training. Continued efforts are needed to integrate the potential for organ donation into end-of-life care within intensive care units and emergency departments.

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. Guided by a Community Advisory Board representing these groups, we conducted 9 focus groups with a total of 64 participants and subsequent thematic analyses. Six major themes emerged: (1) positive views about organ donation, (2) previous exposure to organ donation, (3) primacy of the family in decision making, (4) mistrust of the healthcare and donation systems, (5) religious and cultural beliefs concerning the body, and (6) isolation from mainstream American society. Although participants expressed commonalities and beliefs in line with other American racial and ethnic groups, we also identified unique beliefs, such as familial influence, religious and cultural concerns regarding body wholeness and the dead, and underlying reasons for medical mistrust, such as a belief in a black market. The study's findings challenge the dominant educational and awareness campaigns about organ donation decision making that focus on individual autonomy and overlook the need for incorporating the specific content and message delivery needs of Asian Americans. This study is the first to explore attitudes and knowledge about posthumous organ donation among US Asian American populations in at least a decade.

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. Serving as their own controls, participants spent the first 3 months in a preintervention period, completed the web-based intervention, and progressed to a 3-month postintervention period. Participants completed brief online weekly surveys to assess the intervention's impact on their communication skills. RESULTS: Authorization rates did not improve overall between the pre- and postintervention periods. A differential effect of the intervention on 3 distinct groups of requesters was found: one group exhibited high and stable authorization rates pre-post (78%-74%); a second group had low initial authorization rates that increased after exposure to the intervention (46%-73%); the third had low and variable rates of authorization that failed to improve after the intervention (45%-36%). CONCLUSION: This study underscores the value of evidence-based communication training. Training targeted to requesters' skill levels is needed to realize overall improvements in individual performance, the quality of donation discussions, and rates of family decision-maker authorization to solid organ donation.

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. RESULTS: Female participants made requests to more network members than male participants: incidence rate ratio (IRR) 1.95, 95% confidence interval (CI) [1.24-3.06], P < 0.01. Black participants tended to make more requests than whites (IRR 1.65, 95% CI [0.99-2.73], P = 0.05). The number of requests increased with the size of the network (IRR 1.09, 95% CI [1.02-1.16], P = 0.01); however, network size did not differ by sex or race. Network members who provided greater instrumental support to the candidates were most likely to receive a request: odds ratio 1.39, 95% CI [1.08-1.78], P = 0.01. CONCLUSIONS: Transplant candidates' networks vary in size and in the number of requests made to the members. Previously observed racial and sex disparities in living donor kidney transplantation do not appear to be related to network size or to living donation requests, but rather to the network members themselves. Future living donor interventions should focus on the network members and be tailored to their relationship with the candidate.

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. The sole purpose of the HCAB was to provide input and feedback on GTEx and, specifically, how researchers can best address the concerns of the Hispanic community related to tissue donation. This initial purpose was adapted to be responsive to the HCAB's request to include educating others in the Hispanic community who were not a part of the advisory board about genomic biobanking. While HCAB members' knowledge of biobanking was limited, a strong need for culturally tailored information about the impact of biobanking medical discoveries and their potential benefit to the Hispanic community was expressed. The HCAB's feedback guided revisions to GTEx study documents to specifically address concerns about language use, clarity, and context including the need for consent forms to address cultural concerns and fears. HCAB members also collaborated on the development of a walk-through exhibition which provided a visual, narrative-based explanation of GTEx and the process of tissue donation for research and biobanking purposes. The HCAB demonstrated the value of including community participation in scientific research projects, for both scientists and lay communities, and underscored the importance of developing community engagement approaches that are adaptable and responsive to community needs. Our experience with the HCAB serves as exemplar for a unique paradigm of community inclusiveness and education in research.