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

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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.