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

• Published in: BMC medicine Vol. 20; no. 1; p. 50
• Main Authors: Munblit, Daniel, Nicholson, Timothy R, Needham, Dale M, Seylanova, Nina, Parr, Callum, Chen, Jessica, Kokorina, Alisa, Sigfrid, Louise, Buonsenso, Danilo, Bhatnagar, Shinjini, Thiruvengadam, Ramachandran, Parker, Ann M, Preller, Jacobus, Avdeev, Sergey, Klok, Frederikus A, Tong, Allison, Diaz, Janet V, Groote, Wouter De, Schiess, Nicoline, Akrami, Athena, Simpson, Frances, Olliaro, Piero, Apfelbacher, Christian, Rosa, Regis Goulart, Chevinsky, Jennifer R, Saydah, Sharon, Schmitt, Jochen, Guekht, Alla, Gorst, Sarah L, Genuneit, Jon, Reyes, Luis Felipe, Asmanov, Alan, O'Hara, Margaret E, Scott, Janet T, Michelen, Melina, Stavropoulou, Charitini, Warner, John O, Herridge, Margaret, Williamson, Paula R
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 04-02-2022; BioMed Central; BMC
• Subjects: Adult; Anxiety; Child; Cognition disorders; Cognitive ability; Complications; Coronaviruses; COVID-19; COVID-19 - complications; COVID-19 sequalae; Disease Progression; Fatigue; Geographical locations; Global health; Health care; Humans; Infection control; Infections; Jargon; Long COVID; Medical research; Mental depression; Methods; Opinion; Outcome Assessment, Health Care; Pandemics; PASC; Patients; Pediatrics; Post-acute sequelae of SARS-CoV-2 infection; Post-COVID-19 condition; Prevention; Public health; Risk factors; SARS-CoV-2; Severe acute respiratory syndrome coronavirus 2; Signs and symptoms; Viral diseases; United Kingdom; COVID-19; Post-COVID-19 condition; COVID-19 sequalae; Core Outcome Set; PASC; Long COVID; Post-acute sequelae of SARS-CoV-2 infection; Outcomes
• ISSN: 1741-7015; 1741-7015
• DOI: 10.1186/s12916-021-02222-y

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.
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.
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.