Improving Everyday Life for People with Rare Brain and Spine Cancers
, by Brittany Cordeiro, NCI-CONNECT Program Manager
Dr. Terri Armstrong shares why she chose to study rare brain and spine tumors and how her research is advancing patient quality of life.
How do we make everyday life for patients with rare central nervous system (CNS) cancers better? That’s the question that drives Senior Investigator Terri Armstrong, Ph.D., of the NCI Center for Cancer Research's Neuro-Oncology Branch. It stems from her personal experience.
As an undergraduate student at The Ohio State University, her mother and great grandmother were diagnosed with cancer. Dr. Armstrong chose to pursue oncology nursing. After graduating, she worked at a cancer hospital in Ohio and cared for her mother. Then, her two aunts were also diagnosed with cancer.
I lost them all and it had a huge impact. I wanted to do more. I wanted to learn how to do a better job at taking care of the quality of life issues that people with cancer face.
Dr. Armstrong earned a doctorate in nursing. She has cared for brain and spine tumor patients for more than 28 years.
“Neuro-oncology patients have very special needs and issues above having a cancer diagnosis,” says Dr. Armstrong, deputy chief of the Neuro-Oncology Branch and co-director of NCI-CONNECT. Her research focuses on improving patient outcomes and symptom management.
Dr. Armstrong is developing ways to accurately measure the impact of brain and spine tumors and treatments on patients. And how to lessen the impact. She is also exploring genetic data to understand underlying risk factors—something that increases the chance of developing cancer—and predictors of disease.
Studying Patient Outcomes and Risk Factors
In 2008, Dr. Armstrong was caring for a patient with a rare brain cancer called ependymoma. The encounter encouraged her to start a project to understand the qualify of life of people with ependymoma. “We thought we could just look at our database of patients with ependymoma to understand the illness. But, in over a decade of care, we only had about 120 patients with ependymoma. And we didn’t have long-term follow-up,” she explains.
Dr. Armstrong developed an online survey for people worldwide living with ependymoma to share their experiences. “We learned a lot in that first year. We had 160 participants and 60 different healthcare providers. About 50 percent of patients were unable to return to work and 75 percent were on pain medications,” she says.
Researchers also learned that 33 percent of participants were unsure of the grade of their tumor. This shows the potential lack of disease education. It also has implications in planning treatment and determining follow-up care. Moreover, researchers discovered nearly 60 percent of participants with an ependymoma in their spine experience symptoms for more than a year before diagnosis, compared to less than 30 percent of participants with an ependymoma in their brain.
With this knowledge, Dr. Armstrong and Mark Gilbert, M.D., chief of the Neuro-Oncology Branch and co-director of NCI-CONNECT, developed the Outcomes and Risk Project and Natural History Study for patients with rare CNS cancers.
The Outcomes and Risk Project includes an online survey and collects saliva samples to help researchers understand the impact and risk factors associated with the disease. And both can be done at home. “It is descriptive of the patient experience, so we can learn to better care for patients and address their needs,” says Dr. Armstrong.
Notably, the first published report on risk factors in adults with ependymoma showed that asthma and allergy effects may be more pronounced among ependymoma cases compared to gliomas overall. The report used data from the Outcomes and Risk Project.
The Natural History Study pairs with the Outcomes and Risk Project to get a complete picture of what is happening to the patient. Patients participating in the Natural History Study are evaluated at NIH and provide a tumor tissue sample.
The Natural History Study is also unique because researchers follow the same person through each stage of his or her disease. “This enables us to tell people what to expect through the course of their cancer. It can also help us anticipate, intervene and improve outcomes,” says Dr. Armstrong.
A remarkable 500 people with a brain or spine tumor enrolled in the Natural History Study, including those with very rare tumors. The Neuro-Oncology Branch research team shared over 15 abstracts at the Society for Neuro-Oncology (SNO) Annual Scientific Meeting in November 2018 based on study data. The abstracts included data on patient outcomes, symptom burden, electronic capture of information, and symptom tracking and reporting.
Dr. Armstrong is working with epidemiologists to analyze the information collected on exposures. She’s looking for genomic changes that may be associated with the risk for developing the tumor. Her research also seeks to understand the person’s experience after diagnosis. This will help providers understand the impact of the disease to better educate people on what to expect. It will also help providers develop better ways to care for both the patient and the family.
“More and more we are learning that brain and spine tumors are very individualized. We must understand the genetic alterations and the experience to improve patient outcomes,” says Dr. Armstrong.
Sharing Knowledge through NCI-CONNECT
Dr. Armstrong aims to gather enough data to provide knowledge to people living with a rare brain or spine cancer—and to ease their stress and suffering. She also wants to reach health care providers with this knowledge through NCI-CONNECT.
“NCI-CONNECT is putting the infrastructure in place for us to bring experts across centers and institutions studying these rare cancers together to talk and learn from each other,” says Dr. Armstrong. To this end, NCI-CONNECT is hosting tumor-specific workshops at NIH each year.
Moreover, in January 2019, the NCI-CONNECT Clinic launched to bring together adult patients with the same rare brain or spine tumors and their caregivers to receive special services. Providers are encouraged to partner with the NCI-CONNECT clinical care team by referring patients. The clinical care team will evaluate patients for studies and collaborate with providers on treatment and care plans.
“Our partnership with providers will allow us to share our knowledge about the issues that patients face, thereby improving care for those individual patients and patients yet to be diagnosed with these tumors,” says Dr. Armstrong.