OBJECTIVES : GBM patients experience debilitating neurological and physical symptoms often requiring caregiver support. This study explored burden among caregivers of GBM patients.

METHODS : Real-world data were drawn from the GBM Disease-Specific Programme^TM – a cross-sectional study administered to physicians and caregivers between May-July 2016 (EU5) and March-October 2019 (US). Caregivers completed a caregiver self-completion form (CSC) that captured demographics, care provided and caregiver burden (Zarit Burden Interview [ZBI]). ZBI scores range between 0-88; higher scores indicating greater burden. The corresponding burden for a score <20 is ‘low’, 20-40 is ‘mild-moderate’, and >40 is ‘high’. CSCs were matched with corresponding patient record forms. Summary statistics were reported and descriptively analysed.

RESULTS : 304 CSCs were completed. Mean (SD) age of caregivers was 55.7 (12.08), 31% were male, 70% were a partner/spouse and 82% resided with the patient.

GBM patients with caregivers were mean (SD) age of 62.4 (12.40) years and 64% were male. Mean (SD) time since GBM diagnosis was 8.1 (6.6) months. Most patients had an ECOG score of 2 (37%) at time of data collection. 51% were on first line therapy, 55% had received both surgery and radiotherapy, and 45% had comorbidities.

Mean (SD) overall ZBI score was 32.2 (15.76), 23% of caregivers had a ZBI score of <20 (low burden), 45% of 20–40 (mild-moderate burden) and 32% of >40 (high burden).

Patients whose caregivers had high burden had a shorter mean time since diagnosis (230.1 days) compared with patients whose caregivers experienced mild-moderate or low burden (234.6 days and 305.9 days respectively). Among patients whose caregivers experienced high burden; 53% had comorbidities, 65% had an ECOG score ≥2 and 45% had received both surgery and radiotherapy.

CONCLUSIONS : Most caregivers experience substantial burden. Consideration should be given to support GBM patients and their caregivers, particularly when patients have comorbidities.