Studying the post-COVID-19 condition: research challenges, strategies, and importance of Core Outcome Set development

Daniel Munblit; Timothy R. Nicholson; Dale M. Needham; Nina Seylanova; Callum Parr; Jessica Chen; Alisa Kokorina; Louise Sigfrid; Danilo Buonsenso; Shinjini Bhatnagar; Ramachandran Thiruvengadam; Ann M. Parker; Jacobus Preller; Sergey Avdeev; Frederikus A. Klok; Allison Tong; Janet V. Diaz; Wouter De Groote; Nicoline Schiess; Athena Akrami; Frances Simpson; Piero Olliaro; Christian Apfelbacher; Regis Goulart Rosa; Jennifer R. Chevinsky; Sharon Saydah; Jochen Schmitt; Alla Guekht; Sarah L. Gorst; Jon Genuneit; Luis Felipe Reyes; Alan Asmanov; Margaret E. O’Hara; Janet T. Scott; Melina Michelen; Charitini Stavropoulou; John O. Warner; Margaret Herridge; Paula R. Williamson

doi:10.1186/s12916-021-02222-y

Studying the post-COVID-19 condition: research challenges, strategies, and importance of Core Outcome Set development

Daniel Munblit^*, Timothy R. Nicholson, Dale M. Needham, Nina Seylanova, Callum Parr, Jessica Chen, Alisa Kokorina, Louise Sigfrid, Danilo Buonsenso, Shinjini Bhatnagar, Ramachandran Thiruvengadam, Ann M. Parker, Jacobus Preller, Sergey Avdeev, Frederikus A. Klok, Allison Tong, Janet V. Diaz, Wouter De Groote, Nicoline Schiess, Athena AkramiFrances Simpson, Piero Olliaro, Christian Apfelbacher, Regis Goulart Rosa, Jennifer R. Chevinsky, Sharon Saydah, Jochen Schmitt, Alla Guekht, Sarah L. Gorst, Jon Genuneit, Luis Felipe Reyes, Alan Asmanov, Margaret E. O’Hara, Janet T. Scott, Melina Michelen, Charitini Stavropoulou, John O. Warner, Margaret Herridge, Paula R. Williamson

^*Corresponding author for this work

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

69 Citations (Scopus)

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Abstract

Background: A substantial portion of people with COVID-19 subsequently experience lasting symptoms including fatigue, shortness of breath, and neurological complaints such as cognitive dysfunction many months after acute infection. Emerging evidence suggests that this condition, commonly referred to as long COVID but also known as post-acute sequelae of SARS-CoV-2 infection (PASC) or post-COVID-19 condition, could become a significant global health burden. Main text: While the number of studies investigating the post-COVID-19 condition is increasing, there is no agreement on how this new disease should be defined and diagnosed in clinical practice and what relevant outcomes to measure. There is an urgent need to optimise and standardise outcome measures for this important patient group both for clinical services and for research and to allow comparing and pooling of data. Conclusions: A Core Outcome Set for post-COVID-19 condition should be developed in the shortest time frame possible, for improvement in data quality, harmonisation, and comparability between different geographical locations. We call for a global initiative, involving all relevant partners, including, but not limited to, healthcare professionals, researchers, methodologists, patients, and caregivers. We urge coordinated actions aiming to develop a Core Outcome Set (COS) for post-COVID-19 condition in both the adult and paediatric populations.

Original language	English
Article number	50
Journal	BMC Medicine
Volume	20
Issue number	1
DOIs	https://doi.org/10.1186/s12916-021-02222-y
Publication status	Published - 4 Feb 2022

Keywords

Core Outcome Set
COVID-19
COVID-19 sequalae
Long COVID
Outcomes
PASC
Post-acute sequelae of SARS-CoV-2 infection
Post-COVID-19 condition

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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Munblit, D., Nicholson, T. R., Needham, D. M., Seylanova, N., Parr, C., Chen, J., Kokorina, A., Sigfrid, L., Buonsenso, D., Bhatnagar, S., Thiruvengadam, R., Parker, A. M., Preller, J., Avdeev, S., Klok, F. A., Tong, A., Diaz, J. V., Groote, W. D., Schiess, N., ... Williamson, P. R. (2022). Studying the post-COVID-19 condition: research challenges, strategies, and importance of Core Outcome Set development. BMC Medicine, 20(1), Article 50. https://doi.org/10.1186/s12916-021-02222-y

@article{e3c023f56bed4924bb9e49d28861eab8,

title = "Studying the post-COVID-19 condition: research challenges, strategies, and importance of Core Outcome Set development",

abstract = "Background: A substantial portion of people with COVID-19 subsequently experience lasting symptoms including fatigue, shortness of breath, and neurological complaints such as cognitive dysfunction many months after acute infection. Emerging evidence suggests that this condition, commonly referred to as long COVID but also known as post-acute sequelae of SARS-CoV-2 infection (PASC) or post-COVID-19 condition, could become a significant global health burden. Main text: While the number of studies investigating the post-COVID-19 condition is increasing, there is no agreement on how this new disease should be defined and diagnosed in clinical practice and what relevant outcomes to measure. There is an urgent need to optimise and standardise outcome measures for this important patient group both for clinical services and for research and to allow comparing and pooling of data. Conclusions: A Core Outcome Set for post-COVID-19 condition should be developed in the shortest time frame possible, for improvement in data quality, harmonisation, and comparability between different geographical locations. We call for a global initiative, involving all relevant partners, including, but not limited to, healthcare professionals, researchers, methodologists, patients, and caregivers. We urge coordinated actions aiming to develop a Core Outcome Set (COS) for post-COVID-19 condition in both the adult and paediatric populations.",

keywords = "Core Outcome Set, COVID-19, COVID-19 sequalae, Long COVID, Outcomes, PASC, Post-acute sequelae of SARS-CoV-2 infection, Post-COVID-19 condition",

author = "Daniel Munblit and Nicholson, {Timothy R.} and Needham, {Dale M.} and Nina Seylanova and Callum Parr and Jessica Chen and Alisa Kokorina and Louise Sigfrid and Danilo Buonsenso and Shinjini Bhatnagar and Ramachandran Thiruvengadam and Parker, {Ann M.} and Jacobus Preller and Sergey Avdeev and Klok, {Frederikus A.} and Allison Tong and Diaz, {Janet V.} and Groote, {Wouter De} and Nicoline Schiess and Athena Akrami and Frances Simpson and Piero Olliaro and Christian Apfelbacher and Rosa, {Regis Goulart} and Chevinsky, {Jennifer R.} and Sharon Saydah and Jochen Schmitt and Alla Guekht and Gorst, {Sarah L.} and Jon Genuneit and Reyes, {Luis Felipe} and Alan Asmanov and O{\textquoteright}Hara, {Margaret E.} and Scott, {Janet T.} and Melina Michelen and Charitini Stavropoulou and Warner, {John O.} and Margaret Herridge and Williamson, {Paula R.}",

note = "Funding Information: We would like to thank Nikita A Nekliudov for his help with the literature search for this manuscript. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention, the International Severe Acute Respiratory and Emerging Infection Consortium, and the World Health Organisation. Publisher Copyright: {\textcopyright} 2022, The Author(s).",

year = "2022",

month = feb,

day = "4",

doi = "10.1186/s12916-021-02222-y",

language = "English",

volume = "20",

journal = "BMC Medicine",

issn = "1741-7015",

publisher = "BIOMED CENTRAL LTD",

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Munblit, D, Nicholson, TR, Needham, DM, Seylanova, N, Parr, C, Chen, J, Kokorina, A, Sigfrid, L, Buonsenso, D, Bhatnagar, S, Thiruvengadam, R, Parker, AM, Preller, J, Avdeev, S, Klok, FA, Tong, A, Diaz, JV, Groote, WD, Schiess, N, Akrami, A, Simpson, F, Olliaro, P, Apfelbacher, C, Rosa, RG, Chevinsky, JR, Saydah, S, Schmitt, J, Guekht, A, Gorst, SL, Genuneit, J, Reyes, LF, Asmanov, A, O’Hara, ME, Scott, JT, Michelen, M, Stavropoulou, C, Warner, JO, Herridge, M & Williamson, PR 2022, 'Studying the post-COVID-19 condition: research challenges, strategies, and importance of Core Outcome Set development', BMC Medicine, vol. 20, no. 1, 50. https://doi.org/10.1186/s12916-021-02222-y

TY - JOUR

T1 - Studying the post-COVID-19 condition

T2 - research challenges, strategies, and importance of Core Outcome Set development

AU - Munblit, Daniel

AU - Nicholson, Timothy R.

AU - Needham, Dale M.

AU - Seylanova, Nina

AU - Parr, Callum

AU - Chen, Jessica

AU - Kokorina, Alisa

AU - Sigfrid, Louise

AU - Buonsenso, Danilo

AU - Bhatnagar, Shinjini

AU - Thiruvengadam, Ramachandran

AU - Parker, Ann M.

AU - Preller, Jacobus

AU - Avdeev, Sergey

AU - Klok, Frederikus A.

AU - Tong, Allison

AU - Diaz, Janet V.

AU - Groote, Wouter De

AU - Schiess, Nicoline

AU - Akrami, Athena

AU - Simpson, Frances

AU - Olliaro, Piero

AU - Apfelbacher, Christian

AU - Rosa, Regis Goulart

AU - Chevinsky, Jennifer R.

AU - Saydah, Sharon

AU - Schmitt, Jochen

AU - Guekht, Alla

AU - Gorst, Sarah L.

AU - Genuneit, Jon

AU - Reyes, Luis Felipe

AU - Asmanov, Alan

AU - O’Hara, Margaret E.

AU - Scott, Janet T.

AU - Michelen, Melina

AU - Stavropoulou, Charitini

AU - Warner, John O.

AU - Herridge, Margaret

AU - Williamson, Paula R.

N1 - Funding Information: We would like to thank Nikita A Nekliudov for his help with the literature search for this manuscript. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention, the International Severe Acute Respiratory and Emerging Infection Consortium, and the World Health Organisation. Publisher Copyright: © 2022, The Author(s).

PY - 2022/2/4

Y1 - 2022/2/4

N2 - Background: A substantial portion of people with COVID-19 subsequently experience lasting symptoms including fatigue, shortness of breath, and neurological complaints such as cognitive dysfunction many months after acute infection. Emerging evidence suggests that this condition, commonly referred to as long COVID but also known as post-acute sequelae of SARS-CoV-2 infection (PASC) or post-COVID-19 condition, could become a significant global health burden. Main text: While the number of studies investigating the post-COVID-19 condition is increasing, there is no agreement on how this new disease should be defined and diagnosed in clinical practice and what relevant outcomes to measure. There is an urgent need to optimise and standardise outcome measures for this important patient group both for clinical services and for research and to allow comparing and pooling of data. Conclusions: A Core Outcome Set for post-COVID-19 condition should be developed in the shortest time frame possible, for improvement in data quality, harmonisation, and comparability between different geographical locations. We call for a global initiative, involving all relevant partners, including, but not limited to, healthcare professionals, researchers, methodologists, patients, and caregivers. We urge coordinated actions aiming to develop a Core Outcome Set (COS) for post-COVID-19 condition in both the adult and paediatric populations.

AB - Background: A substantial portion of people with COVID-19 subsequently experience lasting symptoms including fatigue, shortness of breath, and neurological complaints such as cognitive dysfunction many months after acute infection. Emerging evidence suggests that this condition, commonly referred to as long COVID but also known as post-acute sequelae of SARS-CoV-2 infection (PASC) or post-COVID-19 condition, could become a significant global health burden. Main text: While the number of studies investigating the post-COVID-19 condition is increasing, there is no agreement on how this new disease should be defined and diagnosed in clinical practice and what relevant outcomes to measure. There is an urgent need to optimise and standardise outcome measures for this important patient group both for clinical services and for research and to allow comparing and pooling of data. Conclusions: A Core Outcome Set for post-COVID-19 condition should be developed in the shortest time frame possible, for improvement in data quality, harmonisation, and comparability between different geographical locations. We call for a global initiative, involving all relevant partners, including, but not limited to, healthcare professionals, researchers, methodologists, patients, and caregivers. We urge coordinated actions aiming to develop a Core Outcome Set (COS) for post-COVID-19 condition in both the adult and paediatric populations.

KW - Core Outcome Set

KW - COVID-19

KW - COVID-19 sequalae

KW - Long COVID

KW - Outcomes

KW - PASC

KW - Post-acute sequelae of SARS-CoV-2 infection

KW - Post-COVID-19 condition

UR - http://www.scopus.com/inward/record.url?scp=85123973127&partnerID=8YFLogxK

U2 - 10.1186/s12916-021-02222-y

DO - 10.1186/s12916-021-02222-y

M3 - Article

C2 - 35114994

AN - SCOPUS:85123973127

SN - 1741-7015

VL - 20

JO - BMC Medicine

JF - BMC Medicine

IS - 1

M1 - 50

ER -

Studying the post-COVID-19 condition: research challenges, strategies, and importance of Core Outcome Set development

Abstract

Keywords

UN SDGs

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