Format

Send to

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

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

Author information

1
Department of Health Policy and Management, The University of North Carolina at Chapel Hill, 1105A McGavran-Greenberg Hall, CB #7411, Chapel Hill, NC, 27599-7411, USA. psong@unc.edu.
2
Department of Health Policy and Management, The University of North Carolina at Chapel Hill, 1105A McGavran-Greenberg Hall, CB #7411, Chapel Hill, NC, 27599-7411, USA.
3
Chordoma Foundation, Durham, NC, USA.

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.

KEYWORDS:

Chordoma; Patient-reported outcomes; Quality of life; Symptom burden

PMID:
28315176
PMCID:
PMC5509836
DOI:
10.1007/s11136-017-1544-2
[Indexed for MEDLINE]
Free PMC Article

Supplemental Content

Full text links

Icon for Springer Icon for PubMed Central
Loading ...
Support Center