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<p>The assessment of patient-reported outcomes (PROs) regarding health-related quality of life (HRQoL) in oncology has the potential to generate knowledge, improve clinical care, and make health services more equitable and patient-centered. To this end, standardization of assessed domains and instruments (patient-reported outcome measures, PROMs) is essential, because the variety of PROMs for one PRO domain hinders comparability. Challenges are selection and prioritization of PROs and PROMs, choice between disease-specific vs. generic measures, user burden, and interoperability. Standardization can be achieved by defining core outcome sets that include clinical and patient-reported outcomes. Moreover, the diversity of established PROMs and user-specific requirements can be acknowledged by developing scales based on constructs rather than instruments. This allows comparison of PROs assessed with different PROMs. In Germany, the National Center for Tumor Diseases (NCT) uses PROs in translational cancer research and advances Germany-wide standardization. The Medical Informatics Initiative (MII) facilitates data interoperability. Europe-wide, the European Health Data Space (EHDS) creates a&#xa0;dataspace for exchange and use of health data. The European Health Outcomes Observatory (H2O) shall provide patient-centered outcomes for the EHDS resulting from routine care settings.</p>

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Systematische Erfassung der Lebensqualität

  • 期刊论文

  • 发表日期：

    2025年9月2日

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  • A. Förster,
  • A. Rogge,
  • M. Rose,
  • F. Fischer

摘要

The assessment of patient-reported outcomes (PROs) regarding health-related quality of life (HRQoL) in oncology has the potential to generate knowledge, improve clinical care, and make health services more equitable and patient-centered. To this end, standardization of assessed domains and instruments (patient-reported outcome measures, PROMs) is essential, because the variety of PROMs for one PRO domain hinders comparability. Challenges are selection and prioritization of PROs and PROMs, choice between disease-specific vs. generic measures, user burden, and interoperability. Standardization can be achieved by defining core outcome sets that include clinical and patient-reported outcomes. Moreover, the diversity of established PROMs and user-specific requirements can be acknowledged by developing scales based on constructs rather than instruments. This allows comparison of PROs assessed with different PROMs. In Germany, the National Center for Tumor Diseases (NCT) uses PROs in translational cancer research and advances Germany-wide standardization. The Medical Informatics Initiative (MII) facilitates data interoperability. Europe-wide, the European Health Data Space (EHDS) creates a dataspace for exchange and use of health data. The European Health Outcomes Observatory (H2O) shall provide patient-centered outcomes for the EHDS resulting from routine care settings.