Article Text

Original research
COVID-19 symptom surveillance in immunocompromised children and young people in the UK: a prospective observational cohort study
  1. Meera Shaunak1,
  2. Ravin Patel2,
  3. Corine Driessens2,3,
  4. Lynne Mills1,
  5. Alice Leahy4,
  6. Diane Gbesemete1,2,
  7. Daniel R Owens1,2,
  8. Jane S Lucas2,3,5,
  9. Saul N Faust1,2,5,
  10. Hans de Graaf1,2,4
  11. On behalf of the ImmunoCOVID19 study group
  1. 1NIHR Southampton Clinical Research Facility, University Hospital Southampton NHS Foundation Trust, Southampton, UK
  2. 2Faculty of Medicine and Institute for Life Sciences, University of Southampton, Southampton, UK
  3. 3PCD Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK
  4. 4Paediatric Rheumatology, University Hospital Southampton NHS Foundation Trust, Southampton, UK
  5. 5NIHR Southampton Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK
  1. Correspondence to Dr Hans de Graaf; h.de-graaf{at}soton.ac.uk

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.

  • COVID-19
  • paediatrics
  • paediatric infectious disease & immunisation
  • immunology
http://creativecommons.org/licenses/by-nc/4.0/

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Supplementary materials

Footnotes

  • MS and RP contributed equally.

  • SNF and HdG contributed equally.

  • Collaborators The ImmunoCOVID19 study group (a full list of coauthors is provided in Supplementary Online Appendix A).

  • Contributors RP, HdG and SF planned the study. RP, MS and HdG managed the study and contributed to all parts of the manuscript. LM managed the patient data. CD provided statistical analysis. AL, DG, DO, JSL and SF contributed to managing the study and the writing, reviewing and editing of the manuscript. All members of the ImmunoCOVID group assisted with patient recruitment.

  • Funding The study was funded by the British Paediatric Allergy Immunity and Infection Group (BPAIIG) and SNF’s NIHR Senior Investigator Award. SNF, MS and DO are funded in part by the NIHR Southampton Clinical Research Facility. CD and JL are funded by NHS England for Highly Specialised Services (Primary Ciliary Dyskinesia Centre, University Hospital Southampton NHS Foundation Trust). Additional project management and information technology support was provided by the staff and resources of the NIHR Southampton Clinical Research Facility.

  • 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.

  • Patient consent for publication Not required.

  • Ethics approval Parental consent has been obtained for all participants under the age of 16 years. The study was approved by the Leeds NHS Research Ethics Committee (IRAS 281544).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Data are available on reasonable request. Research data may be made available on reasonable request, wherever legally and ethically possible.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.