“I worry for the mothers. In this moment of uncertainty, I worry about the personal well-being of the parents,” Alia Ahmad, MD, said, “especially those who face very hard times psychologically, as well as financially.” Ahmad, a pediatric hematologist/oncologist in Lahore, Pakistan, was describing the additional burdens COVID-19 places on families who bring their cancer-stricken children to her hospital from all over the country. She is also enrolled in the Master of Science in Global Child Health Program (MS GCH) of the St. Jude Children’s Research Hospital Graduate School of Biomedical Sciences.
Several of Ahmad’s fellow graduate students are pediatric oncologists like her. They are working, and remotely learning, in 16 countries, from Southeast Asia to South America. They are learning how to enhance the quality and delivery of health care programs. Since the beginning of the pandemic, they have also been teaching themselves how to maintain a standard of care for childhood cancer under additional stress.
“These students have not paused from the program for a day, despite enormous workloads on the front lines during this crisis,” said Shaloo Puri, MD, associate dean and director of the graduate program. “They are innovatively applying their training to address systemic issues exacerbated by the pandemic. Their resilience under these conditions is inspiring.”
Children who have been diagnosed with cancer are medically vulnerable to the COVID-19 virus. In many lower- and middle-income countries, they are also vulnerable to the pandemic’s societal effects. Transportation restrictions, family housing shortages and crippling financial pressures have disrupted the vital chain of events that start with a timely cancer diagnosis and continue with treatment and follow-up care. Delays can be dangerous, but the most perilous consequence is the abandonment of cancer treatment, where families are unable to meet travel demands or simply give up hope.
Pascale Yola Gassant, MD, is head of oncology at St. Damien Pediatric Hospital in Port-au-Prince, Haiti. She enrolled in the MS GCH program so that she will have the right tools to better advocate for access to health care for children in Haiti.
“Haiti was already a fragile country,” Gassant said. “This new pandemic has only aggravated this situation. We aren’t prepared to deal with this or any pandemic.”
For Gassant’s patients and their families, the relatively short travel distances in Haiti seemed much longer during the first three months of the pandemic.
“Despite the few resources that we have,” Gassant said, “our will is strong to maintain the quality of oncology services with telephone follow-ups and reliance on field agents to help them watch for cases with a higher probability of abandonment.”
Gassant’s staff can usually predict which patients are at risk of abandoning treatment. “We look for disagreements between the father and mother or if they refuse to sign an informed consent agreement on the pathology,” she said. “The hospital’s psychosocial team is prepared to try interventions in these cases.”
Restrictions or increased costs for transportation can be a predictor of interrupted or abandoned treatments, but Haiti’s public transportation has been operating at full capacity since July 2020. “This is helpful, but some parents are still afraid to ride in the crowded ‘tap tap’ buses,” Gassant said.
Sanjeeva Gunasekera, MD, is a pediatric oncologist at the National Cancer Institute, Sri Lanka, which treats more than 90% of children diagnosed with cancer in the island nation.
“If there is one positive side to the pandemic,” Gunasekera said, “it would be the continuation of new methods that worked well during the lockdown, such as telephone consultations for some situations.”
Gunasekera identifies four predictors for abandonment of treatment: financial stress, distance from hospital, religious beliefs and limited support from the extended family.
“We give the patients and families as much information as possible and find ways to provide emotional, physical and spiritual support,” Gunasekera said.
Thelma Velasquez Herrera, MD, is a pediatric hematologist-oncologist and associate professor at Unidad Nacional de Oncologia Pediatrica (UNOP) in Guatemala City, Guatemala. “Guatemala City was the epicenter of the virus in Guatemala, where 69% of our country’s cases were concentrated,” Velasquez said. “Public transportation was in partial lockdown, so we modified some schemes of chemotherapy to reduce the number of ambulatory care visits. Delayed referrals resulted in more patients who required complex treatments and monitoring, and we expect a higher incidence of relapses.”
Diriba Fufa Hordofa, MD, is a pediatric hematologist/oncologist and assistant professor of pediatrics and child health at Jimma University in western Ethiopia. He is pursuing the MS GCH to improve his research and leadership skills in order to have a positive impact on the child health conditions in Ethiopia, particularly in childhood cancer programs.
“I was inspired by St. Jude Global’s commitment to reach the neediest children across the world,” he said.
Hordofa has been alarmed by the effect of rising transportation costs in Ethiopia.
“This has caused many patients to miss their appointments, and some of them to abandon treatment forever.”
Building up capacity of satellite or referral-network clinics has been a key strategy for the WHO Global Initiative for Childhood Cancer well before COVID-19 emerged. Such clinics work like “in-person telehealth” as they can serve a distant cancer center’s patients closer to their homes or provide internet or phone access to enable oncologists to observe or speak directly with patients who lack such connections at home.
Ahmad points to any disruption in Pakistan’s public transportation as a cause of abandonment of care.
“Private transportation often costs the equivalent of one month of salary,” Ahmad said. “They require loans to do this. Some parents and patients must travel in the back of cargo trucks, hidden out of sight of the highway police. Others find a way to the hospital on the back of a motorcycle. This is the cheapest option, but also very uncomfortable for the mother who holds the child and luggage while traveling for four to six hours.”
Ahmad will continue to “worry for the mothers,” with good reason. Worldwide, more than 90% of children with cancer live in low- and middle-income countries. Many of those children will not have access to adequate diagnosis or treatment, and most of them will not survive.
These graduate students’ concerns for their patients, as well as their displays of resilience, resonated with new findings from a cross-sectional study, led by St. Jude Global researchers and published in The Lancet Child & Adolescent Health. The study group analyzed survey data from 213 institutions in 79 countries to assess the global effect of the COVID-19 pandemic on pediatric cancer care, including increases in the abandonment of treatment.
“In addition to the impact on childhood cancer care delivery,” the paper’s authors wrote, “our findings emphasize that treatment abandonment, which has always been more common in low-income and middle-income countries, increased during the pandemic with a disproportionate effect in these countries.”
There are ways to save more of these children, with a little help from St. Jude, and expertise from health care professionals in the affected countries. In collaboration with St. Jude Global, the graduate school is training students in the MS GCH program to identify and generate localized evidence needed to improve child health in their countries. Scholars in this program are studying with St. Jude faculty while producing localized research that will advance care around the world.