Work

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

Year: 2017

Type: article

Abstract: 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.

Source: Quality of Life Research

DOI: 10.1007/s11136-017-1544-2

Authors: Paula H. Song, Hadi Beyhaghi, Josh Sommer, Antonia V. Bennett

Institutions: University of North Carolina at Chapel Hill, Chordoma Foundation

Language: English

Topic: Bone Tumor Diagnosis and Treatments

Subfield: Rheumatology

Field: Medicine

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: hybrid

Estimated APC paid: $3,890