Informing interventions to support children and young people with long-term effects of infections in the SARS-CoV-2 pandemic era: Analyses of linked survey data and electronic health record data in England

Background SARS-CoV-2 infection (which causes COVID-19 disease) is generally mild in children and young people. However, a large number have symptoms weeks after infection, loosely termed 'long-COVID'. Previous studies, and an online discussion group with families affected by long-COVID held to inform this study, have shown that symptoms are wide-ranging and can be severe. The National Institute for Health and Care Excellence considers long-COVID to include the broadly-defined 'ongoing symptomatic COVID-19' (signs and symptoms 4-12 weeks after infection) and 'post-COVID-19 syndrome' (signs and symptoms more than 12 weeks after infection), but does not specify what these symptoms are. The likelihood of children and young people developing long-COVID, which of them are most at risk, and their long-term outlook, are unknown. Many different viral and bacterial infections besides SARS-CoV-2 can cause lingering health effects in children and young people. It is not clear if the reasons for developing long-term health effects from other infections are similar or different to long-COVID. It is also not known whether the healthcare needs are similar or different. Consequently, the burden on the NHS and wider society is unknown. All of these gaps in our knowledge make it very difficult to plan healthcare services, and for doctors to advise at-risk and affected children and young people. The Schools Infection Survey The Schools Infection Survey (SIS) is the only nationwide study of SARS-CoV-2 infection in schoolchildren (4-18-year-olds) in England. During the academic years 2020-21 (SIS-1) and 2021-22 (SIS-2) it regularly tested for SARS-CoV-2 infection and recorded symptoms and school absence for all participants. The Department for Education also has data on school absence. SIS-2 recently reported that 1.8% of primary school pupils and 4.8% of secondary school pupils had long-COVID. Linking to data on numbers of GP visits, hospital admissions, related diagnoses, and prescriptions following an infection in SIS participants could give us a lot of information about how SARS-CoV-2 and other infections affect children and young people, as well as the burden and cost to the NHS. Using linked data would avoid using more questionnaires, which the discussion group said can be burdensome for families with an ill child. Factors which contribute to vulnerability to long-term health effects, such as age, gender, deprivation, pre-existing illnesses, and multiple infections, will be investigated. Research Questions and Methods This research will address the following questions: 1. How many children and young people in England have long-COVID, what are their risk factors, what are their healthcare/educational needs, and what is the associated cost? 2. How similar or different are the risk factors, healthcare/educational needs and cost, and numbers affected, for long-term effects of other infections (using fever as a marker) in children and young people in England? To do this, SIS data will be linked to data on health service attendances, diagnoses, prescriptions, and school absence. Different infectious causes of fever will be investigated. The results from SIS will be scaled up for all children in England. Use of Study Findings This four-year study begins in April 2023. Within the first 18 months, the risk of long-term outcomes will have been analysed, and initial cost estimates produced. The findings will be published in academic journals and policy reports, and shared with the media. Information will be produced to provide much-needed reassurance for affected families, and to empower families to decide when to manage symptoms at home and when to seek a healthcare consultation. Families affected by long-COVID will be engaged regularly throughout the study, and will be crucial to shaping the study outputs. They have already advised that videos would be more accessible than a lot of written information.