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Purpose: This study aimed to evaluate health-related quality of life over five years in patients with malignant brain tumours providing insights to guide survivorship care

Patients/material and methods: In this prospective, longitudinal study, 180 adults with malignant brain tumours were enrolled at baseline; 80 completed the 60-month follow-up. Eligible patients had low-grade glioma (WHO I–II) or WHO grade III glioma with 1p/19q co-deletion and IDH-1 mutation. HRQoL was assessed with EORTC QLQ-C30 and QLQ-BN20, analyzed using linear mixed models and multiple imputation.

Results: Most patients presented with good performance status at baseline (ECOG 0–1, KPS 80–100%). Over five years, fatigue increased significantly and remained above baseline (mean change 5.42; p = 0.047). Cognitive (−10.2; p = 0.0002) and physical functioning (−7.9; p = 0.0004) showed sustained declines, while global health status remained relatively stable (−3.85; p = 0.14). In contrast, emotional, role, and social functioning improved and were maintained throughout follow-up. Brain tumour-specific symptoms showed both recovery and late effects: visual and motor dysfunction as well as communication deficits improved significantly, whereas drowsiness (p = 0.007) and late-onset leg weakness (p = 0.012) and bladder control problems (p = 0.0002) emerged as long-term challenges.

Conclusion: Five years after proton therapy, patients with malignant brain tumours report both functional recovery and enduring symptom burden. These findings underscore the need for structured, long-term rehabilitation and follow-up strategies to optimize survivorship care.