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，在这方面， 癌症治疗往往导致其他严重问题，包括慢性健康问题和过早死亡。 这些健康问题被称为“迟发效应”，定义为任何不利的医疗或心理社会 治疗后出现或持续的结果。治疗后25年，超过三分之二的儿童 癌症幸存者（CSS）至少有一个临床上显着的晚期效应，超过三分之一， 出现一种或多种严重或危及生命的晚期效应。因此，终身癌症关注的长期 随访护理（LTFU）对于CCS筛查、预防和治疗晚期效应至关重要。我们目前 对CCS的了解主要来自1970年至1986年诊断的成年CCS队列 (The儿童癌症生存者研究-CCSS），主要由非西班牙裔白色 幸存者然而，研究表明，来自种族和少数民族背景的CCS经历 显著的健康差异，因此需要对不同背景的CCS进行更多的研究， 了解差异，以解决和扭转它们。LTFU的发生率和影响癌症集中的因素 亚裔美国人（AA）CCS中的治疗情况不详。AA人口是增长最快的种族 是美国最大的新移民群体，59%的美国亚裔人口出生于 在另一个国家。这一群体在文化和社会经济上是异质的， 2000年和2015年预计将增长到超过10%的美国人口到2050年。因此，AA的数量 CCS预计将增加，在这方面需要更多地关注LTFU的促进者和障碍 人口研究不足。此外，许多亚洲移民居住在种族集中的社区， （种族飞地），这可能会影响AA CCS在LTFU中的参与。我们打算招募一批人- 在洛杉矶和橙子的大约330名年轻成人AA CCS及其父母（N=100）的队列中 县检查有关因素的生存护理利用。我们的目标是：目标1：我们将 在亚洲CCS人群中，以癌症为中心的生存护理的利用率。目标2：我们 通过定性访谈和调查方法，研究个人和家庭层面的因素， 在AA CCS及其父母中使用以癌症为重点的生存护理。目标3：我们将进行调查 居住在种族集中的社区对LTFU利用的影响。拟议 研究将提供指导，以确定和解决AA CCS对生存护理利用的需求， 增加文化上一致的外联和干预战略，以使这些社区服务人员参与并留在护理中。

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.