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.

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Brackel, C., Noij, L., Vijverberg, S., Legghe, C., Maitland-van der Zee, A., van Goudoever, J., Buonsenso, D., Munblit, D., Sigfrid, L., McFarland, S., Anmyr, L., Ashkenazi-Hoffnung, L., Bellinat, A., Dias, N., Edwards, A., Fashina, T., Juraški, R., Gonçalves, A., Hansted, E., Herczeg, V., Hertting, O., Jankauskaite, L., Kaswandani, N., Kevalas, R., Krivácsy, P., Lorenz, M., Malone, L., McVoy, M., Miller, D., Morrow, A., Nugawela, M., Oliveira, C., Oliveira, P., Osmanov, I., Overmars, I., Paintsil, E., Pinto Pereira, S., Prawira, Y., Dwi Putri, N., Ramos, R., Rasche, M., Ryd-Rinder, M., De Rose, C., Samitova, E., Savić Jovanović, T., Say, D., Scott, J., Shachar-Lavie, I., Shafran, R., Shmueli, E., Snipaitiene, A., Stephenson, T., Ténai, N., Tosif, S., Turkalj, M., Valentini, P., Vasconcelos, L., Villard, L., Vilser, D., Hashimoto, S. & Terheggen-Lagro, S. 2024, 'International care programs for Pediatric Post-COVID Condition (Long COVID) and the way forward', Pediatric Research. https://doi.org/10.1038/s41390-023-03015-0

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Last updated: 08 February 2024
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