What started as a conversation among a Facebook group of pediatric oncologists at the pandemic’s start has now grown into the largest registry of children with cancer and COVID-19 in the country, providing invaluable information for healthcare providers grappling with the effects of the virus on their patients.
“People started posting in the Facebook group about caring for children with cancer and COVID-19, asking what they should do,” said Children’s of Alabama pediatric oncologist Emily Johnston, M.D., who, with her colleagues Julie Wolfson, M.D., and Jenn Levine, M.D., of Cornell Medical Center in New York, helped found the Pediatric COVID-19 Cancer Case (POCC) Report. “There were no data, no guidelines, nothing,” Dr. Johnston said. The registry, which is now housed at the University of Alabama at Birmingham, is led by Drs. Johnston and Wolfson.
The growth has been “miraculous,” Dr. Johnston said. “We started these conversations in March 2020 and had our first patients entered by the end of April, representing an incredible pace.” Today, the registry has data on more than 1,400 children from more than 100 sites. “The other hospitals are participating in the registry because it’s the right thing to do for our community and our patients,” she said. “The national collaboration has been really impressive.”
One goal of the registry is to provide real-time information to pediatric oncologists. The team sends regular data briefs to every pediatric cancer site in the country with updated summaries.
In December 2021, the group published its findings on 917 children from 94 U.S. hospitals in the prestigious Journal of Clinical Oncology. They found these children had a high risk of severe infection, with one-third admitted to the hospital and 9 percent to the ICU. They also found nearly half (45 percent) had their cancer therapy changed because of the infection. Fourteen (1.5 percent) died from COVID-19.
The children most likely to develop severe disease with COVID-19 infections were age 11 or older; those with health conditions in addition to their cancer; and those with neutropenia (low white blood cell count) or hematologic cancers. Hispanic children were most likely to be infected and to have their cancer therapy modified, even though they didn’t have more severe illness. This, Dr. Johnston said, mirrors the racial and ethnic disparities seen in the wider population with COVID-19.
She and her colleagues are working on understanding why Hispanic children were more likely to have their treatment changed. “This may reflect a combination of systemic issues, biological issues, and even our innate biases. It’s probably a combination of all these, and definitely something we need to tease apart to figure out why this is happening.”
Dr. Johnston and her team are now collecting data on the vaccination status of all patients, including those in the registry, and the impact of vaccination on infection. They also have a small grant to delve deeper into the data, including to assess how COVID-19 in children with cancer has changed over the course of the pandemic and determine the impact of the virus on long-term health.
An important area they hope to research focuses on the impact of treatment changes. “We’ve had such incredible improvements in survival in the last several decades in part because we’ve gotten more treatments and escalated treatment, including giving more intense, frequent chemotherapy,” Dr. Johnston said. “That’s led to improved survival. We get very nervous when we have to hold or modify chemotherapy.”
The two Drs. Johnston and Wolfson said they feel a calling for the work. “We felt it was our duty to use our research infrastructure for this public health purpose,” said Dr. Wolfson. “Hopefully, we’ll be able to help patients and clinicians as much as possible.”