
Patient-based health related quality of life (HRQoL) measurements are associated with an improvement in quality of care and outcomes. For a complex disease such as sarcoma, there is no disease-specific questionnaire available which covers all clinically relevant dimensions. Herein, we report on the development of an electronically implemented, sarcoma-specific instrument to assess health-related outcomes, which encompasses a combination of generic questionnaires tailored to the respective disease and treatment status covering the entire longitudinal care cycle. An interoperable digital platform was designed to provide a node between patients and physicians and to integrate the sarcoma-specific HRQoL instrument with patient and physician-based quality indicators to allow longitudinal structured real-world-time data evidence analytics. This approach enables the prediction modeling of disease, and by attributing cost tags to quality indicators, treatment effectiveness for a given disease will be directly correlated with financial expenses, which may ultimately lead to a more sustainable healthcare system.
Medicine (General), R5-920, PROMs (patient reported outcome measurements), sarcoma-specific HRQoL instrument (health-related quality of life), Review, IELAS-RWTD/E (interoperable electronic longitudinal absolute structured real-world-time data/evidence), VBHC (value-based healthcare)
Medicine (General), R5-920, PROMs (patient reported outcome measurements), sarcoma-specific HRQoL instrument (health-related quality of life), Review, IELAS-RWTD/E (interoperable electronic longitudinal absolute structured real-world-time data/evidence), VBHC (value-based healthcare)
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