International Care programs for Pediatric Post-COVID Condition (Long COVID) and the way forward

<p><strong>Background:</strong> 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 t...

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Main Authors: Brackel, CLH, Noij, LCE, Vijverberg, SJH, Legghe, CL, Maitland-van der Zee, AH, van Goudoever, JB, Buonsenso, D, Munblit, D, Sigfrid, L, McFarland, S, Anmyr, L, Ashkenazi-Hoffnung, L, Bellinat, APN, Dias, NLS, Edwards, A, Fashina, T, Juraški, RG, Gonçalves, ALN, Hansted, E, Herczeg, V, Hertting, O, Jankauskaite, LN, Kaswandani, N, Kevalas, R, Krivácsy, P, Lorenz, M, Malone, LA, McVoy, M, Miller, DW, Morrow, AK, Nugawela, MD, Oliveira, CR, Oliveira, PRS, Osmanov, IM, Overmars, IM, Paintsil, E, Pinto Pereira, SM, Prawira, Y, Putri, ND, Ramos, RCF, Rasche, M, Ryd-Rinder, M, De Rose, C, Samitova, E, Jovanović, TS, Say, D, Scott, JT, Shachar-Lavie, I, Shafran, R, Shmueli, E
Format: Journal article
Language:English
Published: Springer Nature 2024
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Summary:<p><strong>Background:</strong> 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.</p> <p><strong>Methods:</strong> 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.</p> <p><strong>Results:</strong> 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.</p> <p><strong>Conclusions:</strong> 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.</p> <p><strong>Impact:</strong> - Pediatric Post-COVID Condition (PPCC) Care programs have been initiated in many countries. - Children with PPCC in different countries are affected by similar symptoms, limiting many to participate in daily life. - 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. - 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.