Coming from stroke research, I have been thinking about whether more fields should change their focus from binary to ordinal outcomes to capture how people are doing some time after they became developed a disease. I discussed this with colleagues active in vascular medicine, which resulted in the development of a scale useful in thrombosis research described here. Then the pandemic hit, and we thought about whether we could adopt this scale to measure the Post COVID-19 Functional Status. We published this idea, which subsequently got some traction. The scale has 6 levels (including death) and we propose to measure this at discharge and 4 and 8 weeks after discharge/end of disease to capture the functional status of COVID-19 patients and so get more information on “long COVID-19″.
Just publishing this is not enough – we keep an updated list of people who use the scale, and we actively promote its use. But to be of use, just the paper is not enough. So we have written a manual, and we have been working with colleagues from around the world to get translations of the scale. So far, the scale is available in 22+ languages with more translations ongoing. All this additional information is available via our OSF project page. Also check out this post with some pointers on how you should “Know, be consistent and open about when, who, and how to count when you use the PCFS – do not forget the dead!“
bob siegerink 