A group of scientists from Sechenov University (Russia), Imperial College London (UK), King’s College London (UK), the University of Liverpool (UK), and Johns Hopkins University (US) has agreed on the aspects of Long COVID that need to be assessed across various studies.
Earlier, the World Health Organisation (WHO) called on the international medical community to prioritise research into the long-term consequences of COVID-19, including the collection of standardised data, proposing the term ‘Post COVID-19 Condition’ for people living with chronic symptoms — often also referred to as ‘Long COVID’. These patients present with a large number of symptoms occurring in a variety of combinations; the most common and impairing symptoms are fatigue, cognitive problems (such as ‘brain fog’), and shortness of breath. Despite evidence from the early stages of the pandemic about how common and disabling these symptoms are, little is known about their causes and best treatment options. The international scientific community is now focusing on this condition.
It is critical to develop a Core Outcome Set (COS) to standardise data collection in research — especially in clinical trials — and in clinical practice. The COS optimises the collation and comparison of data between studies and clinical services. Without standardisation, collection of quality data is much slower. Consequently, clinical and research communities involved in studying the Post COVID-19 Condition are joining forces with patient groups to respond to this emerging global healthcare crisis, by prioritising the accelerated development of a robust international consensus on what should be monitored in Long COVID.
These efforts have resulted in the Post COVID-19 Condition Core Outcome Set (PC-COS) study, in collaboration with the WHO, the International Severe Acute Respiratory and Emerging Infection Consortium (ISARIC), and methodology experts from the Core Outcome Measures in Effectiveness Trials (COMET) Initiative.
All stakeholders consider the following eleven outcomes critical: (1) survival; (2) fatigue; (3) pain; (4) post-exertion symptoms; and ‘functioning, symptoms, and conditions’ for (5) cardiovascular; (6) respiratory; (7) neurological; (8) cognitive; (9) mental/psychiatric systems; along with (10) overall physical function; and (11) work/occupational and study changes.
‘Recovery’ was also automatically included as an additional, twelfth outcome to maintain consistency with a previously published core outcome set for acute COVID-19.
This project complies with the COMET methodological standards and is available as a preprint here.
Professor of the Department of Paediatrics and Childhood Infectious Diseases at Sechenov University and co-head of the project, Daniel Munblit said:
We hope that our results will help improve the quality of data collected around the world and better understand the Post COVID-19 Condition. And this in turn will give us the opportunity to more effectively help the people suffering from Long COVID.