Brackel, Caroline LH; Noij, Lieke CE; Vijverberg, Susanne JH; Legghe, Camille L; Maitland-van der Zee, Anke H; Van Goudoever, Johannes B; Buonsenso, Danilo; ... Terheggen-Lagro, Suzanne WJ; + view all Brackel, Caroline LH; Noij, Lieke CE; Vijverberg, Susanne JH; Legghe, Camille L; Maitland-van der Zee, Anke H; Van Goudoever, Johannes B; Buonsenso, Danilo; Munblit, Daniel; Sigfrid, Louise; McFarland, Sammie; Anmyr, Lena; Ashkenazi-Hoffnung, Liat; Bellinat, Ana PN; Dias, Nathália LS; Edwards, Amy; Fashina, Tomini; Juraški, Romana Gjergja; Gonçalves, Ana LN; Hansted, Edita; Herczeg, Vivien; Hertting, Olof; Jankauskaite, Lina N; Kaswandani, Nastiti; Kevalas, Rimantas; Krivácsy, Péter; Lorenz, Michael; Malone, Laura A; McVoy, Molly; Miller, David W; Morrow, Amanda K; Nugawela, Manjula D; Oliveira, Carlos R; Oliveira, Pablo RS; Osmanov, Ismael M; Overmars, Isabella M; Paintsil, Elijah; Pinto Pereira, Snehal M; Prawira, Yogi; Putri, Nina Dwi; Ramos, Regina CF; Rasche, Marius; Ryd-Rinder, Malin; De Rose, Christina; Samitova, Elmira; Jovanović, Tatjana Savić; Say, Daniela; Scott, Janet T; Shachar-Lavie, Iris; Shafran, Roz; Shmueli, Einat; Snipaitiene, Ausra; Stephenson, Terence; Ténai, Nikolett; Tosif, Shidan; Turkalj, Mirjana; Valentini, Piero; Vasconcelos, Luydson RS; Villard, Li; Vilser, Daniel; Hashimoto, Simone; Terheggen-Lagro, Suzanne WJ; - view fewer (2024) International Care programs for Pediatric Post-COVID Condition (Long COVID) and the way forward. Pediatric Research 10.1038/s41390-023-03015-0. (In press).

Text Stephenson_PPCC international Care Paper revision2 clean final 211223[97].pdf - Accepted Version Access restricted to UCL open access staff until 30 July 2024. Download (185kB)

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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