Ethnicity and Culture in Unrelated Stem Cell Donation

造血干细胞(HSC)移植是治疗各种危及生命的 疾病。因为只有30%的需要造血干细胞移植的患者能找到亲属捐赠者，-7000 患者正在国家骨髓捐赠者计划(NMDP)登记中搜索与患者无关的捐赠者 给你点时间。尽管所有患者都可能很难找到无关的造血干细胞捐赠者，但这个问题是 对于少数族裔患者来说，尤其是那些拥有较少常见的HLA型和遇到 在登记的少数族裔捐赠者中，流失率较高(~50%)。以下是流失率较高的原因 少数群体潜在捐赠者和实际捐献的少数群体的经历没有得到审查。 拟议的研究将审查基于文化的传统/信仰的作用(例如，医疗不信任， 宗教信仰)在(A)潜在捐赠者对是否捐献造血干细胞的决定，以及(B)健康 实际捐献造血干细胞的无关捐赠者的经历。这项研究将在合作中进行 与NMDP合作，NMDP管理着世界上最大的无关HSC捐赠者登记(500万英镑)。 从与患者(n=2400)匹配的潜在捐赠者收集的横断面电话采访数据将 允许我们检查文化因素与是否继续或选择退出的决定的关联 注册表。从实际捐赠者(n=500)收集的预期数据将使我们能够审查 捐赠者健康相关捐赠经历中的文化变量。该提案的具体目的是：(1) 描述一群种族不同的潜在和实际的HSC捐赠者从四个方面(文化上- 基于、心理社会、与捐赠相关的和背景特征)，(2)检查 四个维度中的变量与潜在和实际捐赠者之间的关键结果，以及(3)调查 文化特征在多大程度上解释了观察到的种族之间的关系 和关键的研究成果。这项研究克服了以往研究的局限性，通过(A)调查实际情况 与捐赠相关的决定，而不是假设的捐赠意愿，(B)包括美国所有5个主要民族 (C)收集关于捐赠的好处和不太积极的方面的数据。由此得出的结论 这项研究将涉及所有人类安全理事会捐助者登记册的保留/保护政策、公平获取 少数族裔患者向无关的造血干细胞捐赠者，以及文化问题在器官/组织捐赠中的更广泛作用。

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.