QOL-16. ‘Living with Meningioma’: a longitudinal survey on patient-reported quality-of-life outcomes

Abstract Meningioma is the most common primary intracranial tumor, but its impact on patient-reported quality-of-life (QOL) is incompletely understood. To address this, we initiated a prospective, longitudinal cohort study to track the QOL, emotional, employment, and financial experiences of patients living with meningioma and report baseline findings here. 86 patients were recruited between September 2024 to April 2025. Electronic surveys captured demographics, clinical data, EORTC QLQ-C30, QLQ-BN20, and FACIT-COST. Median age was 57.5 years (IQR 47.5 to 67.5), 81.9% were female, 83.1% were White, 77.1% had a Bachelor’s degree or higher, and 56.6% earned ≥$100,000/year. Meningioma WHO grades were 71.8% grade 1, 25.3% grade 2, and 2.8% grade 3. Management included surgery (81.3%, 41.4% gross total resection), radiotherapy (19.8%), and surveillance (9.3%). Time since diagnosis was <1 year for 37.5%, 1-5 years for 37.5%, and ≥6 years for 25% of patients. On QLQ-C30, physical, social, and role scores approached norms, but composite cognitive (mean 76.3, 95% CI 71.1–81.5) and emotional (mean 69.6, 63.9–75.3) scores were lower. Highest-burden items included composite fatigue (mean 30.3, 25.0-35.5), worry (mean 39.4, 32.3-46.4), feeling tired (mean 38.2, 31.9-44.4), trouble sleeping (mean 34.9, 30.7-44.8), and needing rest (mean 37.8, 28.5-41.4). On QLQ-BN20, future uncertainty (mean 28.8, 23.4-32.3), drowsiness (mean 32.1, 26.1-38.2), and family disruption (mean 31.7, 24.8-38.6) were elevated. Fatigue was common, with 13.8% reporting fatigue before treatment and 47.1% after. Of non-retired patients (70.7%), 55.2% reduced work, 45.5% had not returned to prior levels, and composite fatigue levels were associated with both outcomes (P=0.01, 0.03). 24.3% of patients experienced financial toxicity (FACIT-COST <26). At baseline, this heterogeneous cohort of patients living with meningioma reported adverse QOL impact, particularly fatigue and emotional and cognitive sequelae. Longitudinal follow-up will track these findings over time, group data based on illness trajectory, and may identify opportunities for intervention to optimize survivorship.