The reality of pediatric long COVID – Psychologists are playing an integral role in research and interventions to support children in their recovery

The reality of pediatric long COVID - Psychologists are playing an integral role in research and interventions to support children in their recovery


Last updated: April 21, 2023

Lucas Denault, a high school senior from Littlestown, Pennsylvania, woke up one day in January 2021 with a stuffy nose. He tested positive for COVID-19, but felt better by dinnertime. Then, 10 weeks later, everything changed.

In a matter of days, Denault went from running track, lifting weights, playing basketball, serving on the student council, and socializing with friends to barely being able to leave his bed. With support from psychologists and other providers at the Kennedy Krieger Institute’s Pediatric Post-COVID-19 Rehabilitation Clinic in Baltimore, he has spent the past two years recovering from extreme fatigue, brain fog, and other hallmark symptoms of long COVID.

Long COVID, which affects an estimated 65 million people worldwide, can last for weeks, months, or years and involve a wide range of organs, including the heart, lungs, brain, blood vessels, and gastrointestinal tract. The condition is still poorly understood in adults; in children and teenagers, researchers know even

“So many of the studies that have been done on the long-term effects of COVID have started with studying adults,” said Rachel Gross, MD, an assistant professor of pediatrics and population health at New York University (NYU)’s Grossman School of Medicine and principal investigator of the clinical science core for the National Institutes of Health (NIH) Researching COVID to Enhance Recovery (RECOVER) Initiative. “There’s been a lot less research focused on children, so there really are many questions that remain.”

Though most young patients avoid serious acute COVID-19 infections, many are suffering from ongoing or returning symptoms of the virus or new problems that began days or weeks after their initial recovery. These issues can require treatment from a range of providers, including pulmonologists, cardiologists, physical therapists, and neuropsychologists. But formal guidance on how to treat the syndrome, which encompasses more than 200 symptoms, takes time to develop, forcing many providers to improvise.

Absent official guidelines, psychologists have been aiding large-scale research efforts and—in the meantime—pooling their knowledge on best practices for treating the neuropsychological, behavioral, and mood-related symptoms of pediatric long COVID. They are using insights from research conducted so far, as well as adapting strategies that work with related conditions, including concussion, chronic pain, and chronic fatigue.

“At the end of the day, we’re hoping to serve our patients and families and make meaningful recommendations for them,” said Colleen Hess, PhD, a neuropsychologist at Johns Hopkins All Children’s Hospital who has treated children and adolescents with long COVID throughout the pandemic. “Even without knowing the specific etiology of long COVID, we can still support children in their recovery.”

What we know

Long COVID, also called long-haul COVID or postacute sequelae of SARS CoV-2 infection (PASC), is not a single illness but rather a collection of conditions that may result from the viral infection itself or the inflammation it triggers throughout the body. According to the U.S. Centers for Disease Control and Prevention (CDC), the syndrome can be identified starting four weeks after COVID-19 infection (Long COVID or Post-COVID Conditions, CDC, 2022).

Children and teenagers face similar symptoms to adults, with fatigue, shortness of breath, trouble sleeping, abdominal pain, dizziness, headaches, memory loss, and difficulty concentrating among those most commonly reported (Berg, S. K., et al., Lancet Child & Adolescent Health, Vol. 6, No. 9, 2022; Morrow, A. K., et al., Current Pediatrics Reports, Vol. 10, No. 2, 2022). One of the most debilitating issues, postexertional malaise, can cause patients significant exhaustion following a minor physical effort, such as walking up a flight of stairs. After Denault underwent a cardiac stress test with a pediatric cardiologist in Harrisburg, Pennsylvania, he could hardly walk out of the doctor’s office and spent the next several days in bed.

“For the kids who are experiencing long COVID symptoms, it’s often really debilitating,” said Christine Koterba, PhD, ABPP, a pediatric neuropsychologist at Nationwide Children’s Hospital in Columbus, Ohio, and a clinical assistant professor of pediatrics at The Ohio State University who has helped compile a list of informal guidelines for psychologists treating long COVID. “They’re missing a lot of school, missing out on preferred activities, and in a lot of cases, it can be really hard for them to find providers who know how to address their symptoms.”

Even calculating the prevalence of the syndrome in children has been a challenge. Early estimates ranged from 4% to 66% of those infected with the virus, but recent calculations fall closer to 10% (Zimmermann, P., et al., The Pediatric Infectious Disease Journal, Vol. 40, No. 12, 2021; Radtke, T., et al., JAMA, Vol. 326, No. 9, 2021).

Even so, with more than 15 million reported cases of COVID-19 among U.S. children, a sizable number is likely suffering from long COVID (Children and COVID-19: State-level data report, American Academy of Pediatrics, 2023). Older children and teenagers appear to be more susceptible to long COVID than younger children, but psychologists speculate that may be because they are better at noticing and describing their symptoms.

One barrier to studying long COVID in children: Many never received a positive polymerase chain reaction (PCR) test. Early in the pandemic, access was limited, and research suggests that up to 90% of COVID-19 cases among children may be missed (Dattner, I., et al., PLOS Computational Biology, Vol. 17, No. 2, 2021; Langeland, N., et al., Lancet Regional Health Europe, Vol. 5, 2021).

NIH’s RECOVER Initiative is addressing that gap by enrolling children with long COVID symptoms, even if they were never tested for COVID-19, then verifying past infection using serological testing and other methods. The pediatric study, which began in March 2022 and aims to recruit 19,500 families, also includes infants, children, teenagers, and young adults who had COVID-19 but did not develop long COVID, as well as a group with no history of COVID-19 infection.

Data collection, which includes surveys, biospecimens, and clinical tests over a period of four years, is geared toward solving some of the crucial unknowns around pediatric long COVID. One major question: Why do some children get long COVID and others do not? For example, early evidence from outside RECOVER indicates that children with a history of attention-deficit/hyperactivity disorder (ADHD) or certain conditions affecting the immune system may face an elevated risk (Merzon, E., et al., International Journal of Environmental Research and Public Health, Vol. 19, No. 10, 2022).

RECOVER also aims to characterize the course of the syndrome, including any lasting effects on mental health, cognitive functioning, and development—and to separate those from challenges related to social isolation and learning disruptions.

“For instance, we’re exploring to what extent children’s anxiety and depression symptoms are related to long COVID, versus background effects of the pandemic that all kids may be at risk for,” said Richard Gallagher, PhD, a pediatric psychologist and neuropsychologist at NYU who is part of the RECOVER project.

To that end, Gallagher, Gross, and their colleagues across the United States are collecting data on anxiety and depression, behavior control, attention, memory, executive function, language development, spatial reasoning, and more. RECOVER researchers are studying these outcomes, Gallagher said, because prior coronavirus outbreaks, including severe acute respiratory syndrome (SARS) and Middle East respiratory syndrome (MERS), were linked with increased cognitive, behavioral, and emotional deficits among youth.

The large-scale initiative has absorbed several other efforts, including the MUSIC Study, which aims to characterize a related condition, multisystem inflammatory syndrome in children (MIS-C), and the GRAVID study (Gestational Research Assessments for COVID-19), which is monitoring a group of children who were exposed to COVID-19 in utero. Early findings from outside RECOVER suggest that these infants may face an increased risk for neurodevelopmental disorders during their first year of life (Edlow, A. G., et al., JAMA Network Open, Vol. 5, No. 6, 2022).

A gradual return

For children and adolescents with long COVID, specialized treatment can be hard to access. Fewer than 20 specialized pediatric COVID clinics are in operation across the United States, and many have months-long waitlists. More commonly, clinics that treat other conditions with overlapping symptoms, including pulmonary rehabilitation and chronic pain clinics, open their doors to patients with long COVID. But in many cases, families must navigate a web of individual providers to gain access to the care their child needs.

Treating long COVID in an integrated care setting tends to best serve patients due to the syndrome’s wide range of symptoms. At Children’s National Hospital in Washington, D.C., the Pediatric Post-COVID Program is staffed with specialists from infectious disease, physical medicine and rehabilitation, and psychology, who provide assessment and weekly care to children with long COVID. For many of their patients, treatment involves physical and occupational therapy to regain strength and aerobic capacity. Patients may also receive referrals to neuropsychologists, cardiologists, pulmonologists, and other providers, depending on their symptoms.

Psychologists play a critical role in the healing process, said psychologist Linda Herbert, PhD, who works with children and families at the Children’s National clinic. Their role includes providing psychoeducation, helping patients manage anxiety and depression related to their diagnosis, teaching pain management strategies, supporting good sleep hygiene, and helping families create a healthy routine.

For Denault and his family, support from psychologists was a key part of staying positive during the years-long healing process.

“This has been such a long road to recovery, and it’s taken a lot of hard work, perseverance, and the right mindset,” said Karin Denault, Lucas’s mother.

The Denaults attended Kennedy Krieger’s Comfort Ability Workshop, a program that uses cognitive behavioral therapy (CBT) to help young patients and their parents or caregivers learn to manage a chronic illness and improve functioning. Psychologists also use CBT to teach kids and their families about the mind-body connection, including how anxiety can exacerbate physical symptoms, as well as the importance of pacing.

“For kids who were high-achieving academically and involved in many different activities, it can be really hard to grasp what pacing means and to recognize how to slow down,” said Rowena Ng, PhD, a neuropsychologist at Kennedy Krieger who coauthored a consensus statement on treating long COVID in children and adolescents (Physical Medicine & Rehabilitation, Vol. 14, No. 10, 2022).

Crucially, pediatric psychologists also help families strike a balance between recognizing that children with long COVID are facing real and often severe symptoms—and that a gradual return to functioning is both possible and ideal.

“We want to send the message that while this is debilitating and scary and your life feels different, let’s not think about it as an emergency,” said Amy Hahn, PhD, a pediatric psychologist at Nationwide Children’s.

She and her colleagues, including Koterba and pediatric neuropsychologist Kristen Hoskinson, PhD, have compiled and are working to disseminate a set of recommendations for psychologists treating long COVID. The guidelines emphasize the importance of a gradual return to daily routines. That advice runs contrary to the approach adopted by many providers early in the pandemic, they said, which tended to be overly restrictive, such as barring kids indefinitely from school and other activities.

“Families of children with long COVID often describe how it has dramatically changed their lives,” Koterba said. “We want to shift the narrative so that long COVID becomes more of a bump in the road, rather than a life-changing diagnosis.”

Succeeding at school

Given the relatively high rate of children and adolescents reporting cognitive symptoms, neuropsychologists also play a key role in assessing and treating long COVID. That typically starts with a series of tests to evaluate language, attention, memory, fine motor skills, and academic performance, said D. J. Bernat, PhD, a pediatric neuropsychologist at West Virginia University’s Rockefeller Neuroscience Institute. Because long COVID patients frequently experience fatigue, neuropsychologists should aim to keep cognitive testing focused and brief, he added.

Despite reports from children and teenagers of difficulty with sustained attention, memory, and other cognitive functions, neuropsychological tests often indicate that long COVID patients are performing as well as other children their age. Though providers say that is good news, it can feel frustrating for patients.

“They said everything was good—that I was healthy as an ox,” said Denault. “Obviously I wasn’t, because it was brutal to even do the stress test.”

For that reason, psychologists say it is important to contextualize the results of neuropsychological tests with details from patient reports about day-to-day functioning and activity participation.

“Cognitive testing is just one of the tools that we use,” said Gray Vargas, PhD, a neuropsychologist at Kennedy Krieger. “A structured task, one-on-one in a quiet room, is very different from 9 p.m., when you’re extremely fatigued with a bad headache and you’re trying to finish your homework.”

After validating patients’ experiences, Koterba and her colleagues recommend that psychologists and other providers help children and teenagers gradually return to school, sports, and other activities. Starting with a modified schedule—shorter days at school, for instance, with built-in breaks—and prioritizing attendance over academic success are good first steps.

Schools can also make accommodations for students struggling with memory, attention, and concentration that resemble the way they support children with ADHD, Herbert said. Such assists may include additional time for assignments, reductions in the number or scope of assignments, and obtaining class notes from another student.

“We know that for kids who are recovering from any health setback, getting back into a routine that involves interacting with their peers, going to school, and doing their extracurricular activities really is critical for their mental health,” said Molly Colvin, PhD, ABPP, a pediatric neuropsychologist at Massachusetts General Hospital and an assistant professor of psychology at Harvard Medical School.

Next steps for researchers

Another major priority for providers and researchers alike is to separate the mental health, behavioral, and developmental challenges of long COVID from pandemic-related challenges that have affected all children. Gaps in learning and social interaction, for example, can lead to memory and attentional difficulties similar to those seen in long COVID, Hoskinson said.

Because long COVID is so new, much more data is needed to understand the etiology of the condition and to indicate interventions that could prevent or minimize its harmful effects. Collecting data that represent the diverse racial, ethnic, and socioeconomic spectrum of pediatric patients is crucial, Herbert said, as well as longitudinal data that tracks the course of the disease over time.

Psychologists have been part of efforts to design rigorous and thorough research protocols from the start—standardizing the way data collectors document symptoms, impairment levels, and other aspects of the condition, Hoskinson said. That approach, paired with a commitment to large-scale collaboration, sets the stage for high-quality, actionable insights that can be applied as quickly as possible.

“It’s really hit us that this is our shot to do this right,” she said. “So how do we want to do this in a way that’s really systematic [and] collaborative, and has [the] highest likelihood of making a positive impact for kids and families?”

Last updated: April 21, 2023