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.

Economic costs of family caregiving for persons with advanced stage cancer: a longitudinal cohort study.

PURPOSE: To form a multifaceted picture of family caregiver economic costs in advanced cancer. METHODS: A multi-site cohort study collected prospective longitudinal data from caregivers of patients with advanced solid tumor cancers. Caregiver survey and out-of-pocket (OOP) receipt data were collected biweekly in-person for up to 24 weeks. Economic cost measures attributed to caregiving were as follows: amount of OOP costs, debt accrual, perceived economic situation, and working for pay. Descriptive analysis illustrates economic outcomes over time. Generalized linear mixed effects models asses the association of objective burden and economic outcomes, controlling for subjective burden and other factors. Objective burden is number of activities and instrumental activities of daily living (ADL/IADL) tasks, all caregiving tasks, and amount of time spent caregiving over 24 h. RESULTS: One hundred ninety-eight caregivers, 41% identifying as Black, were followed for a mean period of 16 weeks. Median 2-week out-of-pocket costs were $111. One-third of caregivers incurred debt to care for the patient and 24% reported being in an adverse economic situation. Whereas 49.5% reported working at study visit 1, 28.6% of caregivers at the last study visit reported working. In adjusted analysis, a higher number of caregiving tasks overall and ADL/IADL tasks specifically were associated with lower out-of-pocket expenses, a lower likelihood of working, and a higher likelihood of incurring debt and reporting an adverse economic situation. CONCLUSIONS: Most caregivers of cancer patients with advanced stage disease experienced direct and indirect economic costs. IMPLICATIONS FOR CANCER SURVIVORS: Results support the need to find solutions to lessen economic costs for caregivers of persons with advanced cancer.

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.

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.

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.

Donor Designation Among Mature Latinas and Lay Health Educators (Promotoras): A Mixed-Methods Study.

BACKGROUND: Despite positive public attitudes toward solid organ donation in the United States, some of the lowest rates of donor designation persist among older adults and Latinx populations. AIMS: To identify barriers and facilitators to organ donation and donor designation among lay health educators (promotoras) and mature Latina (50+ years). METHODS: An explanatory sequential mixed-method design was employed, with telephone surveys followed by focus group interviews, to assess and understand the nuances of organ donation and donor designation knowledge, attitudes, and practices among promotoras and mature Latinas in Chicago (IL), Philadelphia (PA), and San Antonio (TX). Descriptive statistics summarized quantitative survey data; thematic content analysis was performed on qualitative data. RESULTS: Twenty-nine promotoras and 45 mature Latina participated in both the surveys and focus groups (N = 74). Most participants (90%) had limited knowledge of organ donation but reported being "somewhat" or "strongly" in favor of donation (70%); 40.5% were registered donors. Participants lacked knowledge about the registration process and its legal standing and upheld concerns that registered donors would be vulnerable to organ traffickers or targets for murder. Themes emerging from the group interviews revealed additional barriers to designation including distrust of the medical establishment, perceptions of inequities in organ allocation, and family resistance to discussing death. DISCUSSION: Low donor designation rates are primarily driven by concerns about organ trafficking and the fairness of the allocation system, particularly for undocumented immigrants. CONCLUSIONS: The results informed development of a culturally targeted educational and communication skills intervention to increase donor designation in Latinx communities. TRIAL REGISTRATION: ClinicalTrials.gov NCT04007419.

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.

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.

A Culturally Targeted eLearning Module on Organ Donation (Promotoras de Donación): Design and Development.

BACKGROUND: As an overrepresented population on the transplant waitlist, stagnated rates of organ donation registration among Latinxs must be redressed. Promotoras (community health workers), who are effective at advocating and spearheading health promotion efforts in the Latinx community, show promise in their ability to educate about organ donation and donor registration. OBJECTIVE: This study aimed (1) to develop an interactive, evidence-based program to educate promotoras about organ donation, the need for organ donors in the Latinx American community, and ways to register as deceased organ donors and (2) to train promotoras to lead discussions about organ donation and to promote the act of donor registration. METHODS: In partnership with 4 promotoras organizations, the culturally targeted Promotoras de Donación eLearning module was developed based on input from 12 focus groups conducted with Latina women (n=61) and promotoras (n=37). Formative work, existing literature, the Vested Interest Theory, and the Organ Donation Model guided curriculum development. In partnership with the Gift of Life Institute and regional promotoras, the curriculum was designed, filmed, and developed in a visually appealing module interface. The module was beta-tested with promotoras before launch. RESULTS: Promotoras de Donación, available in Spanish with English subtitling, lasts just over an hour. The module comprised 6 sections including various activities and videos, with the curriculum divided into a skills-based communication component and a didactic educational component. Pre- and posttests assessed the module's direct effects on promotoras' organ donation knowledge and attitudes as well as confidence promoting the act of donor registration. CONCLUSIONS: This novel, theoretically and empirically based intervention leveraged the existing network of promotoras to promote the act of donor registration. Future research should assess whether the module helps increase rates of donor registration within Latinx communities and reduce disparities in access to transplantation. TRIAL REGISTRATION: ClinicalTrials.gov NCT04007419; https://www.clinicaltrials.gov/ct2/show/NCT04007419.

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.

Utility and Usability of the Rapid Assessment of Hospital Procurement Barriers in Donation (RAPiD) as a Tool for OPO Hospital Development Staff.

CONTEXT: Few systematic assessment tools are available to organ procurement organizations (OPOs) for evaluating donation climates of hospitals in their donation service areas (DSAs). The Rapid Assessment of hospital Procurement barriers in Donation (RAPiD) was developed for OPO hospital development staff to assess the organ donation climate of hospitals. OBJECTIVE: To implement a national test of the RAPiD to examine its efficacy and usability by OPO hospital development staff. DESIGN: Two-arm randomized design, comparing implementation of RAPiD protocol between qualitatively trained researchers (n = 7) and OPO hospital development staff (n = 24); all evaluators received the same training assessments of high-yield hospitals. SETTING: A total of 77 hospitals in DSAs of 8 OPOs. PARTICIPANTS: A total of 2552 health-care providers (HCPs) in high organ donor potential units. MAIN OUTCOME MEASURES: Twenty-four donation-related attitudes, knowledge, and behaviors. RESULTS: More HCPs interviewed in the autonomous condition were positive toward the concept of organ donation. However, HCPs in the assisted condition were more candid about and critical of the OPO. As for knowledge, fewer HCPs in the autonomous condition reported familiarity with the donation process, need for donors, and generally accepted timely referral criteria. With respect to behaviors, more respondents in the autonomous condition reported frequent or occasional contact with the OPO and routine or occasional referral criteria use. Due to issues of bias, inadequate research experience, conflicts of interest, and ongoing OPO hospital development initiatives, the RAPiD's usability by OPO-based hospital development staff is questionable and not recommended in its current form. A next generation of the RAPiD is described for future consideration.