Long COVID (post-COVID-19 condition) in children: a modified Delphi process, 2022, Stephenson et al

Abstract

Objective
The aim of this study was to derive a research definition for ‘Long COVID (post-COVID-19 condition)’ in children and young people (CYP) to allow comparisons between research studies.

Design
A three-phase online Delphi process was used, followed by a consensus meeting. Participants were presented with 49 statements in each phase and scored them from 1 to 9 based on how important they were for inclusion in the research definition of Long COVID in CYP. The consensus meeting was held to achieve representation across the stakeholder groups. Statements agreed at the consensus meeting were reviewed by participants in the Patient and Public Involvement (PPI) Research Advisory Group.

Setting
The study was conducted remotely using online surveys and a virtual consensus meeting.

Participants
120 people with relevant expertise were divided into three panels according to their area of expertise: Service Delivery, Research (or combination of research and service delivery) and Lived Experience. The PPI Research Advisory group consisted of CYP aged 11–17 years.

Main outcome measures
Consensus was defined using existing guidelines. If consensus was achieved in two or more panels or was on the border between one and two panels, those statements were discussed and voted on at the consensus meeting.

Results
Ten statements were taken forward for discussion in the consensus meeting and five statements met threshold to be included in the research definition of Long COVID among CYP. The research definition, aligned to the clinical case definition of the WHO, is proposed as follows: 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 infection, and may fluctuate or relapse over time. The positive COVID-19 test referred to in this definition can be a lateral flow antigen test, a PCR test or an antibody test.

Conclusions
This is the first research definition of Long COVID (post-COVID-19 condition) in CYP and complements the clinical case definition in adults proposed by the WHO.

Open access, https://adc.bmj.com/content/early/2022/03/31/archdischild-2021-323624

 

This is essentially the NICE long covid definition/criterion. My neighbour had covid a few months ago, and still has a cough that hasn't resolved. She has long covid according to the NICE guidance, and this is why I'm so adamant that unless people stop conflating these cases with the ME/CFS-like cases, we are in a world of trouble.

 

Research and adequate services are held up because the definition is unsatisfactory, but every process comes up with roughly the same definition.

So how does this infinite loop stop looping around? What's explicit is that the demand is for the full pathophysiology, even though many diseases don't have that. So the lock is cultural, not technical, that's just an excuse.

Is there a better textbook example of ignoring good enough by demanding perfection? Although this demand is clearly strategic and used as a justification to do nothing.

 

A foolish consistency is the hobgoblin of little minds, adored by little statesmen and philosophers and divines. With consistency a great soul has simply nothing to do. He may as well concern himself with his shadow on the wall. Speak what you think now in hard words, and to-morrow speak what to-morrow thinks in hard words again, though it contradict every thing you said to-day. — 'Ah, so you shall be sure to be misunderstood.' — Is it so bad, then, to be misunderstood? Pythagoras was misunderstood, and Socrates, and Jesus, and Luther, and Copernicus, and Galileo, and Newton, and every pure and wise spirit that ever took flesh. To be great is to be misunderstood.

— Ralph Waldo Emerson, "Self-Reliance", Essays: First Series, 1841