Individual, cultural, and area-based factors associated with survivorship care among Asian/Asian American childhood cancer survivors

摘要 随着儿童癌症治疗的进步，超过80%的患者实现了长期生存。然而， 癌症治疗通常会导致其他严重问题，包括慢性健康问题和早期死亡。 这些健康问题被称为“后遗症”，定义为任何不良的医疗或心理社会影响。 在治疗后发展或持续的结果。在治疗后的25年里，超过三分之二的儿童 癌症幸存者(CS)至少产生了一种临床上显著的后遗症，超过三分之一 出现一种或多种严重的或危及生命的后遗症。因此，终生专注于癌症的长期 后续护理(LTFU)是CCS筛查、预防和治疗晚期效应的关键。我们目前的情况 对CCS的了解主要来自1970至1986年间诊断的成人CCS队列 (儿童癌症幸存者研究-CCSS)，主要由非西班牙裔白人组成 幸存者。然而，研究表明，来自种族和少数民族背景的CCS经历了 不同背景的CCS之间存在显著的健康差异，因此需要更多的研究来 了解差距，以解决和扭转差距。LTFU率及影响肿瘤聚焦的因素 亚裔美国人(AA)CCS的护理尚不清楚。AA人群代表着增长最快的种族 美国最大的新移民群体，59%的美国亚裔人口出生 在另一个国家。这一群体在文化和社会经济上是异质性的，在 预计到2050年，2000年和2015年将增长到美国人口的10%以上。因此，AA的数量 CCS预计将增加，需要更多地关注LTFU的促进者和障碍 研究不足的人群。此外，许多亚洲移民生活在种族集中的社区 (种族飞地)，这可能会影响LTFU对AA CCS的参与。我们建议招募一批人- 基于洛杉矶和奥兰治约330名年轻成年AA CC及其父母(N=100)的队列 各县审查与生存护理利用相关的因素。我们的目标是：目标1：我们将 以人群为基础，在亚洲CCS人群中使用以癌症为重点的生存护理。目标2：我们将 通过定性访谈和调查方法考察与以下方面相关的个人和家庭层面的因素 再生障碍性贫血患者及其父母对以癌症为重点的生存护理的利用。目标3：我们将调查 居住在民族聚居区对LTFU利用的影响。建议数 研究将提供指导，以确定和满足AA CCS对生存护理利用的需求 增加文化契合的外展和干预战略，以吸引和留住这些CCS在护理中。

Abstract With treatment advances for childhood cancer, over 80% of patients achieve long-term survival. However, cancer treatments often lead to other serious issues, including chronic health problems and early mortality. These health problems are referred to as “late effects,” defined as any adverse medical or psychosocial outcome that develops or persists after treatment. By 25 years following treatment, over two-thirds of childhood cancer survivors (CSS) have developed at least one clinically significant late effect, with over one-third developing one or more severe or life-threatening late effect. As a result, life-long cancer-focused long-term follow-up care (LTFU) is essential for CCS to screen for, prevent, and treat late effects. Our current understanding of among CCS comes primarily from a cohort of adult CCS diagnosed between 1970 and 1986 (The Childhood Cancer Survivor Study-CCSS) which is comprised of predominantly non-Hispanic white survivors. However, studies have shown that CCS from racial and ethnic minority backgrounds experience significant health disparities and thus more research is required among CCS of diverse backgrounds to understand disparities to address and reverse them. Rates of LTFU and factors influencing cancer-focused care among Asian American (AA) CCS are unknown. AA populations represent the fastest growing ethnic group in the United States and the largest group of new immigrants, with 59% of the US Asian population born in another country. This group is culturally and socioeconomically heterogenous and has grown 72% between 2000 and 2015 is projected to grow to more than 10% of the US population by 2050. Thus, the number of AA CCS is expected to increase, and a greater focus on facilitators and barriers to LTFU is needed in this underresearched population. Further, many Asian immigrants live in ethnically concentrated neighborhoods (ethnic enclaves) which may influence engagement in LTFU for AA CCS. We propose to recruit a population- based cohort of roughly 330 young adult AA CCS and their parents (N=100) in Los Angeles and Orange Counties to examine factors related to survivorship care utilization. Our aims are: Aim 1: We will characterize on a population basis the utilization of cancer-focused survivorship care among Asian CCS. Aim 2: We will examine through qualitative interviews and survey methods individual- and family-level factors associated with the utilization of cancer-focused survivorship care among AA CCS and their parents. Aim 3: We will investigate the effect of residing in an ethnically concentrated neighborhood on the utilization of LTFU. The proposed research will provide guidance to identify and address needs among AA CCS for survivorship care utilization to increase culturally congruent outreach and intervention strategies to engage and retain these CCS in care.