BackgroundGlioma patients suffer from a wide range of symptoms which influence quality of life negatively. The aim of this review is to give an overview of symptoms most prevalent in glioma patients throughout the total disease trajectory, to be used as a basis for the development of a specific glioma Patient Reported Outcome Measure (PROM) for early assessment and monitoring of symptoms in glioma patients.MethodsA systematic review focused on symptom prevalence in glioma patients in different phases of disease and treatment was performed in MEDLINE, CINAHL and EMBASE according to PRISMA recommendations. We calculated weighted means for prevalence rates per symptom.ResultsThe search identified 2.074 unique papers, of which 32 were included in this review. In total 25 symptoms were identified. The ten most prevalent symptoms were: seizures (37%), cognitive deficits (36%), drowsiness (35%), dysphagia (30%), headache (27%), confusion (27%), aphasia (24%), motor deficits (21%), fatigue (20%) and dyspnea (20%).ConclusionsEight out of ten of the most prevalent symptoms in glioma patients are related to the central nervous system and therefore specific for glioma. Our findings emphasize the importance of tailored symptom care for glioma patients and may aid in the development of specific PROMs for glioma patients in different phases of the disease.Electronic supplementary materialThe online version of this article (10.1007/s11060-018-03015-9) contains supplementary material, which is available to authorized users.

Background and Purpose: Symptoms in glioma patients are distinctly different from symptoms in patients with other types of cancer and have a high impact on quality of life. In this study, a stepwise approach of developing a glioma module for assessment of symptoms, based on a Dutch adapted and validated version of the Edmonton Symptom Assessment System, is described. Methods: Three phases of instrument development were conducted: a systematic literature review and a focus group interview with experts were performed (phase I) to generate relevant symptoms and construct a preliminary module (phase II). In phase III, the preliminary module was evaluated (n = 25) and pretested (n = 45) in glioma patients representing all phases of the disease. Results: Our glioma module contains 11 generic and 6 neurologic symptoms. Patients completed the glioma module in a median of 5 minutes, and 56% of the patients required some assistance to complete the instrument. Conclusion: The glioma module has initial validity and will benefit from prospective validation in a larger cohort of patients with glioma.