NCOG-39. Patient-reported measures in the Swedish national quality registry for brain tumors and towards clinical care

The national Swedish brain tumour registry (SBTR) was launched in 1999 and monitor care and treatment based on quality indicators from the national guidelines and standardized care pathways. The overall aim is to support a high standard and equitable national care in the management of patients suffered from tumors in the CNS as well as to facilitate research. An important component is the feed-back of data to all involved stakeholders, such as patients, healthcare professionals, clinics and regulatory authorities. Since 2016, patients directly contribute to the SBTR with patient-reported outcome (PROM) and experience measures (PREM). This study describes patient-reported data in the SBTR up to one year after primary surgery. Data were retrieved from the SBTR for adult patients with glioma or meningioma undergoing primary surgery 2015 – 2024 and completed at least one of three patient-reported measures 3–12 months postoperatively. PROM included the EORTC QLQ-C30, the brain tumor-specific QLQ-BN20, and the Mental Fatigue Scale. PREM were assessed using a 52-item national survey adapted for brain tumor patients. An invitation to patients was sent by postal mail, email or SMS according to patient preferences. Response rates vary from 31% to 65%, where patients with high-grade glioma had the lowest response rate at the 12-month follow-up. Data can now be visualized at both individual and group-level for different stakeholders in an Individual Patient Overview, and interactive reports for the clinic and a bi-annual official report. For this study, patient-reported data will be presented descriptively in three groups reflecting patient prognosis and care pathways, glioma WHO grade 1 – 2, glioma WHO grade 3 – 4 and meningioma.