Longitudinal Psychological Distress After Malignant Brain Tumor Diagnosis: A Multilevel Analysis of Patients and Their Caregivers

Objective: Malignant brain tumors are associated with debilitating symptoms and a poor prognosis, resulting in high psychological distress for patients and caregivers. There is a lack of longitudinal studies investigating psychological distress in this group. This study evaluated fear of progression (FoP), anxiety and depression in patients and their caregivers in the 6 months following malignant brain tumor diagnosis.

Methods: This prospective, observational study assessed FoP (FoP-Q-SF[P]), anxiety and depression (HADS) at diagnosis (T0) and after three (T1) and 6 months (T2) in patients with malignant brain tumors (primary, secondary) and their caregivers. Multilevel analyses were used to examine changes over time and differences between patients and caregivers, while accounting for the interdependence in their distress values.

Results: Seventy-one patients and 68 caregivers were included in the analysis. Throughout the study period, over 50% reported clinically relevant FoP, almost 50% reported clinically relevant anxiety, and over 30% reported relevant depression. Over all time points, caregivers reported significantly higher anxiety and depression than patients. Anxiety decreased between T0 and T2 in both groups. Exploratory analyses showed that female sex was associated with higher anxiety, and older age with higher depression. No significant predictors were identified for FoP.

Conclusion: A substantial number of patients and caregivers experience clinically relevant psychological distress in the 6 months following a malignant brain tumor diagnosis. Caregivers are particularly distressed, reporting higher anxiety and depression. Integrating psycho-oncological assessments and interventions for both patients and caregivers into clinical care is critical to address the psychological distress associated with malignant brain tumors.