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Research definition of Long COVID in children agreed

The definition closely complements that defined by the WHO for Long COVID in adults

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The first research definition of what is meant by post acute COVID-19 – or Long COVID as it has become known – in children and young people has been formally agreed, following a new landmark study.

The definition closely complements that proposed by the World Health Organization (WHO) for Long COVID in adults, and if widely adopted, will substantially help strengthen the evidence base on this debilitating condition, say the researchers.

The included statements for a research definition of Long COVID in children and young people are:

  • 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)
  • Persist for a minimum duration of 12 weeks after initial testing for COVID-19 (even if symptoms have varied over that period)

The slew of definitions currently used, all of which differ in number, type, and duration of symptoms has contributed to the very wide reported variations in the estimated prevalence of Long COVID in children of one per cent to 51 per cent. This has hampered research efforts to date.

A consistently applied definition of Long COVID will enable researchers to reliably compare and evaluate studies on prevalence, disease course, and outcomes, providing a more accurate picture on the true impact of the condition, explain the researchers.

Consensus was reached among a representative panel of 120 international experts skilled in service delivery, research and lived experience, after careful scrutiny of  49 statements each of which was scored from 1-9, depending on their perceived importance.

These statements were sequentially whittled down in three phases (Delphi process), with the final selection of five discussed at a virtual consensus meeting. These statements were then reviewed by a panel of eight 11-17 year olds affected by Long COVID to reach final agreement.

The research concludes: “Post-COVID-19 condition occurs in young people with a history of confirmed SARS CoV-2 infection, with at least one persisting physical symptom for a minimum duration of 12 weeks after initial testing that cannot be explained by an alternative diagnosis. 

“The symptoms have an impact on everyday functioning, may continue or develop after COVID-19 infection, and may fluctuate or relapse over time.”

The researchers emphasise the need to differentiate between a clinical case definition and a research definition of Long COVID.

“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,” they state.

“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.”

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