R3 Seminar Recap: Growing up with Long COVID—Risk factors and school impacts

Understanding Long COVID symptoms in children

Dr. Gross (New York University Grossman School of Medicine), principal investigator and director of pediatric research for the RECOVER Clinical Science Core, opened the seminar by sharing stories from families whose children missed school, activities, and time with friends because of Long COVID symptoms such as fatigue, pain, and trouble thinking clearly.

The RECOVER pediatric observational study has included almost 23,000 participants from birth through age 25 across the United States. Findings from studies of young children and school-aged children and adolescents show that Long COVID symptoms can look different depending on a child’s age.

For example, researchers found a pattern of symptoms in school-aged children (aged 6-11) related to trouble sleeping, focusing, or with memory, and stomach or intestinal issues, while also finding a pattern of symptoms in adolescents (aged 12-17) related to the change or loss of smell or taste. These symptoms may change as children develop and grow.

Families share the challenges of living with Long COVID

For many families, Long COVID has brought years of uncertainty as they search for answers and support. Ms. Covington and Dr. Wallace, RECOVER Representatives who have been caregivers for their children with Long COVID, reflected on their families’ experiences and the impact of the condition.

Ms. Covington described her son Matthew’s experience after developing Long COVID at age 8, detailing his experience with fatigue, brain fog, and postural orthostatic tachycardia syndrome (POTS, a problem with blood flow to the heart that can cause dizziness or fainting). “There is something wrong with my child, and it is directly from this COVID infection,” she recalled repeatedly telling doctors while seeking help.

Dr. Wallace shared how Long COVID affected both of her daughters in different ways. One daughter struggled with POTS, fatigue, and post-exertional malaise (symptoms that get worse after physical, mental, or emotional activity). The other experienced severe fatigue, digestive problems, and difficulty speaking and thinking clearly.

Despite these challenges, both Representatives said one of the biggest obstacles was convincing others that their children’s symptoms were real. Because many children with Long COVID do not look visibly ill, families often struggle to obtain medical care, school accommodations, and other support services.

Social and economic factors may affect Long COVID risk

Researchers are also working to understand why some children develop Long COVID while others do not. Dr. Rhee (University of California San Diego School of Medicine, Rady Children’s Hospital) presented findings from a study on social determinants of health (SDOH)—non-medical factors that influence health, such as access to healthcare, financial stability, education, social support, and experiences of discrimination.

Using data from more than 4,500 children and adolescents aged 6 to 17, researchers found that children facing economic hardship or challenging social circumstances were more likely to develop Long COVID. The most common SDOH factors in children with Long COVID were:

• Food insecurity (limited access to nutritious food)
• Limited access to resources
• Low social support
• Experiences of discrimination or unfair treatment

Dr. Rhee explained that difficult social conditions can contribute to chronic stress, which may affect the body’s ability to recover after illness. These findings suggest that a child’s environment and life experiences may play an important role in Long COVID risk and recovery.

Long COVID can affect learning and social development

Long COVID can affect more than physical health. Dr. Reeder (Harvard T.H. Chan School of Public Health, Massachusetts General Hospital) shared findings from a RECOVER study showing that the condition can also affect how children learn, interact with friends, and participate in school activities.

The study included children and adolescents aged 6 to 17 who previously had COVID-19. Compared with those without Long COVID, study participants with Long COVID were more likely to experience:

• Worsening grades
• Trouble paying attention or concentrating
• Less fun with friends
• A need for educational support such as an Individualized Education Program (IEP)

“These findings bring attention to an urgent need to develop, provide, and evaluate school services for children and adolescents with Long COVID,” Dr. Reeder said.

Moving into the next phase of RECOVER pediatric study

As RECOVER enters the next phase of pediatric Long COVID research, scientists, families, and community members continue working toward a shared goal—helping children get the care, support, and opportunities they need to thrive. By studying thousands of children nationwide, RECOVER is building an evidence base that can help caregivers, healthcare providers, educators, and public health practitioners better understand Long COVID and support affected families.

With additional National Institutes of Health (NIH) funding, RECOVER researchers will continue following approximately 4,300 pediatric study participants for 2 more years. The next phase of the pediatric observational study will explore:

• How Long COVID symptoms change as children age.
• How a child’s age affects the persistence or improvement of Long COVID symptoms over time.
• What new or worsening conditions may occur as children with Long COVID grow.

To set priorities for the next phase, researchers worked with healthcare providers and Patient, Caregiver, and Community Representatives in 5 working groups. Together, group members identified important questions and experiences to study, including symptoms, school experiences and accommodations, treatments, and in-person health assessments. The groups aimed to ensure future research reflects both scientific priorities and the real-world challenges families encounter.

Researchers are using data and biosamples collected during the pediatric study in pathobiology and systems biology studies, which combine information from many study participants to understand changes across different body systems. By looking at these systems together, researchers hope to identify biological processes or patterns linked to Long COVID, understand why symptoms persist in some children, and identify different subtypes of the condition.

Investigators interested in studying the biological mechanisms of Long COVID can apply to use RECOVER data and biosamples collected from participants in observational studies, which include the pediatric cohort, and clinical trials. Learn about Research Opportunity Announcement OTA-21-015L.

To find recordings and transcripts from previous R3 Seminars, visit the R3 Seminar Series webpage or the RECOVER YouTube channel.