Abstract
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 202 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 (35%) was the most commonly reported symptom followed by depression or severe anxiety (32%) and chronic fatigue (31%). Among patients, the most commonly reported challenges included delayed care (37%), long-term disability (33%), and confusion or unanswered questions about chordoma (28%). 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.
Highlights
Chordoma is a rare bone cancer that accounts for 1–4% of all bone malignancies [1]
This study provides preliminary, limited estimates of the prevalence of a wide range of selfreported symptoms and challenges that will inform the assessment of patient-reported outcomes in future clinical trials and help clinicians better manage chordoma patients’
In this cross-sectional study, we analyzed data from a survey of the chordoma community conducted by the Chordoma Foundation to determine the prevalence of selfreported symptoms experienced by chordoma patients and the chordoma-related life challenges that patients and their caregivers experience
Summary
Chordoma is a rare bone cancer that accounts for 1–4% of all bone malignancies [1]. Chordoma is a highly morbid and potentially fatal disease that involves complex medical decisions, and the low incidence of chordoma creates challenges for tailoring care. Chordoma tumors are thought to be derived from notochord remnants that may persist anywhere along the axial skeleton [1, 2]. Chordomas are generally slow growing, chemotherapy-, and radiotherapyresistant tumors that are locally invasive [1]. Population-based studies using the Surveillance, Epidemiology, and End Results (SEER) database estimate the age-adjusted incidence of all chordoma cases to be 0·08 to. Chordoma is more common in men and the incidence is highest among 50–60 years of age [1,2,3,4]
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