Project 2: Patterns of Care and Patient Experiences During Early Survivorship Among AYA Cancer Survivors

摘要-项目2，Aya癌症幸存者的护理模式和护理过渡 在美国，每年有近7万名15-39岁的AYA被诊断出患有癌症，但 对他们治疗后医疗保健利用的模式、护理经验或患者报告的情况知之甚少 结果。先前的研究表明，Aya幸存者可能会在术后经历多重挑战 治疗护理，包括护理连续性差，患者与提供者沟通不足，以及接受 尽管有国家临床护理指南，但治疗后医疗保健服务并不理想。晋级 研究，影响临床指南，改善癌症护理，我们需要关于护理模式的证据， Aya中的患者保健体验和护理障碍，以及患者报告的结果 幸存者，特别是在向早期幸存者过渡期间。为了解决当前知识中的空白， 本项目旨在：1)评估阿亚市的门诊、急诊和住院服务利用模式 幸存者并根据患者、提供者和系统级别的因素确定差异；2)检查患者报告 护理经验和护理障碍，重点关注护理的感知协调和与 提供者；以及3)确定接受与指南一致的门诊服务与 患者报告的结果。我们将利用来自确诊后2-5年的Aya幸存者的数据 集成的医疗保健系统、基于州的数据资源和患者调查。在目标1中，我们将使用数据 来自包括Kaiser在内的五个不同地理位置的大型数据源的60,000名Aya幸存者 永久北加州和南加州(KPNC，KPSC)电子健康记录和研究 数据库，加州和犹他州癌症登记处链接到相应的州住院数据库， 以及北卡罗来纳州癌症登记处的相关数据和行政索赔。我们将使用这些 基于人群的数据，以评估2006至2016年间确诊为 10种最常见的Aya发病癌症。在目标2中，我们将使用来自P01调查的5,000阿雅数据 来自KPNC、KPSC和北卡罗来纳州人群的癌症幸存者描述2-5年的护理经历 诊断后。在目标3中，我们将确定四种癌症治疗后护理的一致性 (n=6,281)符合国家指南，并评估衡量的指南-一致性护理的关联性 通过KPNC和KPSC电子数据库提供患者报告的基于调查的结果。这是一项创新 这项研究将是第一批在大范围和多样化的AYA中检查向早期生存护理过渡的研究之一 人口。我们的项目目标和分析是我们P01计划的核心，是对其他项目的补充 通过关注亚组分析中的相似癌症部位(项目1、3)，并提供分类数据集 其他分析的指南一致性(项目3)。总体而言，我们的结果将推动阿亚州 研究、告知临床指南，并为患者、提供者和系统级别提供可操作的结果 改善Aya癌症幸存者护理质量和预后的干预措施。

ABSTRACT – Project 2, Patterns of Care and Care Transitions in AYA Cancer Survivors Each year, almost 70,000 AYAs aged 15-39 years are diagnosed with cancer in the United States, yet little is known about their patterns of post-treatment healthcare utilization, care experiences, or patient-reported outcomes. Prior research demonstrates that AYA survivors may experience multiple challenges during post- treatment care, including poor continuity of care, inadequate patient-provider communication, and receipt of suboptimal post-treatment healthcare services despite available national clinical care guidelines. To advance research, impact clinical guidelines, and improve AYA cancer care, we need evidence on patterns of care, patient healthcare experiences and barriers to care, and patient-reported outcomes among AYA survivors, particularly during the transition to early survivorship. To address gaps in current knowledge, our project aims to: 1) evaluate patterns of outpatient, emergency, and inpatient service utilization among AYA survivors and determine variations by patient-, provider-, and system-level factors; 2) examine patient-reported care experiences and barriers to care, focusing on perceived coordination of care and communication with providers; and 3) determine the relationship between receipt of guideline-concordant outpatient services and patient-reported outcomes. We will leverage data from AYA survivors 2–5 years post diagnosis from integrated healthcare systems, state-based data resources, and patient surveys. In Aim 1, we will use data from >60,000 AYA survivors from five large-scale geographically diverse data resources, including Kaiser Permanente Northern and Southern California (KPNC, KPSC) electronic health records and research databases, the California and Utah Cancer Registries linked to corresponding state hospitalization databases, and linked data from the North Carolina Cancer Registry and administrative claims. We will use these population-based data to evaluate patterns of care among individuals diagnosed between 2006 and 2016 with the 10 most common AYA-onset cancers. In Aim 2, we will use data from the P01 Survey of 5,000 AYA cancer survivors from KPNC, KPSC, and North Carolina populations to describe care experiences 2–5 years post diagnosis. In Aim 3, we will determine concordance of post-treatment care for four cancer types (N=6,281) with national guidelines and evaluate the association of guideline-concordant care measured through KPNC and KPSC electronic databases with patient-reported survey-based outcomes. This innovative study will be among the first to examine the transition to early survivorship care in a large and diverse AYA population. Our project aims and analyses are central to our P01 program and complement other projects through focus on similar cancer sites in subgroup analyses (Project 1, 3) and by providing datasets classifying guideline concordance for other analyses (Project 3). Collectively, our results will advance the state of AYA research, inform clinical guidelines, and provide actionable findings for patient-, provider-, and system-level interventions to improve care quality and outcomes among AYA cancer survivors.