Understanding the unmet needs of patients with brain metastases referred for stereotactic radiotherapy and their caregivers; a prospective cohort study

Background Brain metastases (BMs) affect >30% of patients with cancer. Beyond survival, quality of life (QoL) and disease progression are critical concerns for both patients and their caregivers. We present the design of COIMBRA (Cohort for Patient-Reported Outcomes, Imaging, and Trial Inclusion in Metastatic Brain Disease), clinical characteristics, and pre-radiotherapy QoL data for patients and caregivers. Methods COIMBRA is an observational, prospective, single-center cohort at UMC Utrecht, the Netherlands, focusing on BMs patients planned for (fractionated) stereotactic radiotherapy (SRS) and their caregivers. We collected clinical characteristics, imaging and QoL (patient and caregiver) data via patient-reported outcome (PRO) questionnaires. PROs include the EORT QLQ-C30, BN20, EQ-5D-3L (including VAS), CFQ, HADS, MFI and CSI. PROs were compared with reference values from the literature for healthy, cancer, and brain tumor populations. Results From April 2019 to April 2023, 377 patients (50.4% male, median age 66 years) who received stereotactic radiosurgery, were included. 276 patients and 115 caregivers consented to PROs. Patients reported lower QoL compared to healthy individuals and primary brain tumor patients, with worse role- and cognitive functioning compared to patients with cancer. Pre-radiotherapy, 1/3 of the caregivers felt overwhelmed. Almost 40% of them report signs of anxiety, which is less than caregivers of cancer or primary brain tumor patients. Conclusions These data from a large cohort of patients with BMs and their caregivers underscore the unique clinical profile of this vulnerable population. These findings highlight the urgent need for targeted support systems to address unmet needs of both patients and caregivers.