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

项目 2：AYA 癌症幸存者早期生存期间的护理模式和患者体验

基本信息

批准号：
10658899
负责人：
Erin Elizabeth Hahn
金额：
$ 19.41万
依托单位：
KAISER FOUNDATION RESEARCH INSTITUTE
依托单位国家：
美国
项目类别：
财政年份：
2020
资助国家：
美国
起止时间：
2020-09-15 至 2026-06-30
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10658899
关键词：
Accident and Emergency department Address Adolescent Health Services Adolescent and Young Adult Adolescent and young adult cancer patients Adverse effects Adverse event Affect Aftercare Age Breast California Cancer Center Cancer Survivor Cardiovascular Diseases Caring Characteristics Classification Clinical Colorectal Communication Complement Consensus Continuity of Patient Care Data Data Set Databases Detection Diagnosis Disease Distress Educational Status Electronic Health Record Electronics Emergency medical service Emotional Employment Status Endocrine System Diseases Face Frequencies Geographic Locations Geography Goals Guidelines Healthcare Healthcare Systems Hodgkin Lymphoma survivors Hospitalization Individual Integrated Health Care Systems Intervention Knowledge Life Cycle Stages Link Lymphoma Malignant Neoplasms Malignant neoplasm of testis Marital Status Measures Methods National Comprehensive Cancer Network North Carolina Outcome Patient Care Patient Outcomes Assessments Patient Self-Report Patient-Centered Care Patients Pattern Patterns of Care Perception Population Preventive care Program Research Project Grants Provider Quality of Care Recommendation Reporting Research Resources Science Second Primary Cancers Services Site Subgroup Surveys Survival Rate Survivors Symptoms System Systems Integration Training United States Utah Variant Visit active method aged barrier to care cancer care cancer site cancer type care coordination clinical care data resource demographics diverse data emotional distress evidence base experience follow-up health care service health care service utilization health related quality of life improved innovation inpatient service insight medical specialties member multiple data sources neoplasm registry outpatient programs patient variability patient-clinician communication peer population based programs provider communication psychosocial service utilization survivorship treatment pattern

项目摘要

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.

摘要 – 项目 2，AYA 癌症幸存者的护理模式和护理转变在美国，每年有近 70,000 名 15-39 岁的 AYA 被诊断患有癌症，但人们对他们的治疗后医疗保健利用模式、护理经历或患者报告知之甚少结果。先前的研究表明，AYA 幸存者在康复后可能会经历多种挑战。治疗护理，包括护理连续性差、患者与提供者沟通不充分以及接收尽管有国家临床护理指南，治疗后医疗保健服务仍不理想。前进研究、影响临床指南并改善 AYA 癌症护理，我们需要护理模式的证据， AYA 中患者的医疗保健经历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。为了解决当前知识的空白，我们的项目旨在： 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、提供者和系统层面因素的变化； 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患者的沟通提供商； 3) 确定接受符合指南的门诊服务与患者报告的结果。我们将利用 AYA 幸存者诊断后 2-5 年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超过 60,000 名 AYA 幸存者，来自五个大规模的地理不同的数据资源，包括 Kaiser 北加州和南加州永久医疗机构 (KPNC、KPSC) 电子健康记录和研究数据库，加利福尼亚州和犹他州癌症登记处与相应的州住院数据库相连，以及来自北卡罗来纳州癌症登记处和行政索赔的链接数据。我们将使用这些基于人群的数据，用于评估 2006 年至 2016 年间诊断出患有以下疾病的个体的护理模式 10 种最常见的 AYA 发病癌症。在目标 2 中，我们将使用来自 5,000 AYA 的 P01 调查的数据来自 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护理的关联通过 KPNC 和 KPSC 电子数据库提供患者报告的基于调查的结果。这种创新的研究将是第一个研究在大型和多样化的 AYA 中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 P01 计划的核心，并补充其他项目通过在亚组分析（项目 1、3）中关注相似的癌症部位并提供分类数据集其他分析的指南一致性（项目 3）。总的来说，我们的成果将推动 AYA 的发展研究，为临床指南提供信息，并为患者、提供者和系统级别提供可操作的结果旨在改善 AYA 癌症幸存者的护理质量和结果的干预措施。