Patient-reported outcomes

• Caregivers' distress relative to their persons' delusions decreased significantly. • Caregivers' distress relative to their persons' anxiety decreased significantly. • Severity of persons' living with dementia delusions decreased significantly. • Severity of persons' living with dementia depression decreased significantly. • Total symptom severity for persons living with dementia decreased significantly.

Purpose This study aims to characterize the symptom burden and life challenges that chordoma patients and their caregivers experience. Methods In this cross-sectional study, we analyzed data from the Chordoma Foundation online community survey conducted in 2014. Frequency counts and percentages were calculated to determine the prevalence of self-reported symptoms and life challenges in the sample. We used Fisher's exact test to compare self-reported symptoms among subgroups with different disease status, tumor locations, and treatments received.