Ethnicity and Culture in Unrelated Stem Cell Donation

造血干细胞（HSC）移植是多种危及生命的首选治疗方法 疾病因为只有30%的需要HSC移植的患者可以找到相关的供体， 患者在任何时候都在国家骨髓捐献者计划（NMDP）登记处寻找无关的捐献者。 给你时间尽管所有患者都可能难以找到无关的HSC供体，但这一问题是 对于少数民族患者尤其严重，这些患者具有不太常见的HLA类型， 登记的少数族裔献血者的流失率较高（约50%）。妇女自然减员率较高的原因 少数群体的潜在捐助者和实际捐助的少数群体的经验没有得到审查。 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）潜在捐赠者是否捐赠HSC的决定，以及（B）健康 实际上捐赠HSC的无关捐赠者的经验。这项研究将与 NMDP管理着世界上最大的非亲缘HSC捐献者登记册（> 500万）。 从与患者匹配的潜在供体（n= 2，400）收集的横断面电话访谈数据将 允许我们研究文化因素与是否继续或选择退出的决定之间的联系。 登记处。从实际供体（n=500）收集的前瞻性数据将使我们能够检查 捐赠者健康相关捐赠经历中的文化变量。该提案的具体目标是：（1） 描述一组种族多样的潜在和实际HSC供体沿着四个维度（文化- 基于，心理社会，捐赠相关，和背景特征），（2）检查协会 四个维度中的变量，潜在和实际捐助者之间的关键结果，以及（3）调查 基于文化的特征在多大程度上解释了观察到的种族之间的关系 关键研究成果。本研究克服了以往研究的局限性，通过（a）调查实际 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 （c）收集关于捐赠的好处和不太积极的方面的数据。时发现的问题 研究将与所有HSC供体登记的保留/保护政策相关， 少数患者与无关的HSC供体，以及器官/组织捐赠中文化问题的更广泛作用。

Hematopoietic stem cell (HSC) transplantation is a preferred treatment for a variety of life-threatening diseases. Because only 30% of patients needing an HSCtransplant can find a related donor, -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 (~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 gatheredfrom 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.