RECOVER Research Q&A: Pediatric Long COVID

The study, which looks at Long COVID in children and adolescents, was published in the Journal of the American Medical Association (JAMA). Read the full publication on the journal website.

The study and its findings have the potential to impact scientists, clinicians, health care teams, patients, caregivers, and community members around the world. Given the amount of people this study may reach, the Q&A below was developed to answer some of the most anticipated questions about this research and why it matters. View a summary of the JAMA study. 

Please note: This study only involves children and adolescents between 6 and 17 years old and may not be representative of everyone with Long COVID.

What are the findings of this study?

• This research involved more than 5,300 participants from the RECOVER-Pediatrics cohort at more than 60 healthcare institutions around the country. In this study, RECOVER researchers examined symptoms experienced by school-age children (6-11 years) and adolescents (12-17 years) across multiple body areas and organ systems. Using these symptoms, researchers developed a measurement tool (referred to as an “index” in the study) to help find out which children are most likely to have Long COVID. To do this, they compared children who had a history of a COVID infection with other children who had no history of a COVID infection.
  • 18 symptoms in school-age children and 17 symptoms in adolescents were found to be most-commonly found in those with a history of COVID infection compared to those without one. 14 symptoms were found to have overlapped across the two age groups. Building on this, the RECOVER research team used a statistical technique called LASSO to determine which symptoms were best at predicting Long COVID. This predictive tool became the study’s “PASC Research Index” (Long COVID Measurement Tool).
  • The most predictive symptoms included in the index for school-age children were trouble with memory or focusing, back or neck pain, stomach pain, headache, fear about specific things (phobias), refusing to go to school, itchy skin or rash, trouble sleeping, nausea or vomiting, and feeling lightheaded or dizzy.
  • In adolescents, the most predictive symptoms were change or loss in smell or taste, body, muscle, or joint pain, daytime tiredness/sleepiness or low energy, tiredness after walking, back or neck pain, trouble with memory or focusing, headache, and feeling lightheaded or dizzy.
  • The researchers found four distinct symptom clusters in school-age children and three in adolescents, suggesting that there may be several types of Long COVID that children experience.
  • In both children and adolescents identified as likely having Long COVID, there was a group of patients with a large number of symptoms occurring together in almost every organ system, as well as a cluster dominated by fatigue and pain symptoms. School-age children had a distinct cluster with neuropsychological effects (trouble with memory or focusing) and sleep impacts, and another with stomach symptoms, such as stomach pain, nausea, and vomiting. Adolescents had a specific cluster that experienced change in or loss of taste or smell, which was not found in school-age children.  
  • The use of the symptom index for children in this study is in no way intended to minimize the importance of the many other symptoms children with Long COVID may experience. It also does not make any symptoms not highlighted in this study any less real, debilitating, common, important, or worthy of scientific research and medical attention.
  • This study is a first step toward a future tool to identify Long COVID in children and adolescents and is expected to change as researchers learn more.

Why is this study important?

• This research represents the first data-driven way to identify Long COVID in children, who remain an understudied group in COVID research. Much of the studies being conducted around the world are focused on how COVID affects adults, and as a result, the virus’ impact on children, particularly in the long term, is less known. With an estimate of up to 5.8 million children in the United States suffering from Long COVID, this study underscores the importance of understanding Long COVID’s impact across various age groups. Authors of this study hope their work opens the doors for further research on Long COVID in children to help close the gap in understanding the condition in the pediatric population compared to adults. 

Should insurers, disability agencies, or doctors use these study findings to clinically define Long COVID?

• No. Insurers, disability agencies, and/or doctors should not use findings from this study to clinically define or rule out Long COVID in children.
• This study is intended to serve as a foundation for future research on Long COVID in children and is not intended for use in clinical diagnosis at this time.

Why are some common Long COVID symptoms not included in the index?

• The symptoms in the index are not necessarily the most common symptoms experienced by children, but rather, the best at indicating the presence of Long COVID. Some of the more common symptoms reported by participants with a history of a COVID infection are not included in the study’s measurement tool because they are also common in children and adolescents who do not have Long COVID. While this index may be used for ongoing research, the study authors recognize that any one symptom, including those not in the index, has the potential to indicate the presence of Long COVID in a child.

What about those whose Long COVID symptoms are not captured in this study?

• More than 200 symptoms affecting the body and all its systems have been associated with Long COVID, and more symptoms and conditions may be identified as research continues. This study only highlights symptoms most distinguishable when comparing COVID-infected and COVID-uninfected children and adolescents.
• As mentioned above, this study’s consideration of certain symptoms does not make other symptoms less real, debilitating, common, important, or worthy of scientific research and medical attention.

Is this the first study coming out of the RECOVER Initiative?

• No, but this is the first study reporting results from the RECOVER-Pediatrics cohort.
• In addition, this study is one of many RECOVER publications that contribute to our growing knowledge of potential causes and symptoms of Long COVID. View the most recent RECOVER publications on our website. 

Study Summary

This RECOVER study is one of the first of its kind to look at Long COVID symptoms in children across age groups. Researchers for this study also developed a new research tool to help identify children who were most likely to have Long COVID. The study asked about prolonged or long-lasting symptoms in both school-age children (ages 6 to 11 years old) and teenagers (ages 12 to 17 years old) and compared these symptoms between those with and without a history of a COVID infection. The symptoms that were most likely to identify school-age children with Long COVID were trouble with memory or focusing, back or neck pain, stomach pain, headache, fears, refusing to go to school, skin rashes, trouble sleeping, nausea or vomiting, and lightheadedness or dizziness. The symptoms that were most likely to identify teenagers with Long COVID included change or loss of smell or taste, bone, muscle or joint pain, back or neck pain, feeling tired all day or after walking, having low energy, trouble with memory or focusing, headache, and lightheadedness or dizziness. These study findings show Long COVID symptoms can affect almost every organ system in the body. It also showed that while many of the symptoms between the two age groups were similar, there were differences. Understanding why these differences occur can help create future Long COVID treatments for children that are age-group specific.