Abstract
Background
Pediatric Post-COVID-Condition (PPCC) clinics treat children despite limited scientific substantiation. By exploring real-life management of children diagnosed with PPCC, the International Post-COVID-Condition in Children Collaboration (IP4C) aimed to provide guidance for future PPCC care.
Methods
We performed a cross-sectional international, multicenter study on used PPCC definitions; the organization of PPCC care programs and patients characteristics. We compared aggregated data from PPCC cohorts and identified priorities to improve PPCC care.
Results
Ten PPCC care programs and six COVID-19 follow-up research cohorts participated. Aggregated data from 584 PPCC patients was analyzed. The most common symptoms included fatigue (71%), headache (55%), concentration difficulties (53%), and brain fog (48%). Severe limitations in daily life were reported in 31% of patients. Most PPCC care programs organized in-person visits with multidisciplinary teams. Diagnostic testing for respiratory and cardiac morbidity was most frequently performed and seldom abnormal. Treatment was often limited to physical therapy and psychological support.
Conclusions
We found substantial heterogeneity in both the diagnostics and management of PPCC, possibly explained by scarce scientific evidence and lack of standardized care. We present a list of components which future guidelines should address, and outline priorities concerning PPCC care pathways, research and international collaboration.
Impact
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Pediatric Post-COVID Condition (PPCC) Care programs have been initiated in many countries.
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Children with PPCC in different countries are affected by similar symptoms, limiting many to participate in daily life.
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There is substantial heterogeneity in diagnostic testing. Access to specific diagnostic tests is required to identify some long-term COVID-19 sequelae. Treatments provided were limited to physical therapy and psychological support.
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This study emphasizes the need for evidence-based diagnostics and treatment of PPCC. The International Post-COVID Collaboration for Children (IP4C) provides guidance for guideline development and introduces a framework of priorities for PPCC care and research, to improve PPCC outcomes.
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Data availability
The datasets generated during and analyzed during the current study are available from the corresponding author on reasonable request.
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Funding
T.S., S.P.P., R.S. and M.d.N. were funded by the Department of Health and Social Care, in their capacity as the National Institute for Health Research (NIHR), and by UK Research & Innovation (UKRI), who have awarded funding grant number COVLT0022. S.P.P. is also supported by a UK Medical Research Council Career Development Award (ref: MR/P020372/1). The department of Health and Social Care, as the NIHR, and URI were not involved in study design, data collection, analysis or interpretation of the data, nor the writing of the present study or the decision to submit the article for publication. All research at Great Ormond Street Hospital NHS Foundation Trust and UCL Great Ormond Street Institute of Child Health is made possible by the NIHR Great Ormond Street Hospital Biomedical Research Centre. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, UKRI, or the Department of Health. All other authors declare that no funds, grants, or other support were received during the preparation of this manuscript.
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Authors and Affiliations
Contributions
C.L.H.B. and L.C.E.N. conceptualized and designed the study, designed the data collection instruments, collected data, carried out the initial analyses, drafted the initial manuscript and reviewed and revised the manuscript. C.L.L., S.J.H.V., A.H.M.-v.d.Z., J.B.v.G., S.H. and S.W.J.T.-L. conceptualized and designed the study, critically reviewed the analyses, and reviewed and revised the manuscript. D.B., D.M., L.S., L.A., L.A.-H., A.E., O.H., M.L., L.A.M., M.M., D.W.M., A.K.M., C.R.O., E.P., M.R.-R., R.S., T.S., S.T., L.V., and D.V. conceptualized the study, reviewed the data collection tools, collected data and reviewed the manuscript. A.P.N.B., N.L.S.D., T.F., R.G.J., A.L.N.G., E.H., V.H., L.N.J., N.K., R.K., P.K., S.M., M.D.N., P.R.S.O., I.M.O., I.B.O., S.P.P., Y.P., N.D.P., R.C.F.R., M.R., C.D.R., E.S., T.S.J., D.S., J.T.S., I.S.-L., E.S., A.S., N.T., M.T., P.V., and L.R.S.V. collected data and critically reviewed the manuscript. All authors contributed to the framework, approved the final manuscript as submitted and agree to be accountable for all aspects of the manuscript.
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Competing interests
L.S. received support by the UK Foreign, Commonwealth and Development Office and Wellcome [215091/Z/18/Z] and the Bill & Melinda Gates Foundation [OPP1209135]. C.R.O. and E.P. were supported, in part, from grants by the National Institutes of Health (NIH) to C.R.O. (K23AI159518), its contents are solely the responsibility of the authors and do not necessarily represent the official views of NIH. T.S. is Chair of the Health Research Authority. All other authors have no conflicts of interest relevant to this article to disclose.
Ethical approval and consent to participate
This study was performed in line with the principles of the Declaration of Helsinki. Patient consent was not required, due to the use of aggregated and fully anonymized data. Approvement was granted by the medical research ethics committee of the Amsterdam University Medical Centers, location AMC, which evaluated this project as exempt from the Medical Research Involving Human Subjects Act (WMO) (W21_550#21.606). The study was approved by each center’s institutional review board.
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Brackel, C.L.H., Noij, L.C.E., Vijverberg, S.J.H. et al. International Care programs for Pediatric Post-COVID Condition (Long COVID) and the way forward. Pediatr Res (2024). https://doi.org/10.1038/s41390-023-03015-0
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DOI: https://doi.org/10.1038/s41390-023-03015-0
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