Introduction: Skull base chordoma can be managed by surgical intervention and adjuvant radiotherapy. As survival for this disease increases, identification of determinants of quality of life becomes an important focus for guiding comprehensive patient care. In this study we sought to measure functional outcome and quality of life in patients with skull base chordoma and to identify determinants of quality of life in these patients.

Methods: We carried out an internet-based cross-sectional survey, collecting detailed data for 83 individual patients. Demographic and clinical variables were evaluated. Functional outcomes were determined by KPS and GOSE, quality of life was measured using the short-form 36-item status survey questionnaire (SF-36), and depression was assessed by PHQ-9 questionnaire. Univariate and multivariate analysis was performed to identify determinants of the physical (PCS) and mental (MCS) components of the SF-36.

Results: Patients with skull base chordoma who have undergone surgery and/or radiation had a median KPS 90 (Range 10-100, IQR 10) and median GOSE of 8 (Range 2-8, IQR 3). The mean SF-36 PCS was 43.6 (SD 11.8) and MCS was 44.2 (SD 12.6) and both are significantly lower than norms for the general US population (P<0.001). The median PHQ-9 score was 5 (Range 0-27, IQR 8). A PHQ-9 score = 10, indicating moderate to severe depression, was observed in 29% of patients. Neurological deficit, use of pain medication, and requirement for corticosteroids were found to associate with worse SF-36 PCS, while higher levels of depression (higher PHQ-9 score) correlated with worse SF-36 MCS.

Conclusions: Patients with skull base chordoma have a lower quality of life than the general US population. The most significant determinants of quality of life in the post-treatment phase in this patient population are neurological deficits (sensory disturbance and bowel/bladder dysfunction), pain medication use, corticosteroid use, and levels of depression as scored by PHQ-9.

Patient Care: We have undertaken a measure of quality of life in community-dwelling patients with skull base chordoma and identified determinants of quality of life which can guide interventions to improve surgical and non-surgical care of these patients.

Learning Objectives: By the conclusion of this session, participants should be able to: 1) Describe the importance of assessing quality of life in patients with skull base chordoma, 2) Identify the key factors that affect quality of life in patients with chordoma, 3) Understand potential interventions that could improve quality of life in skull base chordoma patients.

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