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17-03-2017 | Uitgave 8/2017 Open Access

Quality of Life Research 8/2017

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

Quality of Life Research > Uitgave 8/2017
Paula H. Song, Hadi Beyhaghi, Josh Sommer, Antonia V. Bennett
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Electronic supplementary material

The online version of this article (doi:10.​1007/​s11136-017-1544-2) contains supplementary material, which is available to authorized users.
Parts of this paper were presented in an abstract and poster forms at the 2016 International Chordoma Research Workshop on July 2016, in Boston.
An erratum to this article is available at http://​dx.​doi.​org/​10.​1007/​s11136-017-1594-5.



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


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.


Among 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.


Our 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.

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