The DePaul Symptom Questionnaire-2: a validation study, 2019, Sunnquist et al

Paywall, https://www.tandfonline.com/doi/abs/10.1080/21641846.2019.1653471
Not currently available via Sci hub

 

One thing they consistently miss is the effect of pacing. Somebody pacing well will report lower frequency and severity of symptoms than somebody not pacing at all, irrespective of severity.

 

I'm not sure I understand what that means. Does the DSQ have a practical purpose? Who is supposed to use it, in what situation, to what end?
The paper has this to say, but it's rather vague:

 

It's supposed to be used to assess whether one meets criteria for ME (mostly based on the CCC and possibly the ICC with some tweaks). Those using it would be researchers and possibly clinicians.

The 'eight-factor domain' roughly corresponds to the symptom requirements for the Canadian Consensus Criteria, although more loosely (e.g., fever and flu = immune, temperature dysregulation = neuroendocrine, etc).

Then there's a severity and frequency score used to assess whether symptoms occur at least half the time with moderate or worse severity. Again, this is a requirement of the CCC and ICC.

In research, this might confirm a clinician's diagnosis. In clinical settings, it might be used with exclusionary testing and a full work-up to confirm the diagnosis.

This latest version tweaks the questions, especially after Jason's survey on PEM led to some more specific questions being highlighted.

 

Absolutely right. We need a lot more work on operationalizing criteria. We are nowhere near where we should be on this. It’s essential for good, replicable research.

 

Yes, I can see that there are issues with just handing a set of diagnostic criteria to doctors and expecting them to be able to apply them correctly - and I am pleased somebody is working on developing better tools, they are sorely needed.

But I don't think the DSQ-2 is quite there yet. The two main issues I have with this instrument are

1) that it doesn't take into account the effect of pacing (as mentioned in my previous post #3) and

2) the description of PEM is insufficient. Yes, all the symptoms listed under PEM are relevant, but all the other separately listed symptoms typically also increase during PEM and that's not made very clear.

If anything needs operationalising from the existing diagnostic criteria it's PEM. That's the bit virtually nobody understands (and almost everyone confuses with common or garden exercise intolerance). Everything else shouldn't be a problem for doctors to recognise and tick off, maybe with a little additional guidance on severity. But PEM - that they need help with, and much more specific guidance than this instrument offers.

My impression is that this instrument has been devised by people who know their subject too well. They know what they mean, and the sort of experienced patients to give feedback also know what they mean, but they can't see any more how it reads through the eyes of somebody who knows nothing.

 

Open access at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7367506/