The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID-19 syndrome, 2022, Sivan

This doesn't look too bad, as far as it goes.

Why it's called the 'rehabilitation scale' when it's really an assessment scale, and we don't have any evidence that anything that the clinics do actually makes a blind bit of difference to illness trajectories, I don't know. I guess it makes the rehabilitationists feel useful, and suggests to new patients that their compliance with what the rehabilitationsts suggests will lead to improvement.

Good that they added PEM. However, the devil is in the detail. The plan is that you get assigned to a clinic and they send out this survey for you to fill out on your own. The wording of the question about PEM therefore needs to be very good. There are people that you can ring up to help with the survey completion, but this article says that they didn't think that these people needed training, as the questions were self-explanatory, and could just be read out. So, hmm.

Good also that they included some measure of dysautonomia, although that is called 'dizziness and palpitations' which rather misses the whole orthostatic intolerance thing. I mean, feeling an overwhelming need to sit or lie down because you feel very unwell when standing (not to mention high resting heart rates, postural orthostatic tachycardia, inadequate control of BP - not all of which will necessarily be picked up by the clinic later). All of that has a substantial impact on perception of health.

I don't understand everything about what they are doing, and how the information is being summarised. It looks a bit like they think all of the answers to the questions can be added up and reported as overall health scores. Which leads me to a concern.

Throughout the article, there is talk of one condition, one syndrome. And that is just silly. There are the people who were seriously ill with covid-19, and who may have lung damage, may have residual effects from the treatments they were given, may have PTSD from not being able to breathe and thinking they were going to die. Those people and their rehabilitation needs are completely different from the people who had a mild illness and developed post-covid ME/CFS. And yet the authors who wrote this paper clearly seem to think long COVID is just one thing. I think that sort of thinking will have some very poor outcomes when it comes to the sorts of things the clinics do.

 

Here's the paper on the original version of the questionnaire:
The COVID-19 Yorkshire Rehabilitation Scale (C19-YRS): application and psychometric analysis in a post-COVID-19 syndrome cohort, 2021, O'Connor et al

 

Thanks MSEspe (I had missed the PEM section)

As a brief definition of PEM, that's pretty good.

On orthostatic intolerance:

Those still seem to miss the boat - throughout most of my illness, I would have answered 'no' to both of those, but I certainly have orthostatic intolerance, and some postural tachycardia.

 

I agree it's a pretty reasonable basic data collection to bring to your first appointment to help the patient note down what is particularly bothering them, and as a starting point for the case history taking by the clinician and subsequent diagnosis.

My problem with this sort of data is when you start adding up scores and creating single numbers for each category based on those scores. And even worse, using those numbers to assess whether a patient's health has improved or not, and as service evaluation tools.

Then I think you come unstuck, as someone can score more on symptoms by having a wide range of minor niggles than someone who has life changing fatiguability, OI and PEM, but few other symptoms that bother them enough to include them. Similarly some of the initial symptoms that are a hangover from the acute infection stage like breathlessness and loss of smell might subside, but be replaced with severe PEM and OI, so again, their symptom score might look better, but their health be much worse.

Also with long term disabling disease one inevitably has to make adjustments to lifestyle, and adapts to the new normal, so what you recorded at the beginning as severe impairment in function may, even if actually worse, be recorded as less bad.

And there's a ceiling effect even with a 4 point severity scale for each item, as I found when I first got ME and it was, I now understand, relatively mild. I would have scored myself at the maximum on several items of both symptoms and function then, as I didn't imagine how much worse they could get. So any worsening is not able to be scored.

I also object strongly to combining physical and psychological symptoms into a single score. I don't think that helps anybody understand or treat the disease or assess changes over time. Many psychological symptoms are not part of the disease process but the consequence of not getting sufficient support and adjusting to major life change. They should be assessed separately and their treatment if required should not be considered as part of treating the disease - just as giving someone psychological and practical support when they have arthritis or cancer is a psychological treatment and care provision, not a treatment of the disease.

 

Yes, exactly.

It's probably just a coincidence, but this reduction in the number of points in the scale will definitely help reduce the recognition of any harms caused by over-enthusiastic goal setting by clinicians. Possibly though, no matter how fine the scale, it is difficult for someone whose life has been turned upside down and feels incredibly awful to understand that their symptom severity probably only rates a 5/10 compared to someone with severe ME/CFS.

And so, it makes a self-report tool like this completely inappropriate for measuring disease progression, at either the individual or clinic level. For that we have to have objective measures.

 

I've just been re-reading a bit of the thread discussing the MEA project headed by @sarahtyson.

And I see that @bobbler pointed out that one of the researchers on that study was involved in the development of this scale

 

I honestly don't see the value in 'doing the stats' on this sort of qualitative subjective data. This whole field of developing measurement tools for conditions with multiple symptoms and functional limitations makes no sense to me. The only usefulness I can see for the questionnaire is as a starting point for medical consultation, highlighting areas for discussion, but they should be elicited by a good clinician anyway.
As we said when discussed before, it doesn't provide objective data on changes over time or overall severity, whatever algorithm is used to allocate and add up numbers.