Understanding the Symptom Burden of Complex Skull Base Tumors From the Patient's Perspective

BACKGROUND: Symptom burden of skull base tumor (SBT) patients, especially those undergoing multimodality treatment, is poorly understood. We aim to understand symptom burden in this patient group using the core module the MD Anderson Symptom Inventory (MDASI). METHODS: Twenty-nine patients with benign and malignant SBT underwent qualitative interviews to capture symptoms at diagnosis, during, and after treatment. An expert panel of 47 members (patients, caregivers, and providers) rated identified symptoms for relevance. RESULTS: Fifty-six individual symptoms were identified. Twenty-four symptoms met criteria for inclusion; 10 were already present in the MDASI core. Fourteen new SBT-specific symptoms were selected, adding to 13 core MDASI symptoms and 6 interference items to form the provisional MDASI-Skull Base. CONCLUSIONS: SBT patients experience wide ranging symptoms. A core cluster of symptoms is frequently reported across multiple SBT anatomical subsites. Further evaluation of the provisional MDASI-SB through psychometric testing in a larger group of patients is needed.