Symptom burden and life challenges reported by adult chordoma patients and their caregivers.

purposeThis study aims to characterize the symptom burden and life challenges that chordoma patients and their caregivers experience.

methodsIn 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.

resultsAmong the survey participants, 358 identified themselves as chordoma patients and 208 as caregivers. The majority of the patients were over 45 years (72%), male (56%), educated beyond high school degree (87%), and from North America (77%). Skull base was the most prevalent tumor location (40%). Chronic pain (38%) was the most commonly reported symptom followed by depression or severe anxiety (35%), and chronic fatigue (34%). Among patients, the most commonly-reported challenges included delayed diagnosis (37%), long-term disability (33%), and change in career or reduced ability to work (33%). For caregivers, grief (55%), delayed diagnosis (47%), and difficulty helping the patient cope with his or her disease (45%) were most common.

conclusionsOur study findings suggest a high symptom burden and life challenges among chordoma patients and their caregivers. This study provides preliminary, limited estimates of the prevalence of a wide range of self-reported symptoms and challenges that will inform the assessment of patient-reported outcomes in future clinical trials and help clinicians better manage chordoma patients' symptoms.