Survivorship and Access to care for Latinos to Understand and address Disparities (SALUD)

摘要 儿科癌症幸存者(PCS)经历与其癌症相关的不良后果的额外风险 他们接受的诊断和治疗。这些急慢性健康的积累和严重程度 疾病广泛影响PCS的功能、生活质量和卫生保健资源的利用。因此， 个人电脑更有可能生活在经济困难中，受教育程度较低，因贫困而失业 健康，与年龄相仿的同龄人相比，保险不足或没有保险。拉丁裔PCS的风险特别高 由于拥有较低的社会经济地位(与非拉丁裔PCS相比，这些因素促成了 获得常规医疗服务的机会减少，被诊断患有癌症的拉丁裔儿童的总体存活率降低。 现有和成熟的PCS患者队列主要包括长期(至少5年)幸存者和 拉丁裔PCS的比例相对较小，因此结果数据有助于我们了解 癌症治疗的后遗症，因此我们的临床实践指南，很大程度上源于 NHW PCS的经验。这项提案的总体目标是确定和全面评估 拉丁裔PCS的不良后果将为临床指南提供信息，并为早期、有针对性的奠定基础 干预措施，以减轻这一脆弱和不断增长的PCS人口的这种后果。成功的关键 我们的建议是在德克萨斯州建立一个拉丁裔PCS队列，该队列与基因组和 地理数据(UG3规划阶段)，这将有助于分析祖先和SES之间的相互作用 关于UH3实施阶段癌症治疗结果不良的风险。有一个重要的 未满足的需要全面描述社会经济、心理社会、基因组和代谢风险 在已知临床危险因素的背景下，拉丁裔PCS中与治疗相关的毒性和复发的决定因素。 此外，在代表性不足的少数群体中，迫切需要确定促进者和障碍，以便 获得生存护理。因此，利用现有和预期收集的纵向数据，我们将：(1) 确定与治疗相关的毒性的人口统计学、临床和遗传/分子决定因素及其 与慢性健康状况、患者报告的症状和神经认知/心理和 拉丁裔PCS的功能结局；(2)确定人口统计学、临床和遗传/分子决定因素 拉丁裔PCS队列中癌症复发/复发的超额风险；以及(3)决定拉丁裔PCS的理解 评估晚期效应的风险和生存护理的理由，并确定感知的促进者和障碍 获得生存护理。这项建议结合了多学科的专业知识和从临床收集的数据 和流行病学资源，以建立一个预期的、全面的生物库和数据库，包括 大量的拉丁裔PCS。我们的目标代表了迄今为止对遗传和SES的最大评估 拉丁裔PCS结果的贡献者，这一努力势在必行，为不利的风险评估提供信息 不同种族人群的结果，以及获得最佳生存护理的潜在障碍。

ABSTRACT Pediatric cancer survivors (PCS) experience an excess risk of adverse outcomes related to their cancer diagnosis and the treatment they receive. The accumulation and severity of these acute and chronic health conditions broadly impact PCS functioning, quality of life, and health care resource utilization. Consequently, PCS are more likely to live in financial hardship, have lower educational attainment, be unemployed due to poor health, and be under- or uninsured compared with their age-based peers. Latino PCS are at particularly high risk for having a lower socioeconomic status (SES compared with non-Latino PCS. These factors contribute to reduced access to routine medical care, and lower overall survival of Latino children diagnosed with cancer. Existing and well-established patient cohorts of PCS largely include long-term (at least 5 years) survivors and a relatively small proportion of Latino PCS, so that the outcome data that inform our understanding of risk for cancer treatment late effects, and therefore our clinical practice guidelines, are largely derived from the experiences of NHW PCS. The over-arching objective of this proposal is to identify and comprehensively assess adverse outcomes among Latino PCS that will inform clinical guidelines and lay the foundation for early, targeted interventions to mitigate such outcomes in this vulnerable and growing population of PCS. Key to the success of our proposal is the prospective establishment of a Latino PCS cohort in Texas that is linked with genomic and geographic data (UG3 planning phase), which will permit analyses of the interaction between ancestry and SES on risk for adverse cancer treatment outcomes during the UH3 implementation phase. There is a significant unmet need to comprehensively characterize the socioeconomic, psychosocial, genomic, and metabolomic risk determinants of treatment-related toxicities and relapse in Latino PCS in the context of known clinical risk factors. In addition, among under-represented minorities there is a critical need to identify facilitators and barriers to obtaining survivorship care. Therefore, utilizing existing and prospectively collected longitudinal data, we will: (1) Identify demographic, clinical, and genetic/molecular determinants of treatment-related toxicities and their association with chronic health conditions, patient-reported symptoms, and neurocognitive/ psychological and functional outcomes in Latino PCS; (2) Identify demographic, clinical, and genetic/molecular determinants of the excess risk of cancer relapse/recurrence in a cohort of Latino PCS; and (3) Determine Latino PCS understanding of risk for late effects and rationale for survivorship care, and identify perceived facilitators and barriers to obtaining survivorship care. This proposal synergizes multidisciplinary expertise and data collected from clinical and epidemiological resources to establish a prospective, comprehensive biobank and database inclusive of a large population of Latino PCS. Our aims represent the largest assessment to date of genetic and SES contributors to outcomes in Latino PCS, an effort that is imperative to inform risk assessments for adverse outcomes in an ethno-diverse population, as well as potential barriers to obtaining optimal survivorship care.