Questionnaire research: Identify questionnaires of interest and investigate licensing/purpose

[manciniedoardo]

Background Information

Two possible questionnaire datasets specific to our TA are the UWQoL (Impact of Weight on Quality of Life) and TFEQ (Three-Factor Eating Questionnaire), but there could definitely be others.

Let's use this issue to share our research findings around each of the questionnaires. This could include:

• Licensing (are they free to use)?
• Why these questionnaires are of interest for admiralmetabolic
• When implemented in something like an ADQS, are there any steps that are non-standard or unique to these questionnaires? This could be special computed scores, special processing, etc.

Please share any findings as soon as you have them to not duplicate any work.

Definition of Done

Obtain a detailed understanding of each of the questionnaires, enabling us to set out

• what test data we need to create
• what templates we need to create
• what vingettes we need to create
• why we are doing this, i.e. what is unique to the TA that warrants inclusion into {admiralmetabolic}?

[AndersAskeland]

I've been trying to investigate UWQoL, and it appears to have a restrictive license. The licence is held by Pattern Health . It is no specific information about open source use, but a "Reference work entry" states that the licensing fee varies according to use. Hence, if we decide that this questionnaire is relevant, someone would need to contact Pattern Health.

Furthermore, there seems to be several versions, where there is one specifically developed for clinical trials (IWQOL-Lite-CT). Pattern Health's website also states "FDA qualification for the IWQOL-Lite-CT is being sought for use in clinical trials to support product-labeling claims in new obesity treatments, including medications.".

[manciniedoardo]

I've been trying to investigate UWQoL, and it appears to have a restrictive license. The licence is held by Pattern Health . It is no specific information about open source use, but a "Reference work entry" states that the licensing fee varies according to use. Hence, if we decide that this questionnaire is relevant, someone would need to contact Pattern Health.

Furthermore, there seems to be several versions, where there is one specifically developed for clinical trials (IWQOL-Lite-CT). Pattern Health's website also states "FDA qualification for the IWQOL-Lite-CT is being sought for use in clinical trials to support product-labeling claims in new obesity treatments, including medications.".

Thanks @AndersAskeland - if @Sonali-netizen or someone else confirms that this is an important scale then maybe we could investigate further and contact them.

[Sonali-netizen]

IWQOL-Lite-CT is used in Obesity related clinical trials, but it could also be used for other metabolic related treatments/medications so having this scale would be helpful. The important part of this questionnaire is the calculation of composite scores.

[manciniedoardo]

IWQOL-Lite-CT is used in Obesity related clinical trials, but it could also be used for other metabolic related treatments/medications so having this scale would be helpful. The important part of this questionnaire is the calculation of composite scores.

How are the composite scores calculated @Sonali-netizen?

[Sonali-netizen]

These composite scores are calculated based on the responses to the questions. The responses are categorized and mapped to a number, for instance, a response 'NEVER' would be mapped to 1 and 'ALWAYS' to 5. Considering these numerical values, the AVAL is calculated by taking 100 times the result of the expression: the difference between the maximum response scale value and the mean, divided by the difference between the maximum response scale value and the minimum response scale value. We need to check if there are other variations to this derivation.

[manciniedoardo]

@Sonali-netizen thanks. Perhaps you could check:

• Whether there are indeed any other variations to this derivation
• To what extent this is covered in {admiral}'s standard questionnaire vignette

The latter point would inform whether we'd need a fully separate vignette/template or could just lean into existing documentation/template.

It would be good to evaluate this as soon as possible so that we can then decide if we should contact pattern health as mentioned by @AndersAskeland.

[manciniedoardo]

@Sonali-netizen any updates on this?

[manciniedoardo]

Update: the IWQoL-lite-CT questionnaire was discussed in today's team call.

• It was noted that this should be our primary questionnaire of focus for {admiralmetabolic}
• We still need to identify the extent of programming required for an ADaM dataset (@Sonali-netizen , Mikkel, @AndersAskeland to help out on this front)
• We need to contact Pattern Health and request permission to set up test data (@manciniedoardo to do this)

[Sonali-netizen]

@Sonali-netizen any updates on this?

I looked up the standard questionnaire vignette and none of the cases/questionnaires discussed in that can be used for IWQoL. We would need to write a function for the computation of scores part, as the IWQoL questionnaire would have 20 questions and maybe all of them would be answered or only some of them would be answered. Depending on that we need to calculate the composite scores and then transform the composite average to the 0-100 scale. The compute_scale may come close to what we would require for IWQoL but then for the transformation of the composite average, there is an algorithm involved.

[manciniedoardo]

Thanks @Sonali-netizen - good to know!

[manciniedoardo]

Hi all, as an update, I met with representative from Pattern Health (IWQOl-Lite-CT license holder). They confirmed both the questionnaire questions and the method of analysis are intellectual property. As such they are unlikely to give go ahead to include any test data or reveal how analysis should be done (final confirmation soon). Once the confirmation comes through we can just close this issue.

[AndersAskeland]

That is too bad about the IWQOI questionnaire.

I guess we still have the possibility of pursuing the three factor eating questionnaire (TFEQ). While I can't find any specific information about the licencing for that, at least it appears to be publicly available, and we might have better luck with getting permission to use it.

Are you also familiar with this questionnaire @Sonali-netizen ? If yes, do you think it should be something we should pursue, or which can be handled by base Admiral functions?

[kathrinflunkert]

That's really unfortunate regarding the IWQOI questionnaire.

We are not using the three factor eating questionnaire (TFEQ) but rather the Control of Eating Questionnaire (CoEQ) which seems to be available without licencing: https://licensing.leeds.ac.uk/product/control-of-eating-questionnaire-coeq Are you using this one as well?

[AndersAskeland]

I am not entirely sure, perhaps @starnas or @Sonali-netizen know?

[manciniedoardo]

@starnas @Sonali-netizen any updates on this?

[Sonali-netizen]

No, I have not worked on the TFEQ questionnaire.