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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.

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.

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.