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癌症幸存者的护理和护理过渡模式每年，在美国，近70,000名AYA年龄在15-39岁之间被诊断出患有癌症关于他们的治疗后医疗保健利用，护理经验或患者报告的模式知之甚少结果。先前的研究表明，AYA的存活可能会在后期遇到多个挑战治疗护理，包括护理的连续性差，患者提供者的沟通不足和接收次优的后治疗后医疗服务目的地可用国家临床护理指南。前进研究，影响临床指南并改善AYA癌症护理，我们需要有关护理模式的证据，患者医疗保健经验和护理障碍，并在AYA中报告了患者的结果幸存者，特别是在过渡到早期生存期间。为了解决当前知识的差距，我们的项目的目的是：1）评估AYA中门诊，紧急和住院服务利用的模式幸存者并确定患者，提供者和系统级别因素的变化； 2）检查患者报告护理经验和护理障碍，专注于感知的护理和沟通提供者； 3）确定收到指导方案的门诊服务与患者报告的结果。我们将在诊断后2 - 5年中利用AYA表面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AIM 1中，我们将使用数据从五个大型地理上的大规模地理学数据资源（包括Kaiser）的60,000名AYA奔跑器起 Permanente Northern和Southern California（KPNC，KPSC）电子健康记录和研究数据库，加利福尼亚和犹他州癌症注册机构与相应的州住院数据库有关并联系了来自北卡罗来纳州癌症注册中心和行政主张的数据。我们将使用这些基于人群的数据，以评估2006年至2016年期间诊断的个人的护理模式 10种最常见的AYA癌症。在AIM 2中，我们将使用P01调查5,000 AYA的数据来自KPNC，KPSC和北卡罗来纳州人群的癌症表面表现出2 - 5年诊断后。在AIM 3中，我们将确定四种癌症治疗后护理的一致性（n = 6,281）具有国家准则，并评估了测量指南协会的协会通过KPNC和KPSC电子数据库，具有患者报告的基于调查的结果。这种创新研究将是第一个在大型多样的AYA中检查早期生存护理过渡的研究者之一人口。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关注亚组分析（项目1，3）中的类似癌症站点，并通过提供分类数据集其他分析的指南一致性（项目3）。总的来说，我们的结果将提高AYA的状态研究，为临床指南提供信息，并为患者，提供商和系统级别提供可行的发现改善AYA癌症存活中护理质量和结果的干预措施。