Experts analyze data to better serve ependymoma patients and families
Learning to cope with an ependymoma diagnosis and subsequent treatment effects can be overwhelming for patients and families, even with world-renowned physicians at their side.
“As medical providers, we’re focused on the treatments and outcome. We often don’t consider the psychological effect the disease can have on the patient and the parents,” says Eugene Hwang, M.D., a pediatric neuro-oncologist at Children’s National in Washington, D.C., and CERN member.
To gain a greater knowledge of how physicians can be a better resource for ependymoma families during and after treatment, Dr. Hwang and wife, Kristina Hardy, Ph.D., a neuropsychologist at Children’s National, are analyzing data from the Ependymoma Outcomes Project.
The project is an online survey for adult and pediatric ependymoma patients and the parents of pediatric patients. It focuses on quality of life questions to help researchers learn what life is like for people with ependymoma before, during and after treatment. The project is led by CERN member, Terri Armstrong, Ph.D., and is in its fourth year. To date, 280 adults and 79 kids and their parents have participated.
“The CERN Foundation is pioneering an investigational tool that is showing intriguing results,” Dr. Hwang says. In analyzing these results, he cautions that researchers are still limited in what definitive conclusions they can draw, but says the information is telling enough to evolve the perspective of medical providers.
