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

Andy

Retired committee member
Background: The DePaul Symptom Questionnaire (DSQ) was developed to assess the symptomatology and case definition fulfillment of individuals with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). The questionnaire was recently revised to improve its psychometric properties, increase its diagnostic reliability, and assess symptoms required by case definitions. The resulting instrument was named the DSQ-2.

Purpose: The current study sought to evaluate the utility and reliability of the new and revised items in the DSQ-2.

Method: A cross-sectional sample of 399 adults with ME or CFS was recruited to complete the DSQ-2.

Results: Descriptive analyses of the DSQ-2 suggest that the new and revised items enhance the instrument’s ability to assess certain symptom domains and evaluate recent case definitions. Additionally, an exploratory factor analysis resulted in an eight-factor solution: post-exertional malaise, cognitive impairment, fever and flu, pain, sleep disruption, orthostatic intolerance, genitourinary issues, and temperature intolerance. The items within each factor demonstrated strong internal consistency reliability (Cronbach’s alphas = .73 – .91).

Conclusion: These analyses indicate that the DSQ-2 offers a more thorough and precise understanding ME and CFS symptomology and case definition fulfillment.
Paywall, https://www.tandfonline.com/doi/abs/10.1080/21641846.2019.1653471
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Participants report on the frequency and severity of ME and CFS symptoms over the past six months. Frequency of symptoms are rated on a 5-point Likert scale: 0 = none of the time, 1 = a little of the time, 2 = about half the time, 3 =most of the time, and 4 = all of the time. Similarly, severity of symptoms are rated on a 5-point Likert scale: 0 = symptom not present, 1 = mild, 2 = moderate, 3 = severe, 4 = very severe.
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.
 
Conclusion: These analyses indicate that the DSQ-2 offers a more thorough and precise understanding ME and CFS symptomology and case definition fulfillment.
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:
In summary, the DSQ-2 offers a thorough evaluation ofME and CFS symptomatology that may prove useful in medical and research settings.
 
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.
 
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.

I think Jason's group are one of the few to look at how to operationalize criteria whether in a clinical or research setting. Its a real issue with many of the criteria that it is easy to list symptoms but much harder for a doctor is know how to use the criteria and what the symptom criteria are (especially for GPs and non ME specialists). Some criteria have the same symptom names but different descriptions.

So I think the work on the DSQ is very important although I think it would be good to have other groups look at the problem to get multiple view points.
 
I think Jason's group are one of the few to look at how to operationalize criteria whether in a clinical or research setting. Its a real issue with many of the criteria that it is easy to list symptoms but much harder for a doctor is know how to use the criteria and what the symptom criteria are (especially for GPs and non ME specialists).

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.
 
I think Jason's group are one of the few to look at how to operationalize criteria whether in a clinical or research setting. Its a real issue with many of the criteria that it is easy to list symptoms but much harder for a doctor is know how to use the criteria and what the symptom criteria are (especially for GPs and non ME specialists). Some criteria have the same symptom names but different descriptions.

So I think the work on the DSQ is very important although I think it would be good to have other groups look at the problem to get multiple view points.
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.
 
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