“This outbreak is causing me major PTSD; life and death are on the line.”
“How can I find out if my pediatric Wilms tumor, resulting in chemo and kidney removal, put me at higher risk?”
“I am a Non-Hodgkin survivor from the ’80s with prior chemo and radiation therapy. I think we need to tell our group to take this seriously and self-isolate.”
These are only a few of the comments and questions that have recently been fielded by administrators of the Childhood Cancer Survivor Study (CCSS), led by Greg Armstrong, MD, of St. Jude Children’s Research Hospital. Launched in 1994 as the Long-term Follow-up Study, the project encompasses nearly 25,000 people who were treated as children for cancers or similar illnesses at 31 hospitals in the U.S. and Canada. All participants are at least five years beyond diagnosis.
Armstrong knows a pandemic can be terrifying to those with fragile health and compromised immune systems, such as childhood cancer survivors.
“As soon as COVID hit, we started asking ourselves two things: One, what can we do to provide resources and information for this large population of ours? And two, what can we learn from them as they go through it?” Armstrong says. “So, very rapidly, an entire research staff who’s now working from home said, ‘Hey, let’s see if we can provide some information. Let’s see if we can then learn something.’”
As survivor questions arrive, Aaron McDonald, PhD, CCSS project director, triages them and addresses many of them.
“During the COVID-19 pandemic, I have worked to keep the CCSS coordinating center operating remotely, including a 17-person call center,” he says. “This has taken a lot of logistical and technological coordination. We’ve maintained key data collection, participant correspondence, and even initiated a COVID-19 resource website and COVID-19 survey for study participants.”
“Melissa is the world’s expert in guideline-based care for survivors,” Armstrong says. “Very quickly—I mean, within a week—we had an amazing set of resources and the ability to disseminate it to 25,000 survivors. That’s pretty cool when you think about it.”
Connecting with survivors
The CCSS team then turned to the second question: “What can we learn from cancer survivors as they go through this pandemic?”
Serendipitously, in fall 2019 the group had launched a mobile-friendly web portal that allows CCSS participants to complete surveys on a secure platform.
“Over 8,500 participants have now activated their accounts,” McDonald says. “This allowed us to quickly develop and disseminate a COVID-19 survey (developed by Kevin Krull, PhD) to get an initial sense of participants’ anxiety from, and exposure to, the virus.”
“More than 2,700 participants completed the survey after one push, and we’re still collecting data,” McDonald continues. “And participants have sent emails of appreciation for the COVID-19–related resources we have provided.”
Big team, little me
“We’re going to learn very quickly about anxiety and worry among survivors,” Armstrong says. “All those questions we’ve received from them were asking, ‘What do I do? What do I worry about?’ We gave them some basic resources, but we’re also getting to the answers. Hopefully, by talking to survivors from this survey, we’re going to learn what their concerns are, and how we can care for them.”
Armstrong says none of this would have been possible without everyone working together.
“Our motto around here is, ‘Big team, little me,’” Armstrong says. “I’m a member of a big team, and we’re only going to do well if we work together. We reacted to the situation quickly, and the thing that allowed us to do that was Melissa’s team, Diane Roberts’ Together team, and an amazing staff led by Aaron, James Ford (a clinical research scientist), and Chris Vukadinovich (director of databases and systems).”
“Everyone has obviously been very stressed with the pandemic,” McDonald says. “However, my colleagues have truly risen to the challenge of working remotely and maintaining all of our core processes. Everyone has expressed gratitude for the opportunity to work at St. Jude and to still be able to contribute to our goals and mission.”