QOL-28. THE LIVED EXPERIENCE OF PATIENTS WITH CHORDOMA – A RETROSPECTIVE CASE SERIES

Abstract

Abstract BACKGROUND Chordoma is a rare malignant tumor arising from the skull base or spine with limited treatment options and poor prognosis. Patients with chordoma experience significant physical and emotional symptoms deleterious to quality of life (QOL). Current literature detailing the experiences of patients with chordoma, including end of life, is limited. Each patient’s course differs depending on tumor location, lesion size, metastatic nature of disease, and treatments. We sought to better understand the lived journey of the chordoma patients seen in our center. METHODS This was a retrospective chart review that evaluated a cohort of chordoma patients seen at our center from March 2017 to May 2023. RESULTS/ CONCLUSION A total of 18 patients were included. Average patient age at diagnosis was 53.3 years old (range: 23 to 87 years). Majority were female (67%) and 78% were White/Caucasian. Clival tumors were most common (55%), followed by spine (sacral (28%) and cervical (17%)). Nearly all tumors were recurrent (94%), almost half were metastatic (44%). All patients underwent tumor resection; the average number of surgeries underwent per patient was 2.7. Fifteen patients received radiation (83%) and sixteen patients participated in at least one clinical trial (88%). The average Karnofsky Performance Scale (KPS) at the initial outpatient visit was 80, which decreased to 72.2 by last outpatient visit. Most reported symptoms included emotional distress (78%), neuropathic pain (72%), muscular and bone pain (56%), vision changes (44%), dysphagia (39%), and headaches (39%). The average survival from diagnosis was 3.7 years (range: 2 to 23 years). Eight patients (45%) have passed, 5 of whom were enrolled on hospice at the time of death. Causes of death included seizures (1), respiratory failure due to tumor progression (3), bowel ischemia (1), medical aid in dying (1) and failure to thrive (1).