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
(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).
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Stephenson_PPCC international Care Paper revision2 clean final 211223[97].pdf - Accepted Version Download (185kB) | Preview |
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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