Ethnicity and Culture in Unrelated Stem Cell Donation

描述(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。由于需要进行造血干细胞移植的患者中只有30%能找到亲属捐赠者，因此在任何给定的时间，大约有7000名患者在国家骨髓捐赠者计划(NMDP)登记中搜索非亲属捐赠者。尽管所有患者都可能很难找到没有血缘关系的HSC捐赠者，但这个问题对于少数族裔患者来说尤其严重，他们拥有较少常见的HLA型，在登记的少数族裔捐赠者中遇到了较高的损失率(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献的少数族裔的经历尚未得到审查。拟议的研究将探讨基于文化的传统/信仰(例如，医疗不信任、宗教信仰)在(A)潜在捐赠者对是否捐献造血干细胞的决定中的作用，以及(B)实际捐献造血干细胞的无关捐赠者的健康经历。这项研究将与NMDP合作进行，NMDP管理着世界上最大的无关HSC捐赠者登记(500万英镑)。从与患者匹配的潜在捐赠者(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是否继续或选择退出登记的决定的关联。从实际捐赠者(n=500)收集的预期数据将使我们能够检查文化变量在捐赠者与健康相关的捐赠经历中的作用。该提案的具体目的是(1)从四个维度(基于文化的、心理社会的、与捐赠相关的和背景特征)描述一组种族不同的潜在和实际的HSC捐赠者，(2)检查这四个维度中的变量与潜在和实际捐赠者之间的关键结果的关联，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。这项研究克服了以前研究的局限性：(A)调查与捐赠有关的实际决定，而不是假想的捐赠意愿；(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。这项研究的结果将与所有HSC捐赠者登记的保留/保护政策相关，与少数族裔患者公平接触无关的HSC捐赠者有关，并与文化问题在器官/组织捐赠中的更广泛作用有关。

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.