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性治疗选择，越来越多地用于各种血液恶性肿瘤和疾病。HSC移植到受体患者中首先需要鉴定合适的人类白细胞抗原（HLA）匹配的供体，并且一旦鉴定出供体就收获骨髓或外周干细胞。在美国，国家骨髓捐献者计划（NMDP）对已经进行了初步HLA分型的潜在志愿捐献者进行了登记。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、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，这可能是因为API人群中HLA多态性较高。虽然87%的白色患者在NMDP登记研究中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。6其次，API组中的志愿供体在登记研究中的流失率很高。与患者初步匹配的API潜在供体中，超过一半（56%）未完成完成HSC收获和捐献所需的全部医学和实验室检测。6我们建议从一个API社区（韩裔美国人）获得有关参与NMDP登记研究的定性数据。我们打算确定影响最初决定参加供体登记的因素，以及随着时间的推移继续参加登记的因素。为了解决这两个问题，我们将在社区NMDP登记注册活动之后，对18-60岁的韩国成年人进行40次基线深入，半结构化的定性访谈;其中一半的访谈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。将在NMDP登记研究中登记的一半参与者中进行基线访谈一年后进行后续定性访谈。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，这项R 03小额赠款提案提供了一个机会，以确定和探索与潜在的API造血干细胞捐献者在国家登记计划中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/太平洋岛民社区对造血干细胞捐献的具体关切，并提高潜在捐献者的保留率。最终，我们希望增加在亚洲/太平洋岛民患者中识别HLA匹配供体并成功完成造血干细胞移植的可能性。公共卫生：我们相信，这项小额赠款提案提供了一个机会，可以归纳识别和探索与潜在的亚洲/太平洋岛民造血干细胞捐献者在国家登记计划中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注，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.