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.

The ratio of malignancy in suspicious soft tissue and bone neoplasms (RMST) has not been often addressed in the literature. However, this value is important to understand whether biopsies are performed too often, or not often enough, and may therefore serve as a quality indicator of work-up for a multidisciplinary team (MDT). A prerequisite for the RMST of an MDT is the assessment of absolute real-world data to avoid bias and to allow comparison among other MDTs. Analyzing 950 consecutive biopsies for sarcoma-suspected lesions over a 3.2-year period, 55% sarcomas were confirmed; 28% turned out to be benign mesenchymal tumors, and 17% non-mesenchymal tumors, respectively. Of these, 3.5% were metastases from other solid malignancies, 1.5% hematologic tumors and 13% sarcoma simulators, which most often were degenerative or inflammatory processes. The RMST for biopsied lipomatous lesions was 39%. The ratio of unplanned resections was 10% in this series. Reorganizing sarcoma work-up into integrating practice units (IPU) allows the assessment of real-world data with absolute values over the geography, thereby enabling the definition of quality indicators and addressing cost efficiency aspects of sarcoma care.

Background/Objectives: This study evaluates the effectiveness of communication strategies and pain management protocols to enhance patients’ experiences during sarcoma core biopsies. Recognizing the complexity and anxiety associated with sarcoma diagnoses, this research aims to assess the utility of the Invasive Procedure Assessment (IPA) tool, focusing on its ability to identify areas for improvement through Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs). Methods: Conducted at two Integrated Practice Units (IPUs) within the Swiss Sarcoma Network, this study involved 282 consecutive patients who underwent core biopsies. One week post-procedure, patients completed the IPA questionnaire, which included PROMs and PREMs. Statistical analyses explored correlations between physician communication, patient understanding, anxiety, pain, and overall satisfaction. Results: The IPA tool effectively captured patient perspectives on sarcoma core biopsies. A significant positive correlation (rho = 0.619, p < 0.0001) was found between effective physician communication and patient understanding, which was associated with reduced anxiety and pain. Higher anxiety levels strongly correlated with increased pain perception (rho = 0.653, p < 0.0001), emphasizing the need for anxiety management. Patients with malignant tumors reported lower overall satisfaction compared to those with benign tumors (p = 0.0003), highlighting the need for tailored communication and pain management strategies. The data also suggested that clear communication might mitigate overly negative subjective impressions, such as concerns about wound complications. Conclusions: Effective communication and anxiety management are essential for improving patient satisfaction during sarcoma core biopsies. The study emphasizes the need for personalized care strategies tailored to tumor characteristics and patient demographics. Future research should validate these findings in diverse healthcare settings and explore the broader application of the IPA tool across different cultural and demographic contexts.