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70，000名年龄在15-39岁之间的AYA被诊断出患有癌症， 关于他们的治疗后医疗保健利用模式、护理经验或患者报告的 成果。先前的研究表明，AYA幸存者可能会在术后经历多种挑战。 治疗护理，包括护理连续性差，患者与提供者沟通不足， 尽管有可用的国家临床护理指南，但治疗后医疗保健服务不理想。推进 研究，影响临床指南，改善AYA癌症护理，我们需要护理模式的证据， AYA患者的医疗保健经历和护理障碍，以及患者报告的结局 特别是在向早期幸存者过渡的过程中。为了填补现有知识的空白， 本研究的目的是：1）评估AYA的门诊、急诊和住院服务利用模式 幸存者，并确定患者，提供者和系统级因素的变化; 2）检查患者报告的 护理经验和护理障碍，侧重于感知的护理协调和沟通， 提供者;以及3）确定接受指南一致的门诊服务与 患者报告的结局。我们将利用诊断后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 来自五个大规模地理多样性数据资源的超过60，000名AYA幸存者，包括Kaiser 永久北方和南方加州（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， 以及来自北卡罗来纳州癌症登记处和行政索赔的相关数据。我们将会用这些 以人口为基础的数据，以评估2006年至2016年期间被诊断患有 10种最常见的癌症在目标2中，我们将使用来自P01调查的5，000 AYA的数据 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类型治疗后护理的一致性 （N= 6，281）与国家指南，并评估测量的指南一致性护理的相关性 通过KPNC和KPSC电子数据库以及患者报告的基于调查的结局。这一创新 这项研究将是第一个研究在一个大型和多样化的AYA中向早期生存护理过渡的研究 人口我们的项目目标和分析是我们P01计划的核心，并补充其他项目 通过在亚组分析中关注相似的癌症部位（项目1，3），并通过提供数据集分类 其他分析的指南一致性（项目3）。总的来说，我们的结果将推动AYA的状态 研究，告知临床指南，并为患者，提供者和系统级提供可操作的发现 改善AYA癌症幸存者的护理质量和结果。

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.