Copenhagen longitudinal study on quality of life in a young adult population with gliomas

Abstract Background Patients diagnosed with glioma in the brain are prone to lowered quality of life (QoL). The risk of neurological symptoms and emotional burden may restrict participation in everyday life.The glioma diagnosis is considered chronic with a limited overall survival rate, which is particularly concerning for adolescent and young adults (AYA). Methods In a longitudinal and prospective study with consecutive inclusion, we followed the QoL in glioma patients aged 18–35 ( n = 46). Assessment was conducted online with the self-report measures Functional Assessment of Cancer Treatment-Brain (FACT-Br) and Major Depression Inventory (MDI). The assessment was performed consecutively pre- and postoperatively four times per year. Results On group level we found that the higher burden of pain, lack of energy and greater burden of seizures and decreased subjective cognitive functioning, significantly predicted the total level of QoL. Tumor grade, time since surgery, sex or number of neurosurgical interventions were not found to significant predict the overall QoL. Conclusion The results underline the importance of optimizing the seizure control and treating pain sufficiently as well as assessing fatigue and cognitive functions. By routinely screening the patients with a standardized QoL-questionnaire, unmet needs can be clarified, and rehabilitation be optimized to prevent deterioration in QoL.