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

摘要 儿童癌症幸存者（PCS）经历与其癌症相关的不良结局的过度风险 他们的诊断和治疗。这些急性和慢性健康的积累和严重程度 疾病广泛影响PCS功能、生活质量和卫生保健资源利用。因此，委员会认为， 个人电脑更可能生活在经济困难中，教育程度较低， 健康，与同龄人相比，保险不足或没有保险。拉丁裔PCS风险特别高 具有较低的社会经济地位（SES与非拉丁裔PCS相比。这些因素均有助于 常规医疗护理的获得减少，被诊断患有癌症的拉丁裔儿童的总体生存率降低。 PCS的现有和完善的患者队列主要包括长期（至少5年）存活者和 拉丁裔PCS的比例相对较小，因此，结果数据告知我们对风险的理解， 癌症治疗的晚期效应，因此我们的临床实践指南，主要来自于 NHW PCS的经验。本建议的首要目标是确定和全面评估 拉丁裔PCS中的不良结局，这将为临床指南提供信息，并为早期，有针对性的 在这一脆弱和不断增长的PCS人群中，采取干预措施以减轻此类后果。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， 地理数据（UG 3规划阶段），这将允许分析祖先和SES之间的相互作用 在UH 3实施阶段，癌症治疗不良结果的风险。存在显著 未满足的需求，以全面表征社会经济，心理社会，基因组和代谢组学风险 在已知临床风险因素的背景下，拉丁美洲PCS中治疗相关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， 获得生存护理。因此，利用现有的和前瞻性收集的纵向数据，我们将：（1） 确定治疗相关毒性的人口统计学、临床和遗传/分子决定因素及其 与慢性健康状况、患者报告的症状以及神经认知/心理和 拉丁美洲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/再发的过度风险;以及（3）确定拉丁裔PCS理解 的风险和生存护理的理由，并确定感知的促进因素和障碍， 获得生存护理。该提案将多学科专业知识和从临床收集的数据结合起来， 建立一个前瞻性的、全面的生物库和数据库， 拉丁裔PCS的大量人口。我们的目标代表了迄今为止对遗传和社会经济地位的最大评估 拉丁美洲PCS结果的贡献者，这是一项为不良反应的风险评估提供信息的必要努力。 不同种族人群的结局，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.