The first ever large-scale analysis of symptoms and life challenges caused by chordoma was recently published in the Quality of Life Research journal, opening the door to improved understanding and management of the disease.
It draws upon the feedback of more than 700 patients, caregivers, and family members who responded to a 2014 Chordoma Community Survey issued by the Foundation. In that survey, we set out to learn more about the journeys of our community members – from diagnosis and treatment to everyday life challenges. Thanks to insights and answers provided by participants, what emerged was the most comprehensive picture to-date of the real-life experience of living with chordoma.
Survey responses were analyzed by co-authors Paula Song, Ph.D., a member of the Foundation’s Board of Directors and Chair of our Patient Services Committee, and CF Executive Director Josh Sommer. The resulting data characterized a wide range of medical, emotional, and practical issues facing patients and caregivers. These issues are outlined in detail in the paper, and a smaller subset of key takeaways are highlighted in an infographic (below) produced by the Foundation.
This study, the largest of its kind in chordoma literature:
- helps newly diagnosed patients and caregivers know what to expect
- helps clinicians better understand and manage patients’ symptoms
- helps inform the design of future clinical trials
It also informs our efforts to continually refine and improve our programs to meet your needs.
Thank you to everyone who participated in the survey and shared your experiences with us. Without your input, this critical new addition to the chordoma literature would not have been possible.