COVID-19 has brought unprecedented change to St. Jude Children’s Research Hospital, including limiting campus access to active patients with urgent medical needs. To reduce the risk to current patients, long-term pediatric cancer survivors are not returning for checkups. This includes those in the After Completion of Therapy (ACT) Clinic, as well as participants in St. Jude LIFE, a study that brings childhood cancer survivors back to campus for health screenings throughout adulthood.
When it became apparent that survivors wouldn’t be able to come back to campus for a while, St. Jude began creating resources about COVID-19–related health risks.
“Many survivors have health issues related to their cancer or its treatment, some of which have been linked to a higher risk of having a severe course of COVID-19,” says Melissa Hudson, MD, Cancer Survivorship Division director. “We are particularly concerned about our older survivors with chronic heart and lung disease.”
Guidelines for survivors
Hudson collaborated with national and international peers to develop a statement to provide guidance to survivors related to risk and preventive measures for COVID-19. She co-chairs the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG), which develops global guidelines for the long-term follow-up of childhood, adolescent and young-adult cancer survivors.
“Dr. Hudson made a tremendous effort, in concert with others, to develop resource information and materials for our survivors,” says Greg Armstrong, MD, of Epidemiology and Cancer Control. “She led the effort to develop the first national health surveillance guidelines for childhood cancer survivors over 15 years ago. And now amid COVID, she is an expert at being able to say, ‘Well, what do survivors need during this time?’”
The Together website team at St. Jude used information created by Hudson, IGHG and other health agencies to create resources for patients, long-term survivors and Childhood Cancer Survivor Study participants.
“Together has done a fantastic job of synthesizing information about the virus from agencies like the Centers for Disease Control and Children’s Oncology Group into simple, easy-to-understand summaries,” Hudson says. “Importantly, the Together team provides information about medical concerns as well as resources to address the distress, anxiety and uncertainty that our patients, long-term survivors and their families may be experiencing.”
Care plans in place
Hudson and her team are communicating with survivors regularly via phone calls, emails and texts, listening to their concerns and making sure survivors can access needed care and resources.
“Our first efforts were to assure that survivors had up-to-date Survivorship Care Plans in the event they contracted COVID-19,” Hudson says.
The Survivorship Care Plan outlines a survivor’s personal information about cancer treatment and associated health risks, recommended health screening, and active health problems.
“We emphasize to our survivors the importance of sharing their care plans with the local health care team who may not be familiar with how childhood cancer treatment can affect long-term health,” Hudson says.
Alia Zaidi, MD, is leading a team of 10 clinical research associates and two clinical research assistants to pull together the data and distribute Survivorship Care Plans.
“Cancer survivors are clearly a vulnerable population for COVID-19,” Zaidi says. “The need for re-establishing patient communication becomes an essential service for cancer survivors.”
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Before COVID-19, survivors received all updates on their health evaluations as printed documents sent by courier or registered mail.
“The only option was to quickly establish a system for electronic communication,” Zaidi says, “making sure it was something feasible for the majority, if not all, patients—and that it would allow us to send protected health information in a HIPAA-compliant fashion.”
Zaidi’s team worked from home, partnering with St. Jude Clinical Informatics to establish the new electronic patient communication process.
“All visit-specific patient evaluation documents can now be collated in a single digital version for upload on a St. Jude portal for viewing and download by the patient,” Zaidi says. “This new process not only provides us with an efficient means of patient communication, but it will save significant department dollars that were being spent on courier and registered mail.”
Return to campus
When will long-term survivors be able to return to campus? Hudson says her team is working to prioritize ACT patients who have the most urgent clinical needs—those with serious health concerns that are best managed by St. Jude clinicians.
The survivorship team is working with survivors and families to determine the best options for local care until it is safe to open the ACT Clinic. That entails identifying community providers and resources to assure that survivors have access to medications and services.
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Telehealth is being pursued as a possible method for interacting with ACT patients, says Lisa Walters, an advanced practice provider who works on the survivorship team.
“The ACT team is systematically evaluating patients who would benefit most from coming on campus, and those who would benefit more from being able to stay home, not traveling, and having good provider interaction through the telehealth process,” Walters says.
But there are barriers, including state professional licensing requirements.
“Currently, our providers would need to be licensed in every state where patients reside in order to evaluate them by telemedicine,” Walters says.
Suzette Stone, PhD, director of the Center for Advanced Practice Providers, is leading the charge to get licenses in states with the highest percentage of patients.
Despite the pandemic disruption, the ACT team has embraced the opportunity to re-evaluate routine clinic procedures and explore new initiatives.
“We hope that when COVID-19 is behind us, we will emerge with stronger partnerships with local health care teams that will facilitate the transition of care when survivors graduate from ACT,” Hudson says.