Core C: Survey Shared Resource Core

摘要-核心C，调查共享资源 青少年和年轻成人（AYA）的癌症护理经验和患者报告结局数据 癌症幸存者不能从行政、癌症登记或电子健康记录数据中获得。 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 支持完成其具体目标和宗旨的项目。我们将使用高效、循证和 心理测量学的声音方法来收集数据和支持项目分析和解释这些数据。到 为了确保成功，调查核心小组包括流行病学、卫生服务和 心理测量学研究背景和与癌症生存率相关的丰富调查设计经验， 患者护理经验和患者报告的结果。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宗旨和目标， 2.在5,000名确诊后2-10年的AYA幸存者中进行调查， 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，使用和解释调查数据。 调查的源人群将是Kaiser的AYA癌症幸存者，诊断后2-10岁 永久性北方加州和南方加州医疗保健系统以及北卡罗来纳州。 调查核心将集中招募幸存者，并对幸存者进行分层随机抽样调查 在所有网站上找到。合格的调查受访者（12，500名受邀者，5，000份回复）必须是 在15-39岁时被诊断出患有以下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、白血病、宫颈、肉瘤或结肠直肠。调查 将包括已验证和已发布的措施以及为本研究设计的新措施， 定性访谈;我们将在最后确定调查之前进行试点测试和心理测量分析。的 Survey Core将按照循证调查设计方法（Dillman的定制设计）进行调查 方法），包括预激励、多种联系模式（电子邮件、邮件、电话）、混合调查模式（网络， 文件和电话），并鼓励完成。我们将采用全面的调查研究 管理系统，以确保及时和准确地跟踪调查参与者（和无答复者， 拒绝者）和实时报告，以最大限度地提高响应率和数据质量。调查核心将执行 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至核心B，包括 配置（例如，拒绝，无应答），以便在分析中适当加权调查应答。的 Survey Core将为使用患者报告数据的分析计划提供输入。核心调查员将 参与项目成果的解释和稿件的准备。集中所有调查活动将 确保在AYA癌症幸存者的研究计划中有效和协同的数据收集。

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.