Ethnicity and Culture in Unrelated Stem Cell Donation

无关干细胞捐赠中的种族和文化

• 批准号: 7391239
• 负责人: GALEN E. SWITZER
• 金额: $ 48.23万
• 依托单位: UNIVERSITY OF PITTSBURGH AT PITTSBURGH
• 依托单位国家: 美国
• 财政年份: 2006
• 资助国家: 美国
• 起止时间: 2006-04-05 至 2011-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7391239
• 关键词: Accounting; Acute; Age; Anxiety; Attenuated; Belief; Characteristics; Client satisfaction; Collaborations; Data; Dimensions; Disease; Education; Ethnic Origin; Ethnic group; Face; Health; Hematopoietic Stem Cell Transplantation; Hematopoietic stem cells; Life; Marrow; Medical; Mental Depression; Minority; Organ; Outcome; Outcome Study; Patients; Perception; Policies; Process; Rate; Registries; Religious Belief; Research Personnel; Role; Social support; Socioeconomic Status; Stem cells; Telephone Interviews; Testing; Time; Tissue Donations; base; ethnic minority population; experience; programs; prospective; psychosocial; willingness

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.

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% 需要 HSC 移植的患者能够找到相关供体，-7,000 患者正在国家骨髓捐赠计划 (NMDP) 登记处搜索任何不相关的捐赠者 给定时间。尽管所有患者可能都面临着寻找不相关的 HSC 供体的困难，但这个问题是 对于拥有不太常见的 HLA 类型并且遇到 登记的少数族裔捐赠者的流失率较高（~50%）。员工流失率较高的原因 少数群体的潜在捐助者和实际捐助的少数群体的经历尚未得到审查。 拟议的研究将探讨基于文化的传统/信仰的作用（例如，医疗不信任、 宗教信仰）影响 (a) 潜在捐赠者决定是否捐赠 HSC，以及 (b) 健康状况 实际捐赠 HSC 的无关捐赠者的经历。该研究将合作进行 NMDP 管理着世界上最大的无关 HSC 捐赠者登记册（> 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 让我们研究一下文化因素与是否继续或选择退出的决定之间的关系 注册表。从实际捐助者（n = 500）收集的前瞻性数据将使我们能够检查 捐赠者与健康相关的捐赠经历中的文化变量。该提案的具体目标是（1） 从四个维度（文化- 基于、社会心理、捐赠相关和背景特征），（2）检查以下因素之间的关联： 四个维度中的变量以及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 和主要研究成果。本研究通过 (a) 调查实际情况克服了先前研究的局限性 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 个主要种族 (c) 收集有关捐赠的好处和不太积极的方面的数据。由此得出的结论 研究将与所有 HSC 捐赠者登记处的保留/保护政策、公平获取 少数族裔患者与无关的 HSC 捐赠者的关系，以及文化问题在器官/组织捐赠中更广泛的作用。