Studying the post-COVID-19 condition: research challenges, strategies, and importance of Core Outcome Set development, 2022, Munblit et al

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.

Open access, https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-021-02222-y

 

2 years later and I am still scratching my head wondering who the hell's job is it to do this anyway since no one seems to know. Physicians either demand such things, or complain that not having such things means they won't do anything for patients. Everyone is waiting, or calling for, someone, anyone, to do this.

Whose job is it actually to do such things? Because all evidence points to the fact that it's no one. Which really all feels like a search & rescue party where people come and go as they please, wandering around aimlessly until someone, maybe, stumbles on something.

It pretty much appears, from the outside, that there is simply no leadership in medicine, no one who makes decisions, those can always been kicked down the road. I don't get how such a system is even supposed to work because looking at the lousy outcomes it so often creates, I'm not sure it actually does work, seems more of a simple case of brute force and low expectations. And now that the easy stuff's been found and this process doesn't work for hard problems everything is just stuck in place waiting for technology to free people from making decisions.