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愈选择，越来越多地用于各种血液系统的恶性肿瘤和疾病。HSC移植到受者体内首先需要确定合适的人类白细胞抗原(HL A)匹配的捐赠者，一旦确定捐赠者的身份，就需要采集骨髓或外周干细胞。在美国，国家骨髓捐献者计划(NMDP)保留了一份潜在志愿者捐赠者的登记，这些捐赠者已经接受了初步的人类白细胞抗原配型。与白人相比，搜索NMDP注册的亚洲/太平洋岛民美国人(API)患者成功接受无关的、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患者可用的潜在匹配供体较少，可能是因为API人群中存在高度的人类白细胞抗原多态。虽然87%的白人患者在NMDP登记中找到了至少一个潜在的匹配捐赠者，但只有75%的API患者能够找到潜在的匹配。6其次，API群体中的志愿捐赠者从登记中流失的比率很高。在与患者初步匹配的潜在原料药捐赠者中，超过一半(56%)没有完成完成HSC采集和捐献所需的全部医疗和实验室测试。6我们建议从一个原料药社区(韩裔美国人)获得有关参与NMDP登记的定性数据。我们打算查明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加登记册的因素。为了解决这两个问题，我们将在社区NMDP登记活动之后，对18-60岁的韩国成年人进行40次基线深入的、半结构化的定性访谈；这些访谈的一半将在选择登记的参与者中进行，而另一半将在拒绝登记的参与者中进行。后续定性面谈将在基线面谈一年后对登记在NMDP登记册上的一半参与者进行。访谈主题将包括关于可能影响NMDP登记参与的文化信仰、知识和态度的讨论。我们相信，R03小额赠款计划提供了机会，以确定和探索与潜在的API造血干细胞捐赠者在国家登记计划中登记和保留相关的因素。这些定性数据将被用于确定教育计划的目标，以解决亚太地区岛民社区对造血干细胞捐赠的具体关切，并增加潜在捐赠者的留存率。最终，我们希望增加在亚洲/太平洋岛民患者中识别匹配的捐赠者并成功完成造血干细胞移植的可能性。公共卫生：我们相信，这一小额赠款提案提供了一个机会，可以诱导性地识别和探索与潜在的亚太岛民造血干细胞捐赠者在国家登记计划中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项目的目标，以解决亚太地区岛民社区对干细胞捐赠的具体关切，并增加潜在捐赠者的留存率。最终，我们希望增加亚太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.