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

Caroline L H Brackel; Lieke C E 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 P N Bellinat; Nathália L S Dias; Amy Edwards; Tomini Fashina; Romana Gjergja Juraški; Ana L N Gonçalves; Edita Hansted; Vivien Herczeg; Olof Hertting; Lina N Jankauskaite; Nastiti Kaswandani; Rimantas Kevalas; Péter Krivácsy; Michael Lorenz; Laura A Malone; Molly McVoy; David W Miller; Amanda K Morrow; Manjula D Nugawela; Carlos R Oliveira; Pablo R S Oliveira; Ismael M Osmanov; Isabella M Overmars; Elijah Paintsil; Snehal M Pinto Pereira; Yogi Prawira; Nina Dwi Putri; Regina C F Ramos; Marius Rasche; Malin Ryd-Rinder; Christina De Rose; Elmira Samitova; Tatjana Savić Jovanović; Daniela Say; Janet T Scott; Iris Shachar-Lavie; Roz Shafran; Einat Shmueli; Ausra Snipaitiene; Terence Stephenson; Nikolett Ténai; Shidan Tosif; Mirjana Turkalj; Piero Valentini; Luydson R S Vasconcelos; Li Villard; Daniel Vilser; Simone Hashimoto; Suzanne W J Terheggen-Lagro

doi:https://doi.org/10.1038/s41390-023-03015-0

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

Caroline L H Brackel, Lieke C E 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 P N Bellinat, Nathália L S Dias, Amy Edwards, Tomini Fashina, Romana Gjergja Juraški, Ana L N Gonçalves, Edita Hansted, Vivien HerczegOlof Hertting, Lina N Jankauskaite, Nastiti Kaswandani, Rimantas Kevalas, Péter Krivácsy, Michael Lorenz, Laura A Malone, Molly McVoy, David W Miller, Amanda K Morrow, Manjula D Nugawela, Carlos R Oliveira, Pablo R S Oliveira, Ismael M Osmanov, Isabella M Overmars, Elijah Paintsil, Snehal M Pinto Pereira, Yogi Prawira, Nina Dwi Putri, Regina C F Ramos, Marius Rasche, Malin Ryd-Rinder, Christina De Rose, Elmira Samitova, Tatjana Savić Jovanović, Daniela Say, Janet T Scott, Iris Shachar-Lavie, Roz Shafran, Einat Shmueli, Ausra Snipaitiene, Terence Stephenson, Nikolett Ténai, Shidan Tosif, Mirjana Turkalj, Piero Valentini, Luydson R S Vasconcelos, Li Villard, Daniel Vilser, Simone Hashimoto, Suzanne W J Terheggen-Lagro

Research output: Contribution to journal › Article › Academic › peer-review

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.

Original language	English
Journal	Pediatric Research
Early online date	29 Jan 2024
DOIs	https://doi.org/10.1038/s41390-023-03015-0
Publication status	E-pub ahead of print - 29 Jan 2024

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Brackel, C. L. H., Noij, L. C. E., Vijverberg, S. J. H., Legghe, C. L., Maitland-van der Zee, A. H., van Goudoever, J. B., Buonsenso, D., Munblit, D., Sigfrid, L., McFarland, S., Anmyr, L., Ashkenazi-Hoffnung, L., Bellinat, A. P. N., Dias, N. L. S., Edwards, A., Fashina, T., Juraški, R. G., Gonçalves, A. L. N., Hansted, E., ... Terheggen-Lagro, S. W. J. (2024). International Care programs for Pediatric Post-COVID Condition (Long COVID) and the way forward. Pediatric Research. Advance online publication. https://doi.org/10.1038/s41390-023-03015-0

@article{1523ca0e10ce4231b4ccd43c795572dd,

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

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.",

author = "Brackel, {Caroline L H} and Noij, {Lieke C E} and Vijverberg, {Susanne J H} and Legghe, {Camille L} and {Maitland-van der Zee}, {Anke H} and {van Goudoever}, {Johannes B} and Danilo Buonsenso and Daniel Munblit and Louise Sigfrid and Sammie McFarland and Lena Anmyr and Liat Ashkenazi-Hoffnung and Bellinat, {Ana P N} and Dias, {Nath{\'a}lia L S} and Amy Edwards and Tomini Fashina and Jura{\v s}ki, {Romana Gjergja} and Gon{\c c}alves, {Ana L N} and Edita Hansted and Vivien Herczeg and Olof Hertting and Jankauskaite, {Lina N} and Nastiti Kaswandani and Rimantas Kevalas and P{\'e}ter Kriv{\'a}csy and Michael Lorenz and Malone, {Laura A} and Molly McVoy and Miller, {David W} and Morrow, {Amanda K} and Nugawela, {Manjula D} and Oliveira, {Carlos R} and Oliveira, {Pablo R S} and Osmanov, {Ismael M} and Overmars, {Isabella M} and Elijah Paintsil and {Pinto Pereira}, {Snehal M} and Yogi Prawira and Putri, {Nina Dwi} and Ramos, {Regina C F} and Marius Rasche and Malin Ryd-Rinder and {De Rose}, Christina and Elmira Samitova and Jovanovi{\'c}, {Tatjana Savi{\'c}} and Daniela Say and Scott, {Janet T} and Iris Shachar-Lavie and Roz Shafran and Einat Shmueli and Ausra Snipaitiene and Terence Stephenson and Nikolett T{\'e}nai and Shidan Tosif and Mirjana Turkalj and Piero Valentini and Vasconcelos, {Luydson R S} and Li Villard and Daniel Vilser and Simone Hashimoto and Terheggen-Lagro, {Suzanne W J}",

note = "Publisher Copyright: {\textcopyright} 2024, The Author(s), under exclusive licence to the International Pediatric Research Foundation, Inc.",

year = "2024",

month = jan,

day = "29",

doi = "https://doi.org/10.1038/s41390-023-03015-0",

language = "English",

journal = "Pediatric Research",

issn = "0031-3998",

publisher = "Lippincott Williams and Wilkins",

}

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, Snipaitiene, A, Stephenson, T, Ténai, N, Tosif, S, Turkalj, M, Valentini, P, Vasconcelos, LRS, Villard, L, Vilser, D, Hashimoto, S & Terheggen-Lagro, SWJ 2024, 'International Care programs for Pediatric Post-COVID Condition (Long COVID) and the way forward', Pediatric Research. https://doi.org/10.1038/s41390-023-03015-0

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

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 -

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

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