@article{Brackel_C-2024_166956,
title = {International care programs for Pediatric Post-COVID Condition (Long COVID) and the way forward},
author = {Brackel, C. and Noij, L. and Vijverberg, S. and Legghe, C. and Maitland-van der Zee, A. and van Goudoever, J. and Buonsenso, D. and Munblit, D. and Sigfrid, L. and McFarland, S. and Anmyr, L. and Ashkenazi-Hoffnung, L. and Bellinat, A. and Dias, N. and Edwards, A. and Fashina, T. and Juraški, R. and Gonçalves, A. and Hansted, E. and Herczeg, V. and Hertting, O. and Jankauskaite, L. and Kaswandani, N. and Kevalas, R. and Krivácsy, P. and Lorenz, M. and Malone, L. and McVoy, M. and Miller, D. and Morrow, A. and Nugawela, M. and Oliveira, C. and Oliveira, P. and Osmanov, I. and Overmars, I. and Paintsil, E. and Pinto Pereira, S. and Prawira, Y. and Dwi Putri, N. and Ramos, R. and Rasche, M. and Ryd-Rinder, M. and De Rose, C. and Samitova, E. and Savić Jovanović, T. and Say, D. and Scott, J. and Shachar-Lavie, I. and Shafran, R. and Shmueli, E. and Snipaitiene, A. and Stephenson, T. and Ténai, N. and Tosif, S. and Turkalj, M. and Valentini, P. and Vasconcelos, L. and Villard, L. and Vilser, D. and Hashimoto, S. and Terheggen-Lagro, S.},
month = {jan},
year = {2024},
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.},
journal = {Pediatric Research},
publisher = {Springer Nature},
url = {https://doi.org/10.1038/s41390-023-03015-0},
}
