Clinical Presentation and Outcomes for Adult Ependymoma Patients
— Categories: CERN Research Articles Posted on September 28, 2016
The Adult Ependymoma Outcomes project was initiated to capture pertinent patient information on various aspects of one’s care through self-reported experience to evaluate how this rare tumor impacts patients.
This was a catalyst in exploring disease and treatment related factors associated with outcomes in patients with disease in the brain versus spinal cord and this report provides a comprehensive update of the clinical presentation and outcomes of this large population of ependymoma patients.
This is the largest report to date of the impact of ependymoma in adults, we found there are significant symptoms and functional impairment that are observed throughout the disease trajectory. Also, the use of an online survey collecting the information we collected, is feasible and this supports focusing on specific areas that can potentially improve aspects of patient care while also helping to identify ways in educating patients and providers.