TY - JOUR
T1 - International Care programs for Pediatric Post-COVID Condition (Long COVID) and the way forward
AU - Brackel, Caroline L H
AU - Noij, Lieke C E
AU - Vijverberg, Susanne J H
AU - Legghe, Camille L
AU - Maitland-van der Zee, Anke H
AU - van Goudoever, Johannes B
AU - Buonsenso, Danilo
AU - Munblit, Daniel
AU - Sigfrid, Louise
AU - McFarland, Sammie
AU - Anmyr, Lena
AU - Ashkenazi-Hoffnung, Liat
AU - Bellinat, Ana P N
AU - Dias, Nathália L S
AU - Edwards, Amy
AU - Fashina, Tomini
AU - Juraški, Romana Gjergja
AU - Gonçalves, Ana L N
AU - Hansted, Edita
AU - Herczeg, Vivien
AU - Hertting, Olof
AU - Jankauskaite, Lina N
AU - Kaswandani, Nastiti
AU - Kevalas, Rimantas
AU - Krivácsy, Péter
AU - Lorenz, Michael
AU - Malone, Laura A
AU - McVoy, Molly
AU - Miller, David W
AU - Morrow, Amanda K
AU - Nugawela, Manjula D
AU - Oliveira, Carlos R
AU - Oliveira, Pablo R S
AU - Osmanov, Ismael M
AU - Overmars, Isabella M
AU - Paintsil, Elijah
AU - Pinto Pereira, Snehal M
AU - Prawira, Yogi
AU - Putri, Nina Dwi
AU - Ramos, Regina C F
AU - Rasche, Marius
AU - Ryd-Rinder, Malin
AU - De Rose, Christina
AU - Samitova, Elmira
AU - Jovanović, Tatjana Savić
AU - Say, Daniela
AU - Scott, Janet T
AU - Shachar-Lavie, Iris
AU - Shafran, Roz
AU - Shmueli, Einat
AU - Snipaitiene, Ausra
AU - Stephenson, Terence
AU - Ténai, Nikolett
AU - Tosif, Shidan
AU - Turkalj, Mirjana
AU - Valentini, Piero
AU - Vasconcelos, Luydson R S
AU - Villard, Li
AU - Vilser, Daniel
AU - Hashimoto, Simone
AU - Terheggen-Lagro, Suzanne W J
N1 - Publisher Copyright: © 2024, The Author(s), under exclusive licence to the International Pediatric Research Foundation, Inc.
PY - 2024/1/29
Y1 - 2024/1/29
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85183427819&partnerID=8YFLogxK
U2 - https://doi.org/10.1038/s41390-023-03015-0
DO - https://doi.org/10.1038/s41390-023-03015-0
M3 - Article
C2 - 38287106
SN - 0031-3998
JO - Pediatric Research
JF - Pediatric Research
ER -