Per Fessé, Linda Åkeflo, Karin Ahlberg, Emelie Blomqvist, Per Fransson, Ingrid Kristensen, Kristin Kunni, Ulrica Langegård, Emma Ohlsson-Nevo, Katarina Sjövall
In this scoping review, PROs were commonly collected but inconsistently prespecified, often delayed, and incompletely reported. Registration trials should strengthen PRO prespecification, reduce publication delay, and adhere to missing data reporting standards.
PURPOSE: Long-term patient-reported outcomes after Proton beam therapy (PBT) remain insufficiently described for patients with benign intracranial and seller-region tumors. The aim of this study was to evaluate health-related quality of life (HRQoL) and brain tumor-specific symptoms over five years after PBT in a primarily meningioma cohort.
METHODS: In this prospective cohort study, adults treated with PBT completed the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 and QLQ-BN20 questionnaires from baseline through 5 years. Mixed models for repeated measures estimated mean scores and change from baseline with 95% confidence intervals. Baseline-to-five-year change analyses included participants with available data at both time points. Exploratory analyses evaluated associations between sociodemographic factors and changes over five-years.
RESULTS: Seventy-seven of 126 participants (61%) completed the 5-year assessment. Global health status did not change significantly, whereas the QLQ-C30 summary score declined modestly. Clinically meaningful worsening was observed for fatigue and insomnia, with smaller increases in pain, dyspnoea, and constipation. Physical and cognitive functioning declined, while emotional functioning improved. On the QLQ-BN20, hair loss increased to a clinically meaningful extent and drowsiness, bladder control difficulties, motor dysfunction, communication deficits, and leg weakness worsened, whereas headaches decreased. No associations were observed between the investigated sociodemographic factors and change in fatigue or insomnia.
CONCLUSIONS: Five-year outcomes demonstrated a mixed pattern with stable global health status despite a modest decline in overall HROoL and worsening in several symptom and functioning domains. Clinically meaningful increases in fatigue and insomnia, alongside smaller functional and brain tumor-specific changes, support structured long-term follow-up and rehabilitation. These findings reflect long-term outcomes following PBT, while treatment-specific contribution remains uncertain.