Core C: Survey Shared Resource Core

核心 C：调查共享资源核心

基本信息

批准号：
10658915
负责人：
Jessica Chubak
金额：
$ 15.87万
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/10658915
关键词：
Address Adolescent and Young Adult Adolescent and young adult cancer patients Age Biometry Breast California Cancer Survivor Cancer Survivorship Caring Cervical Characteristics Colorectal Continuity of Patient Care Data Data Analyses Data Collection Data Reporting Data Set Data Sources Diagnosis Electronic Health Record Electronic Mail Eligibility Determination Employment Enrollment Ensure Epidemiology Ethnic Origin Family Fertility Financial Hardship Funding Future Goals Health Health Resources Health Services Health Services Research Health behavior Healthcare Healthcare Systems Hodgkin Disease Incentives Individual Institutional Review Boards Insurance Internet Interview Letters Link Malignant Neoplasms Manuscripts Measures Medical Methods Non-Hodgkin&apos s Lymphoma North Carolina Online Systems Outcome Paper Participant Patient Care Patient Outcomes Assessments Patients Preparation Procedures Psychology Psychometrics Publishing Recommendation Recurrent Malignant Neoplasm Reporting Reproduction Research Research Methodology Research Personnel Resource Sharing Resources Respondent Sampling Site Sociology Source Specific qualifier value Survey Methodology Surveys Survivors Symptoms System Telephone Testing Thyroid Gland Time Universities Work aged barrier to care cancer care cancer recurrence cancer type care delivery clinical care cohort data cleaning data harmonization data quality data sharing networks design evidence base evidence based guidelines experience field survey improved insurance claims intervention delivery leukemia melanoma neoplasm registry patient-clinician communication pilot test population health population survey programs psychosocial quality assurance racial diversity recruit response sarcoma sound success synergism

项目摘要

ABSTRACT – Core C, Survey Shared Resource Data on cancer care experiences and patient-reported outcomes of adolescent and young adult (AYA) cancer survivors cannot be captured from administrative, cancer registry, or electronic health record data. Therefore, the primary goal of the Survey Core is to collect high-quality patient-reported information for all P01 projects to support completion of their specific aims and objectives. We will use efficient, evidence-based and psychometrically-sound methods to collect data and support projects in analyzing and interpret these data. To ensure success, the Survey Core team includes investigators with epidemiologic, health services, and psychometric research backgrounds and strong survey design experience related to cancer survivorship, patient care experiences, and patient-reported outcomes. The Core Specific Aims are to: 1. Design a survey that will support and enhance the aims and objectives for all projects, 2. Field the survey among 5,000 AYA survivors who are 2-10 years post diagnosis, 3. Provide cleaned survey data to Core B (Biostatistics and Data Harmonization Shared Resource), and 4. Assist Core B and projects in creating analytic datasets and using and interpreting survey data. The source population for the survey will be AYA cancer survivors, 2-10 post diagnosis, at Kaiser Permanente Northern California and Southern California healthcare systems and the State of North Carolina. The Survey Core will centrally recruit and administer the survey to a stratified random sample of survivors identified at all sites. Eligible survey respondents (12,500 invitees for 5,000 responses) must have been diagnosed at 15-39 years with one of the following 10 most common AYA cancers: breast, thyroid, melanoma, non-Hodgkin lymphoma, Hodgkin lymphoma, testicular, leukemia, cervical, sarcoma, or colorectal. The survey will include validated and published measures as well as new measures designed for this study, based on qualitative interviews; we will pilot test the survey and conduct psychometric analyses before finalizing. The Survey Core will field the survey following evidence-based survey design methods (Dillman’s Tailored Design approach) including a pre-incentive, multiple modes of contact (email, mail, phone), mixed survey modes (web, paper, and telephone), and an incentive for completion. We will use a comprehensive survey research management system to ensure timely and accurate tracking of survey participants (and nonresponders and refusers) and real-time reporting to maximize response rate and data quality. The Survey Core will perform quality assurance checks on all modes of data collection and return cleaned data to Core B, including dispositions (e.g., refusals, nonresponse) for appropriately weighting survey responses in analyses. The Survey Core will provide input on analysis plans that use patient-reported data. Survey Core investigators will participate in interpreting project findings and manuscript preparation. Centralizing all survey activities will ensure efficient and synergistic data collection across this program of research in AYA cancer survivors.

摘要 – 核心 C，调查共享资源关于青少年和年轻人 (AYA) 的癌症护理经历和患者报告结果的数据癌症幸存者无法从行政、癌症登记或电子健康记录数据中获取。因此，调查核心的主要目标是收集所有 P01 的高质量患者报告信息我们将使用高效、基于证据的项目来支持其具体目的和目标的完成。收集数据并支持分析和解释这些数据的项目的心理测量方法。为了确保成功，调查核心团队包括流行病学、卫生服务和与癌症生存相关的心理测量研究背景和丰富的调查设计经验，患者护理经历和患者报告的结果核心具体目标是： 1. 设计一项调查，以支持和加强所有项目的目的和目标， 2. 对诊断后 2-10 年的 5,000 名 AYA 幸存者进行实地调查， 3. 向核心 B（生物统计和数据协调共享资源）提供清理后的调查数据，以及 4. 协助核心 B 和项目创建分析数据集以及使用和解释调查数据。调查的来源人群将是 Kaiser 诊断后 2-10 岁的 AYA 癌症幸存者北加州和南加州医疗保健系统以及北卡罗来纳州的永久医疗保健系统。调查核心将集中招募和管理对幸存者分层随机样本的调查必须在所有地点确定合格的调查受访者（5,000 份回复中的 12,500 名受邀者）。在 15-39 岁时被诊断患有以下 10 种最常见的 AYA 癌症之一：乳腺癌、甲状腺癌、黑色素瘤、非霍奇金淋巴瘤、霍奇金淋巴瘤、睾丸癌、白血病、宫颈癌、肉瘤或结直肠癌。将包括经过验证和发布的措施以及为本研究设计的新措施，基于定性访谈；我们将在最终确定之前对调查进行试点测试并进行心理测量分析。调查核心将按照基于证据的调查设计方法（迪尔曼的定制设计）进行调查方法），包括预激励、多种联系方式（电子邮件、邮件、电话）、混合调查模式（网络、论文和电话），以及完成的激励措施。我们将使用全面的调查研究。管理系统，以确保及时、准确地跟踪调查（以及未答复者和拒绝者）和实时报告，以最大限度地提高响应率和数据质量。对所有数据收集模式进行质量保证检查，并将清理后的数据返回给 Core B，包括在适当的分析中对调查答复进行加权的处置（例如拒绝、不答复）。 Survey Core 将为使用患者报告数据的分析计划提供输入。参与解释项目结果和集中所有调查活动。确保在 AYA 癌症幸存者的研究项目中高效、协同地收集数据。