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，护理和癌症幸存者的模式每年，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信任后医疗保健利用，护理经验或患者报告的模式知之甚少结果。治疗护理，包括护理的连续性差，患者提供的沟通不足和接收尽管有可用的国家临床护理指南，但次优处的医疗保健服务。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，尤其是在早期生存期间，以解决当前知识的差距我们的项目的目的是：1）评估门诊的模式幸存者并确定Patiance，提供商和系统级别的变化； 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和3）确定指南征用门诊服务与患者报告的结果。整合医疗保健系统，基于州的数据资源和患者调查。从五个大规模地理位置多样的数据资源中的60,000名AYA幸存者开始，使Kaiser不满意永久北方健康记录和研究数据库，加利福尼亚和犹他州的癌症登记处与Corressponding State Hosspitalization数据库有关并链接了北卡罗来纳州癌症登记册和行政索赔的数据。基于Poption的数据，以评估2006年至2016年诊断的个人之间的护理模式 AIM 2中最常见的AYA癌症。来自KPNC，KPSC和北卡罗来纳州人口的癌症幸存者到描述师护理经验2 - 5年在AIM 3中诊断，我们将确定癌症类型的治疗后护理（n = 6,281）具有国家准则并评估指导方通心护理协会的测量通过KPNC和CPSC电子数据库，具有基于患者的结果研究将是第一个在大而多样的AYA中检查早期生存护理过渡的研究者之一我们的项目的目标和分析是我们的P01计划的核心通过关注亚组分析（项目1，3）中的类似癌症站点，并通过提供分类数据集其他Onalyses的指南协和（项目3）。研究，合理的准则，并为患者和系统级提供可行的发现改善AYA癌症幸存者的护理质量和结果的干预措施。