First research definition for ‘Long COVID’ in children and young people

8 Feb 2022, 9 a.m.

Girl writing information on a form

Teams based at the UCL Great Ormond Street Institute of Child Health (UCL GOS ICH), including consultants from GOSH, have agreed the first research definition of what is meant by ‘Long COVID’ (post-acute COVID-19) in children and young people.

The new definition is closely aligned to what the World Health Organization (WHO) proposed for Long COVID in adults and, if widely adopted, will substantially help strengthen comparisons on this often debilitating condition. The wide variety of definitions and description currently used differ in number, type, and duration of symptoms, and could be one reason why the estimated prevalence of Long COVID in children has had such large variation - from 1% to 51%.

This has hampered research efforts but a clear definition of Long COVID in children will enable researchers to reliably compare and evaluate studies on how common Long COVID is, how it progresses and the outcomes, providing a more accurate picture of the true impact of the condition.

A representative panel of 120 international experts skilled in healthcare delivery, research, and those living with Long COVID reached agreement after careful scrutiny of 49 statements each of which was scored from 1-9, depending on their perceived importance.

These statements were then further narrowed down in three phases, with the final selection of descriptions reviewed by a panel of eight 11-17 year olds affected by Long COVID, to reach final agreement.

What is Long COVID in children?

The researchers, including Professors Roz Shafran, Isobel Heyman and Terence Stephenson at GOSH and UCL GOS ICH and the CLoCK Consortium, emphasise the need to differentiate between a clinical case definition and a research definition of Long COVID. It's now much clearer for researchers to use the definition that this is a condition in which a child or young person has symptoms (at least one of which is a physical symptom) that:

  • Have continued or developed after a diagnosis of COVID-19 (confirmed with one or more positive COVID tests)
  • Impact their physical, mental or social wellbeing
  • Are interfering with some aspect of daily living (eg, school, work, home or relationships) and
  • Persist for a minimum duration of 12 weeks after initial testing for COVID-19 (even if symptoms have waxed and waned over that period)

It is understandable that the patient groups representing people with Long COVID are concerned about a definition that could restrict access to services that are needed. In our view, the decision whether a child or young person can see a healthcare professional, access any support needed, or be referred, investigated or treated for Long COVID should be a shared decision involving the young person, their carers and clinicians. Moreover, many young people may not have had access to testing early in the pandemic. The stringent research definition arrived at through this consensus process and the definition aligned to that of the WHO can be used to inform that decision making process. However, it should not be used as the yardstick by which it is determined if children and young people can access care.

Professor Terence Stephenson, Honorary Paediatric Consultant at GOSH and UCL Great Ormond Street Institute of Child Health

This research was supported by the NIHR GOSH Biomedical Research Centre

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