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Patients with blood-related diseases often cannot identify a matched related donor and must seek donors in unrelated donor registries. These registries face the challenge of ensuring that potential donors are available when contacted. Donor attrition is especially problematic when there is only a single perfectly matched potential donor. One way to improve donor availability might be to present perfectly matched donors (high-priority donors [HPDs]) with more precise information about their match status. This project evaluated the impact of providing such information to HPDs at the National Marrow Donor Program (NMDP)/Be The Match. Objectives were to determine the acceptability of the new messaging to both HPDs and the donor contact representatives (DCRs) who delivered the message, consistency of message delivery, and whether the new messaging was associated with improved donor availability. Mixed methods were used to collect telephone interview data from HPDs, matched samples of non-HPDs, and DCRs. Donor availability data came from NMDP records. Key findings were as follows: (1) the HPD message was acceptable to potential donors and did not seem to produce undue pressure, (2) the message was acceptable to DCRs who became more comfortable and consistent in delivering the message over time, but (3) the new messaging did not significantly increase availability. Despite the lack of evidence for increased availability, there may be ethical benefits and little harm to providing well-matched donors with more information about their degree of matching. Research should examine stronger match status messages and delivery of new messaging to additional highly-matched donor groups.

According to the Standards of the World Marrow Donor Association (WMDA), unrelated stem cell donor registries and donor centers are responsible for compliance of their collection and apheresis centers with these Standards. To ensure high stem cell product quality and high standards for safety and satisfaction of voluntary unrelated stem cell donors, we here present guidelines for audits of collection and apheresis centers that can be used by new and established donor registries, as well as by collection centers in preparation of audits. We define the general requirements and recommendations for collaboration with the collection and apheresis centers and define critical procedures for the collection of the stem cell product, such as information session, medical assessment, product collection, quality controls, product handover for transportation, and donor follow-up. The specific guidelines are accompanied by detailed checklists and forms that can be found in Supplementary Information and may be used during an initial or follow-up on-site or paper-based audit.

There are more than 30 million potential unrelated hematopoietic progenitor cell (HPC) donors listed on international registries, but 30% to 50% are unavailable after matching a patient. In the United States racial/ethnic minorities opt out of donation at higher rates, and a previous study identified factors associated both with attrition and ethnic group membership. Attrition among minorities is also higher in the Anthony Nolan UK registry (35% in white British [WB] and 56% in nonwhite British [NWB]), but it is not clear what factors produce higher attrition in the United Kingdom and whether they are similar to those found in the United States. Three hundred fifty-seven UK potential donors who matched a patient completed a questionnaire. Key factors were compared by donation decision (continue or opt out) and by race/ethnicity (WB versus NWB). The pattern of UK results was compared with that of the previous US study for variables assessed in both studies. Across WB and NWB donors, higher attrition was associated with poorer physical/mental health, greater ambivalence, and more concerns about donation. Donors who opted out also reported less interaction with the registry, and 16% indicated that more interaction with the registry would have changed their decision. Those opting out of the registry and minorities were both more likely to report religious objections to donation and to mistrust the fairness of HPC allocation. The pattern of findings was similar in UK and US samples. Registries should maintain contact with potential donors after recruitment, aiming to educate members about the donation procedure and to address potential misconceptions associated with religious beliefs and HPC allocation.

Background The National Marrow Donor Program (NMDP) has had remarkable success at recruiting potential bone marrow donors and recently has become increasingly focused on the retention of registered volunteers. This study extends the authors' work examining factors associated with attrition from the registry. Its goal was to determine which characteristics from six psychosocial domains were associated with attrition at two key stages leading to donation. Methods Questionnaires were mailed to potential donors after they were contacted as a potential match and had decided whether or not to continue toward donation. Our final sample included 1,727 volunteers who decided to continue with typing at the DR stage and 195 volunteers who decided to continue at the confirmatory typing (CT) stage as well as 179 and 169 individuals, respectively, who declined further participation in the registry at DR and CT stages. Results Bivariate analyses indicated that multiple factors in all six domains (demographics, volunteer-related, general psychosocial, recruitment-related, donation-related, and contact with center staff) were associated with discontinued registry participation. Logistic regression indicated that unique associations were concentrated in volunteer-related, donation-related, and contact with center domains. Conclusions Findings suggested that intrinsic commitment to donation, more realistic expectations, fewer medical concerns, and greater contact with the donor center were all associated with lower attrition. Possible interventions to reduce attrition are discussed.

Large international registries of potential unrelated hematopoietic stem cell (HSC) donors, including the National Marrow Donor program (NMDP), continue to face difficulties finding matched donors for racial/ethnic minorities. One reason, in addition to the generally less common HLA types among minority patients, is the much higher registry attrition rate of racial/ethnic minorities compared with whites. Reasons for the higher attrition among minority potential donors remain unexplained. The goal of our cross-sectional telephone interview study was to generate a diverse sample of potential HSC donors who have preliminarily matched a patient and to identify factors associated with race/ethnicity and with the decision to continue toward potential donation or to opt out of the registry. Multiple culturally related, psychosocial, and donation-related factors were associated both with race/ethnic group membership and attrition from the registry. The most consistent factor associated with opting out of the registry across all race/ethnic groups was ambivalence about donation: doubts and worries, feeling unsure about donation, wishing someone else would donate in one's place. Our findings suggest that universal donor recruitment and management approaches based on reducing donation-related ambivalence and tailored messages and strategies for each of the individual race/ethnic groups are important.

HLA matching is the dominant controllable donor-recipient factor determining the outcome of adult unrelated donor hematopoietic cell transplantation. Beyond HLA, donor selection is often based on donor characteristics such as age, sex, parity, cytomegalovirus (CMV) serostatus, and ABO blood type. The published evidence to suggest these additional factors are important determinants of survival is weak and is sometimes conflicting. Other factors may be more important for optimal donor selection than the traditional non-HLA factors. These include the donor's geographic location, the performance history of the groups managing the donor, a priori knowledge of the donor's willingness/availability, and others. Implementation of tools to expose this additional donor-related information could significantly alter and aid unrelated donor selection practices.

Background.AlthoughtheNationalMarrowDonorProgramhasbeenhighlysuccessfulatrecruitingethnicminorities as potential hematopoietic stem cell donors, there have been no systematic investigations of whether donor characteristics that might be linked to the donation experience vary by ethnicity. Methods. Questionnaires assessing four domains—demographic, volunteer-related, general psychosocial, and donation-related—were mailed to potential donors after they were contacted as a preliminary match for a patient and had agreed to donate. In all, 1,679 potential donors completed and returned a predonation questionnaire. Data from potential donors belonging to five major ethnic groups were analyzed; white, black, Asian/Pacific Islander, Hispanic, and Native American. Results.Bivariate analyses indicated that virtually all factors in the four domains were associated with ethnicity. Direct discriminant function analysis identified three significant functions. The most striking of the three functions indicated that Asian Americans were more highly educated, more ambivalent (reluctant about donation), more concerned (medical, work/family), and more anxious and depressed than all other ethnic groups. Key differences among other ethnic group members were also identified. Conclusions. This study provides the first evidence of ethnic group differences in key predonation variables. Findings suggestthatAsian/PacificIslanderspossessanumberofcharacteristicsthatareknownpsychosocialriskfactorsforless positive postdonation outcomes and that more intensive pre and postdonation contact with this group may be necessary. Strategies for improving future research in this area are discussed.

The National Marrow Donor Program (NMDP) has had remarkable success at recruiting potential bone marrow donors and recently has become increasingly focused on the retention of registered volunteers. This study extends the authors' work examining factors associated with attrition from the registry. Its goal was to determine which characteristics from six psychosocial domains were associated with attrition at two key stages leading to donation.Questionnaires were mailed to potential donors after they were contacted as a potential match and had decided whether or not to continue toward donation. Our final sample included 1,727 volunteers who decided to continue with typing at the DR stage and 195 volunteers who decided to continue at the confirmatory typing (CT) stage as well as 179 and 169 individuals, respectively, who declined further participation in the registry at DR and CT stages.Bivariate analyses indicated that multiple factors in all six domains (demographics, volunteer-related, general psychosocial, recruitment-related, donation-related, and contact with center staff) were associated with discontinued registry participation. Logistic regression indicated that unique associations were concentrated in volunteer-related, donation-related, and contact with center domains.Findings suggested that intrinsic commitment to donation, more realistic expectations, fewer medical concerns, and greater contact with the donor center were all associated with lower attrition. Possible interventions to reduce attrition are discussed.

The National Marrow Donor Program (NMDP) has approximately 5 million registered potential donors and continues to add more than 30,000 new recruits to the registry monthly. However, more than 30% of potential donors are not available or decline to donate at key decision points in the donation process. Although previous researchers have examined the association of individual donor characteristics with attrition from the registry, no published studies have investigated the role of donor center characteristics or features of the donor centers' environment on attrition rates.Donor center coordinators from 72 NMDP centers completed questionnaires that included items regarding donor center location and organization, recruitment strategies, and registry management. Center-specific registry composition data and attrition rates were gathered from the NMDP database.Analyses indicated that higher attrition was found at larger centers that needed more center staff and volunteers to deal with larger workloads and more DR-typing requests. Attrition was also higher among centers located in highly populated, urban environments, with larger minority and less stable populations.The results indicate that the NMDP may need to tailor donor center retention expectations to account for certain unchangeable characteristics (e.g., center size and population stability) and to develop internal strategies to address the unique characteristics of each donor center (e.g., current performance level or improvement needs).

Given the importance of making comparisons regarding quality-of-life issues for end-stage renal disease (ESRD) patients, the research presented here first compares 766 patients who experienced one of the following therapies for at least 1 year: (1) center hemodialysis, (2) continuous ambulatory peritoneal dialysis (CAPD), or (3) successful transplantation (one cohort of patients from the 1970s, a second cohort from 1980 to 1984). Second, since the most recent transplant group was randomized to two alternative immunosuppressive drug regimens, we compared the quality of life of the patients on cyclosporine/prednisone therapy (N = 51) and the patients on a conventional immunosuppressive therapy (antilymphocyte globulin/prednisone/azathioprine; N = 40). Patients had to be age 19 to 56 years and nondiabetic to be included in this research. Data were collected with survey questionnaires containing measures of physical, emotional, and social well-being, vocational rehabilitation, sexual adjustment, and marital and family adjustment. Case mix or background differences were controlled as much as possible using an analysis of covariance (ANCOVA) and comparison of adjusted means. Our results show that the successful transplant patients scored higher than both dialysis groups (P less than 0.05 for nine of 11 measures) on almost all variables, demonstrating a higher quality of life. The effect of a failed transplant on quality of life was also examined. In terms of the recent transplant patients, the cyclosporine group scored consistently higher on all physical, emotional, and social well-being measures (excluding males' vocational rehabilitation), although differences are not always significant.(ABSTRACT TRUNCATED AT 250 WORDS)

The aim of this research is to compare the quality of life after kidney transplantation for patients treated with cyclosporine versus conventional immunosuppressive therapy. This evaluation assumes particular importance given the high cost of cyclosporine, the resistance of the government to cover these costs, and the absence in some series (including this one) of significant differences in patient and kidney survival. This study is based on a randomized, stratified, prospective trial and concentrates on nondiabetic patients from ages 19 to 56 at 1-year posttransplant. Patients on cyclosporine show significant advantages in physical, emotional, and social well-being. Differences for 5 out of 10 indicators of quality of life were significant at the P less than or equal to .05 level. Significant differences are found on health satisfaction, happiness measures, indices of overall life satisfaction and well-being, perceived adjustment of the family, and female (not male) vocational rehabilitation. The fewer number of episodes of rejection and infection are, in part, responsible for these advantages in quality of life for cyclosporine patients.