Ethnicity and Culture in Unrelated Stem Cell Donation

描述（由申请人提供）：造血干细胞（HSC）移植是多种危及生命的疾病的首选治疗方法。由于只有30%的患者需要造血干细胞移植可以找到相关的供体，大约7,000名患者正在搜索国家骨髓捐献者计划（NMDP）登记处在任何给定的时间无关的供体。尽管所有患者可能都难以找到无关的HSC供体，但对于少数民族患者来说，这个问题尤其严重，这些患者具有不太常见的HLA类型，并且在登记的少数民族供体中遇到较高的损耗率（约50%）。少数群体潜在捐助者流失率较高的原因以及实际捐助的少数群体的经历尚未得到研究。拟议的研究将审查基于文化的传统/信仰的作用（例如，医学上的不信任、宗教信仰）在（a）潜在捐献者是否捐献HSC的决定和（B）实际捐献HSC的无关捐献者的健康经历中的作用。这项研究将与NMDP合作进行，NMDP管理着世界上最大的非亲缘HSC供体登记处（> 500万）。从与患者匹配的潜在捐赠者（n= 2，400）收集的横断面电话访谈数据将使我们能够检查文化因素与是否继续或选择退出登记的决定之间的关联。从实际捐赠者（n=500）收集的前瞻性数据将使我们能够检查文化变量在捐赠者的健康相关捐赠经验中的作用。该提案的具体目标是（1）沿着沿着四个维度描述一组种族多样的潜在和实际HSC供体（基于文化的、心理社会的、捐赠相关的和背景特征），（2）检查潜在和实际捐赠者中四个维度中的变量与关键结果的关联，以及（3）调查基于文化的特征在多大程度上解释了种族和关键研究结果之间观察到的关系。这项研究克服了以往研究的局限性，（a）调查实际的捐赠相关的决定，而不是假设的捐赠意愿，（B）包括所有5个主要的美国种族群体，（c）收集数据的好处和捐赠的积极方面。这项研究的结果将与所有HSC供体登记处的保留/保护政策，少数患者对无关HSC供体的公平访问以及器官/组织捐赠中文化问题的更广泛作用有关。

DESCRIPTION (provided by applicant): Hematopoietic stem cell (HSC) transplantation is a preferred treatment for a variety of life-threatening diseases. Because only 30% of patients needing an HSC transplant can find a related donor, approximately 7,000 patients are searching the National Marrow Donor Program (NMDP) registry for an unrelated donor at any given time. Although all patients may face difficulty finding an unrelated HSC donor, this problem is particularly acute for ethnic minority patients who possess less common HLA types and who encounter higher attrition rates (about 50%) among registered minority donors. The reasons for higher attrition rates among minority potential donors and the experiences of minorities who actually donate have not been examined. The proposed study will examine the role of culturally-based traditions/beliefs (e.g., medical mistrust, religious beliefs) in (a) potential donors' decisions of whether or not to donate HSCs, and (b) the health experiences of unrelated donors who actually donate HSCs. The study will be conducted in collaboration with the NMDP which manages the largest registry of unrelated HSC donors in the world (> 5 million). Cross-sectional telephone interview data gathered from potential donors who match a patient (n=2,400) will allow us to examine the association of cultural factors with the decision of whether to continue or opt-out of the registry. Prospective data gathered from actual donors (n=500) will allow us to examine the role of cultural variables in donors' health-related donation experiences. The specific aims of the proposal are to (1) describe a group of ethnically diverse potential and actual HSC donors along four dimensions (culturally- based, psychosocial, donation-related, and background characteristics), (2) examine the association of variables in the four dimensions with key outcomes among potential and actual donors, and (3) investigate the extent to which culturally-based characteristics account for the observed relationship between ethnicity and key study outcomes. This study overcomes limitations of previous studies by (a) investigating actual donation-related decisions rather than hypothetical willingness to donate, (b) including all 5 major U.S. ethnic groups, and (c) gathering data on the benefits and the less positive aspects of donation. Findings from this study will be relevant to retention/protection policies for all HSC donor registries, to the equitable access of minority patients to unrelated HSC donors, and to the broader role of cultural issues in organ/tissue donation.