The Sarcoma-Specific Instrument to Longitudinally Assess Health-Related Outcomes of the Routine Care Cycle

Abstract

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 Sarcoma Assessment Measure (SAM): Preliminary Psychometric Validation of a Novel Patient-Reported Outcome Measure

“…We also wanted to be able to derive a scoring formula to enable patients and/or clinicians to monitor changes over time. Health models suggest clinical care only contributes to 20% of clinical outcome [ 39 ], and therefore, we wanted to base the content of the measure on the aspects of living with a sarcoma diagnosis that were most important to patients. While some authors equate “experience” to “experience of healthcare” [ 23 ]—the biomedical model of assessing outcome—we aimed to take a more holistic person-centred approach.…”

Transdisciplinary sarcoma care: a model for sustainable healthcare transformation

“…In value-based healthcare, patient-reported outcome measures (PROMs) play a crucial role in assessing treatment effectiveness and improving outcomes, providing valuable insights beyond clinical metrics [9]. While numerous patient-reported outcome measures exist, only a few have been created for sarcoma surgery [13]. One widely used patient-reported outcome measure is the EQ-5D, which in-cludes five questions on general health dimensions and has been validated for various diseases, including cancer.…”

“…Sarcoma surgery and care present challenges because treatments are individualised and multidimensional. To address these challenges, the Swiss Sarcoma Network has developed a novel health-related quality of life (HRQOL) instrument [13]. This survey instrument utilises over 10 personalised generic patient-reported outcome measure questionnaires, allowing patients to electronically complete questionnaires based on their specific treatments and longitudinal follow-up periods.…”

Unlocking the Power of Benchmarking: Real-World-Time Data Analysis for Enhanced Sarcoma Patient Outcomes

“…These consists of six groups, namely the MDT/SB-management, therapy-related parameters including surgery, radiation oncology and chemotherapy, the complexity of sarcoma therapy, physician-based clinical metrics (summarized as CROMS; clinician-reported outcome parameters), as well as patient-based outcome and experience measures (PROMS/PREMS). We have also introduced the sarcomaspecific instrument to longitudinally assess health-related outcomes of the routine care cycle from sarcoma patients' perspective [47,48]. To realize VBHC [49], it is our strategy to integrate the outlined data complexity by establishing real-world time data exchange, introducing an interoperable platform to benchmark outcome and to align quality with costs.…”