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

Qual Life Res. 2017 Aug;26(8):2237-2244. doi: 10.1007/s11136-017-1544-2. Epub 2017 Mar 17.


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.

Results: Among 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.

Conclusions: 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.

Keywords: Chordoma; Patient-reported outcomes; Quality of life; Symptom burden.

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Aged, 80 and over
  • Caregivers
  • Chordoma / psychology*
  • Cross-Sectional Studies
  • Female
  • Humans
  • Male
  • Middle Aged
  • Quality of Life / psychology*
  • Young Adult