Preprint Sensibility of the Episodic Disability Questionnaire among adults living with Long COVID in Canada, Ireland, the United Kingdom & USA, 2026, Nathanson

[Chandelier]

Sensibility of the Episodic Disability Questionnaire among adults living with Long COVID in Canada, Ireland, the United Kingdom, and the United States

Spoiler: Authors

Nathanson, Julia; McDuff, Kiera; Brown, Darren A.; Carusone, Soo Chan; O'Hara, Margaret; Wei, Hannah; Avery, Lisa; Erlandson, Kristine M.; Stokes, Ruth; Townsend, Liam; Bannan, Ciaran; Goulding, Susie; Thomson, Catherine; Kelly, Mary; O'Connell, Sarah; O'Donovan, Imelda; Cheung, Angela M.; Bergin, Colm; Vera, Jaime H.; Harding, Richard; Clair-Sullivan, Natalie St.; Soares, Letícia; McCorkell, Lisa; Malli, Nisa; Roche, Niamh; Martin, Jessica; O'Brien, Kelly K.

Abstract​

Background: Persons living with Long COVID experience a range of health-related challenges that may fluctuate over time, known as episodic disability.
The Episodic Disability Questionnaire (EDQ) is a 35-item patient-reported outcome measure developed to assess presence, severity and episodic nature of disability across six dimensions: i) physical, ii) cognitive, iii) mental-emotional health, iv) difficulties with day-to-day activities, v) social inclusion, and vi) uncertainty about future health.
Our aim was to assess the sensibility of the EDQ among adults living with Long COVID.

Methodology: We conducted a two-phased sensibility assessment of the EDQ.
In Phase 1, we assessed the face and content validity of the EDQ by mapping items from the EDQ onto the Episodic Disability Framework, which conceptualizes the health-related challenges living with Long COVID.
Using the framework, we developed a 21-item Long COVID EDQ Supplement (LC-EDQ Supplement) for use in conjunction with the EDQ.
In Phase 2, we conducted a cross-sectional measurement study involving adults living with Long COVID in Canada, Ireland, United Kingdom, and United States.
We electronically administered the EDQ and LC-EDQ Supplement, followed by an 18-item sensibility questionnaire to assess face and content validity, ease of usage and format. Sensibility scores ranged from 1 (highly disagree) to 7 (highly agree).
We considered the EDQ and the LC-EDQ Supplement sensible if median sensibility item scores were ≥5/7 for ≥80% of items and if none of the items had a median score of ≤3/7.

Results: Of the 798 participants, most identified as female (82%), median age of 47 years (25th,75th percentile: 37, 56), and median of 2 years (1, 3) living with Long COVID.
The EDQ and LC-EDQ Supplement met the criterion for sensibility as determined by sensibility item responses >5/7 for 16/18 (89%) items on the sensibility questionnaire.

Conclusions: The EDQ and LC-EDQ Supplement demonstrated sensibility among this sample of adults living with Long COVID.
Results highlight the EDQ as a practical and feasible tool to assess the multi-dimensional and episodic nature of disability experienced among adults living with Long COVID.

Web | DOI | Research Square

 

[rvallee]

They compared a foot-based measurement system with another foot-based measurement system and the fact that they're close enough-ish means it's a reliable measurement system? Neat. One thing's for sure here: we don't have enough questionnaires. We need to reach at least a critical mass of one thousand questionnaires, then build up on, go from kiloquestionnaire to megaquestionnaire. And all the questionnaires need to relate to one another, with enough connections we could build a literal neural network of codependent questionnaires.

I recognize some of the names in the authors, and they are people who mean well, but I can't see the value in yet another questionnaire when none can be validated in a real sense. The idea that there must be a perfect questionnaire makes no sense, no science is done this way. There has never been a single scientific breakthrough that was achieved this way, not even a minor one.

We need objective measurements, anything less will be interpreted however people prefer them to be. Human judgment cannot be part of the equation, it's inherently unreliable and biased. In general, but especially here, where there is a mass of bad faith interpretation that completely overwhelms even the possibility of good faith efforts. I would trust a loaded gun in a toddler's hands before I would trust the medical profession to make competent use of such a questionnaire. I mean it, and I have to make it clear that I would have exactly 0 trust in the gun-toddler scenario.

 

[Utsikt]

In Phase 1, we assessed the face and content validity of the EDQ by mapping items from the EDQ onto the Episodic Disability Framework, which conceptualizes the health-related challenges living with Long COVID.

This is not what content validity means. Content validity is about how well your measurement aligns with the thing you’re trying to measure - in other words: are you measuring what you think you are measuring?

Because we do not know how to perfectly measure the things we’re trying to measure with this questionnaire, we rely on other attempts at measuring it. It becomes circular very quickly.

It’s like trying to make a measuring device that measures the amount of specific atoms stacked on top of each other - or height. Someone took a stick from their yard and wrote some numbers on it, based on their best guess. Then someone else took a stick from their yard and wrote some numbers on that as well.

Because the numbers were in about the same place as the first stick, the makers of the second stick claim that their measuring stick has excellent construct validity for measuring height. Yet none of them have any way of counting the atoms, so they have no way of knowing if their measuring sticks are actually right. They are just calibrating off each other.

Now throw in a lot more ambiguity, bias and humans, and you have questionnaires. Terribly unreliable, except at keeping the makers and users employed. Don’t mind the people they are being used at - the patient reported outcome says they are happy, or at least that’s how we read it.