Core C: Survey Shared Resource Core

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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.