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

Andy

Andy

Retired committee member
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)
 
On this basis we should see a dramatic drop in the number of new cases of Long Covid in children in the UK, since the government has removed free testing, so that criteria for diagnosis won't be met by most, however sick they are. This hasn't been thought through.
 
The paper said:
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
Click to expand...
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.
 
What this study adds?
  • The first research definition of Long COVID in children and young people that complements the definition proposed by the WHO for adults.
Click to expand...

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:

WHO has developed a clinical case definition of post COVID-19 condition by Delphi methodology that includes 12 domains, available for use in all settings. This first version was developed by patients, researchers and others, representing all WHO regions, with the understanding that the definition may change as new evidence emerges and our understanding of the consequences of COVID-19 continues to evolve.

Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms and that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also others and generally have an impact on everyday functioning. Symptoms may be new onset following initial recovery from an acute COVID-19 episode or persist from the initial illness. Symptoms may also fluctuate or relapse over time.
Click to expand...


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.
 
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