Quality indicators for the Registry of brain and spinal cord tumours
Through its work, and by publishing annual reports, the registry wants to contribute to ensuring that all patients receive optimal and quality-assured treatment. The quality register's vision is to offer patients with brain tumors more precise, effective and personalized treatment by uniting the leading research environments in Norway within basic, translational and clinical brain cancer research.
The most important news in this year's report is more data on treatment (surgery, radiotherapy and drug treatment). Certain quality differences have not been identified, but practice variation has been described in several areas which needs to be analyzed in more detail, and which can later form the basis for quality indicators and systematic quality improvement. In the somewhat longer term, it is a goal to obtain patient-reported outcome measures (PROMs) and experience measures (PREMs).
Patient-oriented quality improvement
Identified areas for improvement
• Results show geographic variation in survival for patients with histologically verified glioblastoma. Preliminary analyzes suggest that differences in the indication position for surgery (biopsy/and or resection) are the main reason. The cancer register is working on additional analyses, and local work has been started in the Nordic Health Trust to identify any areas for quality improvement. The advisory board will follow developments and take the initiative for quality improvement work if it proves to be appropriate.
Relative survival from the time of diagnosis for patients with histologically verified glioblastoma, by region of residence, 2018-2022. From fig. 2.23 in Annual report for the Registry of brain and spinal cord tumours 2023.
• Results show that five-year relative survival for patients diagnosed with histologically verified diffuse high-grade glioma has improved little over the past 30 years. It is therefore important to offer more patients inclusion in clinical trials. The advisory board has started recording this in the new surgery report, and is considering establishing the proportion that is offered inclusion in clinical studies as a quality indicator.