Hematopoietic Stem Cell Donor Enrollment and Retention in Korean Americans

描述（由申请人提供）：造血干细胞（HSC）移植是一种潜在的治疗选择，越来越多地用于各种血液恶性肿瘤和疾病。将HSC移植到受体患者体内首先需要确定一个合适的人类白细胞抗原（HLA）匹配的供体，一旦确定供体，就需要收集骨髓或外周干细胞。在美国，国家骨髓捐献计划（NMDP）保留了一个接受过初步hla分型的潜在志愿捐献者的注册表。与白人相比，亚洲/太平洋岛民美国人（API）患者在NMDP登记中成功接受不相关的hla匹配的造血干细胞移植的可能性较低。这种差异至少可归因于两个问题。首先，API患者可获得的潜在匹配供体较少，可能是因为API人群中HLA多态性较高。虽然87%的白人患者在NMDP登记处找到了至少一个潜在的匹配供体，但只有75%的API患者能够找到潜在的匹配其次，API组织中的志愿者捐献者从注册表中流失率很高。超过一半（56%）的API潜在献血者初步匹配的患者没有完成完整的医学和实验室测试需要完成HSC采集和捐赠我们建议从一个API社区（韩裔美国人）获得关于参与NMDP注册的定性数据。我们打算确定影响在捐助者登记册登记的最初决定以及随着时间的推移继续参与登记册的因素。为了解决这两个问题，我们将在社区NMDP注册登记后对18-60岁的韩国成年人进行40次基线深度、半结构化定性访谈；这些访谈的一半将在选择注册的参与者中进行，而另一半将在拒绝注册的参与者中进行。随访定性访谈将在基线访谈后的一年进行，参与者中有一半登记在NMDP登记处。访谈主题将包括对可能影响参与新民主党登记的文化信仰、知识和态度的讨论。我们相信这项R03小额拨款提案提供了机会，以确定和探索在国家注册计划中与潜在API造血干细胞供体的登记和保留相关的因素。这些定性数据将用于确定教育计划的目标，以解决亚洲/太平洋岛民社区关于造血干细胞捐赠的具体问题，并增加潜在捐赠者的保留率。最终，我们希望在亚洲/太平洋岛民患者中增加识别hla匹配供体和成功完成造血干细胞移植的可能性。公共卫生：我们相信这项小额拨款提案提供了一个机会，可以在国家登记项目中，诱导识别和探索与潜在的亚洲/太平洋岛民造血干细胞捐赠者的登记和保留相关的因素。我们希望利用这些定性数据来确定教育计划的目标，以解决亚洲/太平洋岛民社区对干细胞捐赠的具体关切，并增加潜在捐赠者的保留率。最终，我们希望增加亚洲/太平洋岛民患者成功进行干细胞移植的可能性。

DESCRIPTION (provided by applicant): Hematopoietic stem cell (HSC) transplantation is a potentially curative therapeutic option increasingly used for a variety of hematologic malignancies and disorders. HSC transplant into a recipient patient first requires the identification of a suitable human leukocyte antigen (HLA)-matched donor, and harvest of bone marrow or peripheral stem cells once a donor is identified. In the United States, the National Marrow Donor Program (NMDP) maintains a registry of potential volunteer donors who have undergone preliminary HLA-typing. Compared to Whites, Asian/Pacific Islander American (API) patients who search the NMDP registry have a lower likelihood of successfully receiving an unrelated, HLA-matched hematopoietic stem cell transplant. This disparity is attributable to at least two issues. First, there are fewer potentially matched donors available to API patients, possibly because of high HLA polymorphism within API populations. While 87% of White patients searching the NMDP registry found at least one potential matching donor, only 75% of API patients were able to find a potential match.6 Second, volunteer donors among API groups have a high rate of attrition from the registry. More than half (56%) of API potential donors preliminarily matched to patients did not complete the full medical and laboratory testing needed to complete HSC harvest and donation.6 We propose to obtain qualitative data from one API community (Korean Americans) regarding participation in the NMDP registry. We intend to identify factors that influence both the initial decision to enroll in the donor registry, as well as the continued participation in the registry over time. To address these two topics, we will conduct 40 baseline in-depth, semi-structured qualitative interviews among Korean adults 18-60 years of age following community NMDP registry enrollment drives; half of these interviews will be conducted among participants who choose to enroll in the registry, while the other half will be conducted among participants who decline to enroll. Follow-up qualitative interviews will be conducted one year after baseline interviews among the half of the participants that enroll in the NMDP registry. Interview topics will include discussion about cultural beliefs, knowledge, and attitudes that may influence participation in the NMDP registry. We believe this R03 Small Grant proposal offers the opportunity to identify and explore the factors associated with enrollment and retention of potential API hematopoietic stem cell donors in a national registry program. These qualitative data will be used to identify targets for an educational program to address the specific concerns in Asian/Pacific Islander communities regarding hematopoietic stem cell donation, and to increase retention among potential donors. Ultimately, we hope to increase the likelihood of identifying HLA-matched donors and successfully completing hematopoietic stem cell transplant among Asian/Pacific Islander patients. to Public Health: We believe this small grant proposal offers the opportunity to inductively identify and explore the factors associated with enrollment and retention of potential Asian/Pacific Islander hematopoietic stem cell donors in a national registry program. We hope to use these qualitative data to identify targets for an educational program to address the specific concerns in Asian/Pacific Islander communities regarding stem cell donation, and to increase retention among potential donors. Ultimately, we hope to increase the likelihood of successful stem cell transplant among Asian/Pacific Islander patients.