Quality of Sarcoma Care: Longitudinal Real-Time Assessment and Evidence Analytics of Quality Indicators
Philip Heesen, Gabriela Studer, Beata Bode, Hubi Windegger, Benjamin Staeheli, Paul Aliu, Javier Martín‐Broto, Alessandro Gronchi, Jean‐Yves Blay, Axel Le Cesne, Bruno Fuchs
Abstract
Sarcomas represent a large group of rare to very rare diseases, requiring complex management with a transdisciplinary approach. Overall progress has been hampered because of discipline, institution and network fragmentation, and there is no global data harmonization or quality standards. To report on and improve quality, a common definition of quality indicators (QIs) of sarcoma care as well as the capacity to assess longitudinal real-time data is required. An international advisory board of world-renowned sarcoma experts defined six categories of QIs, totaling more than 80 quality indicators. An interoperable (web-based) digital platform was then created combining the management of the weekly sarcoma board meeting with the sarcoma registry and incorporating patient-reported outcome measures (PROMs) into the routine follow-up care to assess the entire care cycle of the patient. The QIs were then programmed into the digital platform for real-time analysis and visualization. The definition of standardized QIs covering all physician- (diagnostics and therapeutics), patient- (PROMS/PREMS), and cost-based aspects in combination with their real-time assessment over the entire sarcoma care cycle can be realized. Standardized QIs as well as their real-time assessment and data visualization are critical to improving the quality of sarcoma care. By enabling predictive modelling and introducing VBHC, precision health care for a complex disease is on the horizon.