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.

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

 

Requiring a positive test makes getting a diagnosis pretty difficult in many countries.
Yet only having to have one symptom is pretty broad.....
"putting the little hurdle, after the big hurdle" (quote from a PwME in my household)

 

It looks fatuous. People having trouble after Covid are defined as people having trouble after Covid that isn't something else. It is a bit like defining 2022 disease as people who are ill in 2022. It is heart sinking to see what is supposed to be a top level academic unit producing guff like this.

 

What does that mean for the alternative diagnoses that are discriminated in health care? In many cases there would be ME, IBS, POTS, fibromyalgia, etc. as diagnoses. But their algorithm also uses the same. Do they count? If not, why not? It's all so arbitrary.

Somehow this reminds of dangling pointers. It shouldn't mean anything to non-programmers but... yeah. It results in crashing either way, blue screen of death and needless suffering.

 

Perhaps someone might comment who understands better than I do. Here is the WHO page on LC:

https://www.who.int/publications/i/...-19_condition-Clinical_case_definition-2021.1

It says:

Also as is probably known by many here already it's money from NIHR as usual.

They'll be tinkering around with this endlessly on into the future if not stopped and no one who's ill can expect any help from any of this.