Project 3: Chronic Medical Conditions and Late Effects in the AYA Cancer Population

摘要-项目3，对阿亚癌症人群的晚期效应 很少有研究评估美国青少年幸存者的长期医疗结果 癌症(Aya)，这是受癌症影响的寿命最长的人群之一。关于阿雅的研究 幸存者发现，哮喘、糖尿病和第二次癌症等疾病的风险增加，但通常 不详细考虑治疗或根据临床或患者因素检查结果以确定哪些是较高的 有后遗症和较差存活率的风险。这一有限的研究阻碍了长期护理指南的制定和 旨在改善这一人群健康状况的干预措施。为了解决这些证据差距，我们建议 阿亚癌症幸存者临床护理因素的详细检查及其与远期疗效的关系 使用整合的P01数据资源：Kaiser Permanente(KP)的临床和研究基础设施； 基于人口的加州癌症登记中心(CCR)和犹他州癌症登记中心(UCR)，两者都与全州范围内的 医疗保健数据；以及来自包括北卡罗来纳州在内的约5,000名癌症AYA的调查数据。金伯利进程 北加州(KPNC)和南加州(KPSC)集成的医疗保健系统提供 全面的医疗保健服务，并使用电子健康记录，便于调查 癌症及其治疗。CCR-住院来自于美国最大、最多样化的医院之一。 癌症登记与全州住院、急诊科和门诊手术数据。这个 对于许多农村和医疗服务不足的居民来说，UCR-住院的来源相似。有了这些 不同的资源，这项研究将评估慢性医疗条件和迟发效应(统称为迟发 对癌症幸存者的影响)，并将：1)确定晚期影响的发生率，检查风险如何变化 按原发癌症类型、具体治疗方法、种族/民族、社区社会经济状况、 和医疗保险覆盖范围；2)检查与指南一致的生存护理和住院患者和 门诊就诊多种类型的提供者与晚期效应的风险相关；以及3)评估 患者报告的护理障碍对晚期效应的影响。我们将使用一个约53,000名确诊为AYA的队列 从2006年到2019年在加利福尼亚州患有癌症；大约13,000人将在KPNC或 KPSC.来自KPNC、KPSC和加州医院的数据允许对Aya癌症的医疗结果进行随访 离开金伯利进程制度或在金伯利进程制度之外寻求保险的幸存者，并促进将这些人 为需要住院的后遗症寻求综合护理系统内外的护理。我们的 来自犹他州的约8,400名年度居民将加强分析，其中约1,700名是农村居民。我们 假设有保险和财务障碍等护理障碍的AYA的晚期效应负担更高 对初始护理和生存护理都有影响的担忧。该项目的结果将以循证为基础 通过表征差异来预防和监测AYA癌症后遗症的指南 以及在接受必要护理方面的独特障碍，并导致制定减轻后遗症影响的战略。

ABSTRACT – Project 3, Late Effects in the AYA Cancer Population Few studies have evaluated long-term medical outcomes in US survivors of adolescent and young (AYA) cancers, a population with among the greatest number of life-years affected by cancer. Studies on AYA survivors find elevated risks of medical conditions such as asthma, diabetes, and second cancers, but typically do not consider treatment in detail or examine results by clinical or patient factors to identify those at higher risk for late effects and poorer survival. This limited research hinders creating long-term care guidelines and interventions to improve health outcomes in this population. To address these evidence gaps, we propose a detailed examination of clinical care factors and their association with late effects in AYA cancer survivors using integrated P01 data resources: the clinical and research infrastructure of Kaiser Permanente (KP); the population-based California Cancer Registry (CCR) and Utah Cancer Registry (UCR), both linked to statewide healthcare data; and survey data from ~5,000 AYAs with cancer, including from North Carolina. The KP Northern California (KPNC) and Southern California (KPSC) integrated healthcare systems provide comprehensive healthcare services and use electronic health records that facilitate investigating late effects of cancer and its treatment. The CCR-hospitalization are from linking one of the largest, most diverse U.S. cancer registries with statewide hospitalization, emergency department, and ambulatory surgery data. The UCR-hospitalization are from similar sources for many rural and medically underserved residents. With these diverse resources, this study will assess chronic medical conditions and late effects (collectively called late effects) in AYA cancer survivors and will: 1) determine the incidence of late effects, examining how risks vary by primary cancer type, specific treatment approaches, race/ethnicity, neighborhood socioeconomic status, and health insurance coverage; 2) examine how guideline-concordant survivorship care and inpatient and outpatient visits to multiple provider types are associated with the risk of late effects; and 3) evaluate the influence of patient-reported barriers to care on late effects. We will use a cohort of ~53,000 AYAs diagnosed with cancer from 2006 through 2019 in California; ~13,000 will have been diagnosed and treated at KPNC or KPSC. Data from KPNC, KPSC and California hospitals allows medical outcome follow-up of AYA cancer survivors who leave or seek coverage outside the KP system and facilitates comparisons between those seeking care within and outside an integrated care system for late effects requiring hospitalization. Our analyses will be enhanced by approximately 8,400 AYAs from Utah, of whom ~1,700 are rural residents. We hypothesize a higher burden of late effects among AYAs with care barriers such as insurance and financial concerns that impact both initial and survivorship care. Results from this project will inform evidence-based guidelines on prevention and surveillance of late effects among AYAs with cancer by characterizing disparities and unique barriers to receipt of necessary care and lead to strategies to mitigate the impact of late effects.