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, С. Н. Авдеев, Frederikus A. Klok, Allison Tong, Janet Dı́az, Wouter De Groote, Nicoline Schiess, Athena Akrami, Frances Simpson, Piero Olliaro, Christian Apfelbacher, Régis Goulart Rosa, Jennifer Chevinsky, Sharon Saydah, Jochen Schmitt, Alla Guekht, Sarah L. Gorst, Jon Genuneit, Luis Felipe Reyes, A. I. Asmanov, Margaret O’Hara, J. T. Scott, Melina Michelen, Charitini Stavropoulou, John O. Warner, Margaret S. Herridge, Paula Williamson
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.