Outcomes Projects Featured in IBTA Magazine
The CERN Foundation was honored to be featured in the current issue of Brain Tumor, the official publication of the International Brain Tumour Alliance. The article included a report on CERN’s Outcomes Project and the impact of ependymoma in adults and children. The Outcomes Project, now in its fourth year, has had 280 adults and 79 kids and their parents participate.
What we have learned about adult patients
An ependymoma can occur anywhere in the brain or spine and can impact patients both physically and emotionally. Surprisingly, 33% percent of patients were unsure of the grade of their tumor, highlighting the potential lack of education related to the disease and implications for follow-up. Interestingly enough, 17% of patients reported seeing a family physician in follow-up for their ependymoma, and not a neuro-oncologist or cancer specialist, making the need to improve our knowledge and understanding of this disease a focal point for future work.
Depending on the tumor location, there was a big difference in the time patients reported symptoms prior to being diagnosed. We found that nearly 60% of spine tumor patients versus less than 30% of brain patients were symptomatic for more than a year before diagnosis. This delay in the time to diagnosis for those with spine tumors is concerning. It is not clear from the study if patients delayed in seeking care or if there was a delay in the health care team ordering imaging studies based on the type of symptoms that patients had. Having a clear understanding on the differences between locations can prove to be a resource for healthcare teams treating adult ependymoma patients. With help from medical providers, patients can detect symptoms faster, leading to an earlier diagnosis.