Quality of Sarcoma Care: Longitudinal Real-Time Assessment and Evidence Analytics of Quality Indicators

SIMPLE SUMMARY: This article comprehensively defines, assesses and analyzes quality indicators of sarcoma care. A novel interoperable digital platform is presented that gathers information from physicians (work-up, therapy and MDT information) as well as patients (PROMS/PREMS) consecutively and instantly when a new event occurs, which thereby automatically provides evidence of the quality of care on all aspects. As the platform analyzes annotated real-time world information, predictive modelling and value-based health care may become a reality, thereby giving rise to precision health care in the future. 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.