Clinical data collection related to prostate cancer (PCa) care is often unstructured or heterogeneous among providers, resulting in a high risk for ambiguity in its meaning when sharing or analyzing data. Ontologies, which are shareable formal (i.e., computable) representations of knowledge, can address these challenges by enabling machine-readable semantic interoperability. The purpose of this study was to identify PCa-specific key data elements (KDEs) for standardization in clinic and research.
A modified Delphi method using iterative online surveys was performed to report a consensus agreement on KDEs by a multidisciplinary panel of 39 PCa specialists. Data elements were divided into three themes in PCa and included (1) treatment-related toxicities (TRT), (2) patient-reported outcome measures (PROM), and (3) disease control metrics (DCM).
The panel reached consensus on a thirty-item, two-tiered list of KDEs focusing mainly on urinary and rectal symptoms. The Expanded Prostate Cancer Index Composite (EPIC-26) questionnaire was considered most robust for PROM multi-domain monitoring, and granular KDEs were defined for DCM.
This expert consensus on PCa-specific KDEs has served as a foundation for a professional society-endorsed, publicly available operational ontology developed by the American Association of Physicists in Medicine (AAPM) Big Data Sub Committee (BDSC).
Cancers. 2023 Jun 08*** epublish ***
Amy Moreno, Abhishek A Solanki, Tianlin Xu, Ruitao Lin, Jatinder Palta, Emily Daugherty, David Hong, Julian Hong, Sophia C Kamran, Evangelia Katsoulakis, Kristy Brock, Mary Feng, Clifton Fuller, Charles Mayo
Department of Radiation Oncology, University of Texas MD Anderson Cancer Center, Houston, TX 77030, USA., Department of Radiation Oncology, Loyola University Medical Center, Berwyn, IL 60402, USA., Department of Biostatistics, University of Texas MD Anderson Cancer Center, Houston, TX 77030, USA., Department of Medical Physics, Virginia Commonwealth University, Richmond, VA 23284, USA., Department of Radiation Oncology, University of Cincinnati College of Medicine, Cincinnati, OH 45267, USA., Department of Radiation Oncology, University of Southern California, Los Angeles, CA 90089, USA., Department of Radiation Oncology, University of California San Francisco, San Francisco, CA 93701, USA., Department of Radiation Oncology, Massachusetts General Hospital, Boston, MA 02129, USA., Department of Radiation Oncology, James A Haley VA Medical Center, Tampa, FL 33612, USA., Department of Imaging Physics, University of Texas MD Anderson Cancer Center, Houston, TX 77030, USA., Department of Radiation Physics, University of Michigan, Ann Arbor, MI 48109, USA.