To better understand the impact of an ependymoma diagnosis and subsequent treatments on patients, their families and the community,
Terri Armstrong, Ph.D., is leading Patient Outcomes and Symptom Management Projects for the CERN Foundation.
Of her most successful projects is the
Ependymoma Outcomes Project, an online survey for adult and pediatric ependymoma patients, and the parents of pediatric patients. The project, in its fourth year, has had 280 adults and 79 kids and their parents participate.
The project questionnaire is allowing Dr. Armstrong to learn what life is like for people with ependymoma before, during and after treatment. And it’s yielding compelling results.
Dr. Armstrong has learned that about 50% of adult ependymoma patients who have completed treatment and have stable disease or their disease is in remission do not go back to work. This was a surprising and telling result, Dr. Armstrong explains, as most adult patients with low-grade disease live a long life post-treatment, so not returning to work can have a great impact on their well-being.
Dr. Armstrong and her team have also discovered that there is a large percentage of adult ependymoma patients who continue to have symptoms even though they’re done with treatment and their disease is stable or in remission. Survey results showed almost a third of adult patients are on pain medications or narcotics, and about 30% report feeling depressed.
