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疾病的首选治疗方法。因为只有30%需要HSC移植的患者可以找到相关的供体，大约7000名患者在任何时候都在国家骨髓捐赠计划（NMDP）登记处寻找无关的供体。尽管所有患者都可能难以找到不相关的HSC供体，但这一问题对于具有较少常见HLA类型的少数民族患者尤其严重，并且在登记的少数民族供体中遇到较高的流失率（约50%）。少数族裔潜在捐赠者的流失率较高的原因以及实际捐赠的少数族裔的经历尚未得到研究。拟议的研究将检查基于文化的传统/信仰（例如，医疗不信任，宗教信仰）在(a)潜在捐赠者决定是否捐献造血干细胞和(b)实际捐献造血干细胞的非亲属捐赠者的健康经历中的作用。该研究将与NMDP合作进行，NMDP管理着世界上最大的无血缘关系的HSC捐赠者登记册（150万）。从匹配患者的潜在捐赠者（n= 2400）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决定是否继续或选择退出注册的关联。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健康相关捐赠经历中的作用。该提案的具体目标是：(1)在四个维度（基于文化、社会心理、捐赠相关和背景特征）上描述一组不同种族的潜在和实际HSC捐赠者，(2)检查这四个维度中变量与潜在和实际捐赠者之间关键结果的关联，以及(3)调查基于文化的特征在多大程度上解释了所观察到的种族和关键研究结果之间的关系。本研究克服了以往研究的局限性，(a)调查了与捐赠相关的实际决定，而不是假设的捐赠意愿，(b)包括了美国所有5个主要种族，(c)收集了捐赠的好处和不太积极方面的数据。本研究的结果将与所有HSC供体登记的保留/保护政策，少数民族患者与无关HSC供体的公平获取以及器官/组织捐赠中文化问题的更广泛作用相关。

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.