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

Abstract

Objectives: To 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.

Design: A prospective observational cohort study.

Setting: 46 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.

Participants: 1490 immunocompromised children, defined as those requiring an annual influenza vaccination due to their underlying condition or medication.

Main outcome measures: Incidence of SARS-CoV-2-like symptoms and patient/parent anxiety score.

Results: Over 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.

Conclusions: Although 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 number: NCT04382508.

Keywords: COVID-19; immunology; paediatric infectious disease & immunisation; paediatrics.

Conflict of interest statement

Competing interests: All authors have completed the ICMJE uniform disclosure form at www.icmje.org/coi_disclosure.pdf. HdG received grant funding from the BPAIIG for the submitted work; there are no other relationships or activities that could appear to have influenced the submitted work.

© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

Figures

Figure 1

Study recruitment and weekly questionnaire response rate.

Figure 2

(A) Venn diagram depicting the association between fever, cough, shortness of breath and sore throat during the study period. (B) Reported symptoms in airways disease patients over time. (C) Reported symptoms in non-airways disease patients over time.

Figure 3

(A) Reported school attendance over time. (B) Reported anxiety levels over time. Anxiety scores out of 10 categorised into mild (1–3), moderate (4–6) and severe (7–10) anxiety, with a score of 0 indicating no anxiety.