This research, ‘Enhancing the Utilization of COVID-19 Testing in Schools’, is a study looking at the characteristics of long COVID and COVID-19 infection in children.Funding for the studywas successfully awarded through a rapid funding call by Health Data Research UK(51),theOffice for National Statistics(ONS)and UK Research and Innovation. Criteria for assessment included proposed benefits to patients and the public and how the research would improve data for future studies. This project forms part of the larger Data and Connectivity National Core Study,which is led byHDRUKin partnership withONS,and enables access to health and administrative data from across the UK and provides the infrastructure for vital data research.

51provided advice and guidance to the research teamindeveloping their plans for patient and public involvement and engagement, as well as ongoing support and monitoring.

In this study, theresearchersare aimingto use data from two large COVID-19 school infection studies:theSchools Infection Survey (SIS; a collaboration between ONS,London School of Hygiene and Tropical Medicine[LSHTM]and Public Health England[PHE])and the Bristol-based COVID-19 Mapping and Mitigation in Schools (CoMMinS) study(University of Bristol, in partnership with Bristol City Council, PHE and Bristolschools), along with information from Electronic Patient Records, to find out more about the characteristics of:

  1. Long COVID in children, such as how it is clinically recorded,treatedand managed by the healthcare system(‘Long COVID’is commonly used to describe signs and symptoms that continue or develop after acute COVID‑19)
  2. Asymptomatic COVID-19 infection in childrencompared to symptomatic infection, such as whether symptomatic infections are more likely to lead to longCOVID
  3. COVID-19 re-infection in children, such as whether multiple infections are more likely to lead to long COVID.

This is asummarisedversion of a longer report outlining theresearchers’activities and findingsfrominvolvingyoung people,parentsand doctors. You can read the full report

How wereyoung people, parents and doctorsinvolved?

To help inform the research questions and methods,theresearchersgathered viewsabout long COVID in childrenfrom young people, parentsof children with long COVID or suspected long COVID,and doctors,between 9 March and 30 April 2021. Thefindings are summarised from:

  • An online meeting with 7 young people aged 13-18 years from the NIHR Bristol Biomedical Research Centre Young People’s Advisory Group (YPAG)
  • An online meeting with 5 familieswhose children, aged 10-16 years, have long COVID or suspected longCOVID
  • A survey completed by 4 GPs and 1 paediatrician, and an online meeting with 2 paediatricians.

The researchers involved small numbers ofyoung people,parentsand doctors, who may not be representative.

What didyoung people, parents and doctorssay?

Of the symptoms listed by the NHS for long COVID, feeling sick or stomach pain, extreme tiredness, and headaches were the symptoms commonly ranked as most ‘harmful’ by young people and by families whose children have long COVID or suspected long COVID.

The young people thought these kinds of symptoms would be more harmful because they would affect their ability to carry out day-to-day activities, such asschool work, paid work, sport andsocialising.

“You’d really struggle to want to go out or make friends and keep those friends if they were often going out and you couldn’t because you didn’t feel well enough to do so. It would really impact your social life. And if you couldn’t make it to school it would impact your future because you couldn’t keep up with your schoolwork and keep your grades up.”

The familieswhose children hadlong COVID or suspected long COVIDtold the researchersthattheir childrenwere experiencingmany, and often very severe, symptoms associated with long COVID.For those children that hadbeen diagnosed with long COVID,it had taken a long time to get a diagnosis.The types of secondary care services the families had accessed and tests they had been given had been very variable, and again, getting these had been a lengthy struggle.

“The GP I have to say was really helpful except that she had no idea what to do because there wasn’t any care pathway. She kept saying:‘There’s no care pathway for children with long COVID’.”

Many of the childrenwith long COVID or suspected long COVIDhad not been tested for COVID-19 when they first had symptoms of infection, as testing was not widely available at the time.

The doctorstold the researchersthat clinical understanding of long COVID in children is currently extremely limited. Long COVID in children is not well defined, and it may be difficult for doctors to distinguish between long COVID and other conditions. We still need to understand whether long COVID is a newcondition in itself, ora group of conditions like post viral fatigue we already know about.

“I think GPs are still getting their heads round long COVID in general – never mind in kids.”

What was the impact of involvingyoung people,parentsand doctors?

The involvement ofyoung people, parents and doctorshighlighted thatsickness,fatigue, and headachesarekey symptomsto considerinthestudy.

It also highlighted that looking more broadly at things like GP and hospital visits, and school attendance, might be a more useful and feasible way at this time of assessing how COVID-19 has affected childrenrather than using diagnoses alone. However,the researchersalso need to be aware of things like reduced healthcare access during the pandemic, and absence from school due to self-isolation, which will affect whatis beingmeasured. Also, children with milder symptomsmay not seek care at all.

Since not everyone with COVID-19 infection isnecessarilytested,the study researchersneed to consider thatsome health measuressuch asasymptomatic infections and re-infectionsmay not always be recorded.

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