With financial support from Foundation against Cancer, the Belgian Cancer Registry (BCR) evaluated the quality of care and outcomes for patients diagnosed with one of two types of sarcoma, namely gastrointestinal stromal tumours (GISTs) and bone sarcomas in Belgium. This is the first time the care of patients with a sarcoma has been described at the national level. Sarcomas are a heterogeneous group of rare tumours that require a specific approach from a specialised team of doctors due to the difficulty of diagnosis (see previous BCR literature review).
In collaboration with a group of clinical experts, a list of relevant indicators was drawn up to describe the diagnosis, treatment and survival of patients with sarcoma. These indicators were calculated for GIST and bone sarcomas, both at the national level and, for GIST, at the level of individual Belgian hospitals. For GIST, the association between patient volume and indicator result was also studied. Soft tissue sarcomas could not be included in this study due to limitations in the available data.
To come to these results, BCR used cancer registration data and administrative health data, including reimbursement data from health insurance obtained from the Agence InterMutualiste (AIM) (the agency responsible for collating data from Belgium’s seven health insurance funds) and vital status data from the Crossroads Bank for Social Security (CBSS).
For GIST, the results of this study were compiled into a general report. In addition, all hospitals in Belgium providing care to patients with GIST received an individual feedback report. Based on this feedback report, the different centres could evaluate their own results and compare them with anonymized results from other hospitals in Belgium (benchmarking).
A peer-reviewed article on the care pathway of patients with a gastrointestinal stromal tumor (GIST) is available.
For bone sarcomas, a general report was prepared on the epidemiology of these tumours, as well as the care pathway and outcomes of patients. Our study identified important limitations in the population-level data currently available to evaluate the care trajectory of these patients. Recommendations were formulated to support the collection of standardized and structured data. This will enable comprehensive future analyses and monitoring of care for this heterogeneous patient population, with the ultimate goal of improving care for every patient.
