Non-HLA barriers to unrelated donor stem cell transplantation

Abstract

Summary:A prospective survey involving 544 searches of the US National Marrow Donor Program (NMDP) Registry was conducted to identify reasons why many patients who have apparent HLA-matched donors do not proceed to transplant. Coordinators at NMDP transplant centers, patients and referring physicians were surveyed shortly after the initial search, and follow-up surveys were sent to the coordinators as the search was ongoing. The death of the patient, worsening of the patient's medical condition and length of the search process were the most commonly cited barriers to transplantation. Other times a decision was made not to transplant through the NMDP due to the use of a donor from another source, a preference for chemotherapy or immunotherapy, hesitancy on the part of the transplant physician or patient, or because the patient did not require a transplant. Responses differed between U.S. and international cases. An unrelated donor outside the NMDP was the most common reason cited by international coordinators (46%), whereas the death of the patient was the most common reason among US coordinators (13%). The death of the patient was the second most common reason cited by international coordinators at 9%. Financial problems were listed by 41% of US coordinators as a potential barrier at the time of initial search, but only 5% indicated this as an actual barrier on a follow-up survey. Finances were cited as the most important reason 3% of the time overall, and 6% for African Americans and Asian/Pacific Islanders. Bone Marrow Transplantation (2001) 27, 581-587. Keywords: barriers; survey; unrelated; registry; search The use of unrelated volunteer donors has become an accepted form of treatment for patients in need of a stem cell transplant who lack a suitably matched sibling donor. [1][2][3] The US National Marrow Donor Program (NMDP) maintains a registry of volunteer unrelated donors for such patients. [4][5][6][7] While the annual number of transplants facilitated by the NMDP has increased from 285 in 1990 to 1395 Historically, the lack of an HLA-matched sibling or unrelated volunteer has been perceived as the largest barrier to stem cell transplantation. Efforts have therefore focused on recruiting and HLA typing large numbers of volunteers to increase the likelihood of identifying a suitable donor. These efforts have, in large part, been very successful, resulting in a registry of over 4 million volunteer donors. This, in turn, has increased the percentage of patients with identified potential HLA-A, B, DR serologically matched volunteers on the initial search from 32% in 1990, to 85% in 1999.Previous studies have addressed the likelihood of finding an HLA match and the attrition rates of volunteer unrelated donors. 8,9 The low percentage of searches progressing to transplant through the NMDP, however, suggests that the lack of an available HLA-matched donor may not be the only factor. In this study we focus on other barriers to transplantation.It is unclear how many patients find donors from other sources, choos...

Criteria for initiation and evaluation of minority donor programs and application to the example of donors of Turkish descent in Germany

“…These factors might also depend on the patient's ethnic background. 16 Such difficulties are probably the main reason for the fact that, to date, no quantitative study results confirm reports from German search coordinators regarding lower probabilities of successful donor searches for Turkish patients.…”

Untitled

“…In numerous countries including Turkey, the main barriers to stem cell donation are social, economic, and cultural factors. 8,16,18,19,[23][24][25] In the present study, > 60% medical students indicated that media affected their willingness to donate stem cells (Table 4). To date, media such as television, radio, and newspapers have been the primary sources of information about organ donation and transplantation 14 Media reports may positively affect public attitudes about HSCT and donation in Turkey.…”

Giving Blood and Enrolling on the Stem Cell Donor Registry: Ranking of Obstacles and Motives in Switzerland

“…Previous studies identify several factors which are associated with blood donation or the intention to give blood [2,3,4,5,6,7,8,9,10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29,30,31,32,33,34,35,36,37,38] as well as factors that are associated with enrollment on the blood stem cell registry or the intention to do so [37,39,40,41,42,43,44,45,46,47,48,49,50,51,52]. Based on these studies, we selected 10 factors that potentially encourage individuals to enroll on the blood stem cell registry (table 2) and 11 factors that potentially prevent individuals to enroll on the registry (table 3).…”