International Care programs for Pediatric Post-COVID Condition (Long COVID) and the way forward
Caroline L. H. Brackel, Lieke Noij, Susanne J. H. Vijverberg, Camille L. Legghe, Anke H. Maitland‐van der Zee, Johannes B. van Goudoever, Danilo Buonsenso, Daniel Munblit, Louise Sigfrid, Sammie McFarland, Lena Anmyr, Liat Ashkenazi‐Hoffnung, Ana Paula Novaes Bellinat, Nathália L. S. Dias, Amy Edwards, Tomini A Fashina, Romana Gjergja Juraški, Ana Luíza Nogueira Gonçalves, Edita Hansted, Vivien Herczeg, Olof Hertting, Lina Jankauskaitė, Nastiti Kaswandani, Rimantas Kėvalas, Péter Krivácsy, Michael Lorenz, Laura A. Malone, Molly McVoy, David W. Miller, Amanda K. Morrow, Manjula D. Nugawela, Carlos R. Oliveira, Pablo Rafael Silveira Oliveira, Ismael M. Osmanov, Isabella Overmars, Elijah Paintsil, Snehal M. Pinto Pereira, Yogi Prawira, Nina Dwi Putri, Regina Coeli Ferreira Ramos, Marius Rasche, Malin Ryd Rinder, Christina Rose, Э. Р. Самитова, Tatjana Jovanović, Daniela F Say, J. T. Scott, Iris Shachar‐Lavie, Roz Shafran, Einat Shmueli, Aušra Šnipaitienė, Terence Stephenson, Nikolett Ténai, Shidan Tosif, Mirjana Turkalj, Piero Valentini, Luydson Richardson Silva Vasconcelos, Li Villard, Daniel Vilser, Simone Hashimoto, Suzanne W. J. Terheggen-Lagro
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. IMPACT: 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.