COVID-19 symptom surveillance in immunocompromised children and young people in the UK: a prospective observational cohort study

Abstract

ObjectivesTo describe the frequency of symptoms compatible with SARS-CoV-2 infection in immunocompromised children and young people in the UK during the SARS-CoV-2 pandemic. To describe patient/parent anxiety regarding SARS-CoV-2 infection in this cohort.DesignA prospective observational cohort study.Setting46 centres across the UK between 16 March and 4 July 2020. A weekly online questionnaire based on the International Severe Acute Respiratory and emerging Infections Consortium-WHO Case Report Form was used to collect participant reported data on symptoms, test results, National Health Service attendance, hospital admission and impact on daily life.Participants1490 immunocompromised children, defined as those requiring an annual influenza vaccination due to their underlying condition or medication.Main outcome measuresIncidence of SARS-CoV-2-like symptoms and patient/parent anxiety score.ResultsOver 16 weeks during the first wave of the pandemic, no SARS-CoV-2 infection was diagnosed in this large immunocompromised paediatric cohort (median age 11 years, 54.4% female). 110 symptomatic participants underwent a test for SARS-CoV-2; all were negative. 922 (67.4%) participants reported at least one symptom consistent with suspected SARS-CoV-2 infection over the study period. 476 (34.8%) reported three or more symptoms. The most frequently reported symptoms included joint pain, fatigue, headache, nausea and muscle pain. SARS-CoV-2 testing during this period was performed on admitted patients only. 137 participants had their medication suspended or changed during the study period due to assumed COVID-19 disease risk. 62% reported high levels of anxiety (scores of 7–10 out of 10) at the start of the study, with anxiety levels remaining high throughout the study period.ConclusionsAlthough symptoms related to SARS-CoV-2 infection in children were common, there were no positive tests in this large immunocompromised cohort. Symptom-based screening to facilitate early detection of SARS-CoV-2 infection may not be helpful in these individuals. Patient/parent anxiety about SARS-CoV-2 infection was high.Trial registration numberNCT04382508.

Immunocompromised children and young people are at no increased risk of severe COVID-19

“…Symptom under-reporting is possible, particularly in participants with a baseline of symptoms from chronic disease, although less likely due to levels of anxiety in this cohort. 18 Hazard of infection is likely over-estimated due to self-selection bias with participants presumably responding to surveys more frequently in weeks they reported a positive PCR swab. The shielding precautions taken will have varied both between individuals and through the course of the pandemic, so the individual hazard of SARS-CoV-2 infection will vary.…”

“…Against the advice of many specialist clinicians and NICE, 16 many individuals were advised to adopt specific precautionary “shielding” measures, were subject to school closures, and have had reduced access to healthcare, causing significant burden on both them and their families. 17 , 18 …”

Impact of COVID-19 pandemic on use of rituximab among children with difficult nephrotic syndrome

“…This is similar to the observation reported in a nationwide prospective survey conducted by Shaunak et al among immunocompromised children and young adults during the first wave of SARS-CoV-2 in the United Kingdom. 10 Out of 1490 immunocompromised children across 46 centres, 110 children had symptoms consistent with SARS-CoV-2 infection but none tested positive. 10 Reports on the impact of the use of rituximab in cDNS during the COVID-19 pandemic are scarce and the risk of developing SARS-CoV-2 infection post rituximab is unclear.…”

“… 10 Out of 1490 immunocompromised children across 46 centres, 110 children had symptoms consistent with SARS-CoV-2 infection but none tested positive. 10 Reports on the impact of the use of rituximab in cDNS during the COVID-19 pandemic are scarce and the risk of developing SARS-CoV-2 infection post rituximab is unclear. In a previous international survey of COVID-19 infection among 113 children with kidney disease receiving various immunosuppressants, only 11 (10%) received rituximab.…”

Use of Monoclonal Antibody to Treat COVID-19 in Children and Adolescents: Risk of Abuse of Prescription and Exacerbation of Health Inequalities

“…In addition, identification of pediatric cases for whom mAbs are authorized can be difficult and require very complicated and expensive monitoring. A study planned to show the frequency of symptoms compatible with SARS-CoV-2 infection in pediatric patients with immunodeficiency has shown that despite 67.4% of study patients reporting one or more symptoms suggestive of suspected SARS-CoV-2 infection, of the 110 who were tested for virus none was positive for SARS-CoV-2 [ 25 ]. These results suggested an absence of symptom specificity in these patients, showing that symptoms of SARS-CoV-2 infection overlapped with those of chronic disease exacerbations.…”