Eugene Hwang / Kristina

September 2016

Eugene Hwang / Kristina

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.

Data shows: Kids have meaningful lives

Children with ependymoma face unique challenges compared to other children with brain and spine tumors because of the biology of the disease. An ependymoma can occur anywhere in the brain or spine and even when successfully treated, can recur without explanation.

“Ependymoma has evolved to a chronic disease,” Dr. Hwang says. “Most patients get caught in a cycle to control the disease: therapy to stabilize it, the disease progresses and they relapse.”

This cycle can persist for years. “Over time, this level of uncertainty can affect the mental health and family dynamics of the children and their parents,” Dr. Hardy says. Yet to her surprise, project data shows that children with ependymoma are extremely resilient and adapt well to unfortunate or difficult circumstances.

“There are not high rates of depression or anxiety in kids with ependymoma and they are not miserable at school,” Dr. Hardy says. She cautions that this doesn’t mean they aren’t angry and sad at times, but most are able to cope well overall and have meaningful and happy lives. “I see this as tremendously hopeful,” she says.

Survey results also showed that parents of pediatric ependymoma patients report higher levels of sadness and anger in their children with ependymoma than the kids report. The reasoning is not clear and could affect how children with ependymoma are treated.

Physicians also often assume children will have negative experiences because of their disease and may unnecessarily treat the child for a mental health issue. “This is why our research is extremely important – we need patients and parents of patients to tell us about their experiences so we can see the deficits in how we’re treating them,” Dr. Hwang says.

Researchers also predicted that children at different ages would adjust differently to an ependymoma diagnosis. But again, survey data was surprising. “We didn’t see a robust association with age and how well the child was coping,” Dr. Hardy says. The factor that mattered more than age, was how well the individual coped with life stressors prior to the diagnosis.

“If you’re a family or individual that deals with life stressors in healthy way, you’re going to deal with ependymoma in a health way,” Dr. Hardy explains. “If you’re a family or individual that has been very distressed by negative environmental events, you’re going to find having an ependymoma a more stressful and challenging experience.”

Survey says: Education and income matter

The Ependymoma Outcomes Project is also analyzing factors that don’t often get measured in the doctor’s office: education and income. These factors affect the perceived physical and psychological well-being of pediatric patients with ependymoma and the parents of pediatric patients.

Early results indicate that ependymoma parents with less education (no advanced educational degree), both the parents and kids report worse physical outcomes than ependymoma parents with higher educational degrees. These physical difficulties included impaired upper extremities, fatigue and lack of mobility and movement.

Dr. Hwang and Dr. Hardy found these early results surprising and even confusing. “Logically, the educational level of the parent should have minimal impact on how well the patient can physically function,” Dr. Hwang says.

However, they hypothesize that ependymoma parents with less education may not be provided adequate resources, such as access to therapy and mobility or exercise equipment. They may also be less inclined to search the internet for useful information.

Researchers also discovered that ependymoma parents with higher education (advanced educational degrees) and those at lower income levels reported worse psychological factors. “These groups showed greater depression, anxiety and anger,” Dr. Hardy says. Higher educated parents of kids with ependymoma also worried their kids peer relationships were worse.

Dr. Hardy says she was struck by the magnitude of the associations in the data. “They were stronger than I would have predicted.” And at this point, researchers can only speculate on the reasons education and income impact physical and psychological factors.

For example, for parents of pediatric ependymoma patients with less economic resources, the stress of the medical costs of treating the disease and subsequently, how they’re going to provide and care for other children or family members, especially if they will lose income by taking time off work, could be reasons for their psychological distress. While ependymoma parents with higher education, may be over educating themselves about the consequences of the disease.

Next step: Find definitive answers

Dr. Hwang and Dr. Hardy are compelled by the early results of their analysis of the survey data. They’re also anxious to get definite answers.

“We need to ask more questions to confirm these findings,” Dr. Hardy says. “We need to know if these associations are absolute, so as medical providers we can prevent negative outcomes.”

“Ultimately, we could alter our approach in the clinic to provide early interventions,” Dr. Hwang adds. He suggests a brief questionnaire, for example, could help identify upfront the group the pediatric ependymoma patient and the parents associate with. Then, the best resources can be devoted to them to improve their quality of life.

The key to continuing the Ependymoma Outcomes Project is funding. Dr. Hwang and Dr. Hardy are grateful to the CERN Foundation donors and contributors and hopeful that their research will continue to impact the ependymoma community, giving them a chance to better the lives of pediatric ependymoma patients and their families.

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