Open Validation of Rest Inventory Questionnaire for adults with long term conditions with fatigue

Dolphin

Dolphin

Senior Member (Voting Rights)
[I haven't vetted this]

https://app.onlinesurveys.jisc.ac.uk/s/northumbria/rest-inventory-questionnaire-validation-study

Validation of Rest Inventory Questionnaire for adults with long term conditions with fatigue


I am inviting you to take part in a study to develop a new rest inventory measure for individuals with long-term conditions who are living with fatigue. The questionnaire was developed with individuals with long-term conditions and health professionals in the UK using a modified Delphi technique. This next stage is to further develop and test whether the questionnaire measures what it is supposed to and if it produces consistent result.

The study protocol was approved by the Northumbria University’s research ethics committee (reference: #3779).

Please read the Participant Information Sheet (PIS) to understand why the study is being done and what it will involve. See the link for the PIS: https://ibb.co/mTmbCdr
 
My rest involves reducing physical activity
My rest involves reducing mental activity
My rest involves stopping my activity completely
My rest involves sleeping
My rest involves detaching from my core activity
My rest involves reducing sensory stimulations (e.g., noise, light)
My rest involves engaging in relaxation activity (e.g. meditation)
My rest involves sitting/lying down
Rest recharges my energy
Rest helps me manage my fatigue.
Rest helps me perform my daily activities
Rest helps me improve my well-being
I find it difficult to rest during the day
Stress makes it difficult for me to rest
Anxiety makes it difficult for me to rest
Pain makes it difficult for me to rest
I find it difficult to stop and rest
Racing thoughts prevent me from resting better
I rest better in a serene environment.
I feel guilty when I stop to rest
I feel frustrated when I rest
My body needs rest
I take short breaks from activities, allowing me to complete them later
I prioritise self-care, including periods of rest
I plan specific periods of rest.
I schedule regular rest breaks throughout the day
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I quit my activities.
I confine myself to simple activities.
I take care that I don't have to exert myself physically.
I take a rest by sitting or lying down.
I take on a comfortable bodily posture.
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My motivation is lower when I am fatigued
Exercise brings on my fatigue
I am easily fatigued
Fatigue interferes with my physical functioning
Fatigue causes frequent problems for me
My fatigue prevents sustained physical functioning
Fatigue interferes with carrying out certain duties and responsibilities
Fatigue is among my three most disabling symptoms
Fatigue interferes with my work, family, or social life
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During the day I plan several moments to recover
I perform my activities at a slow pace
When performing my activities, I take my fatigue into account
When I’m engaged in an activity, I find it difficult to stop timely
I alternate intensive activities with less intensive activities.
I divide my activities over the day
I find it hard to limit my activities
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I rarely or never do any physical activity
I do some light or moderate physical activities, but not every week
I do some light physical activity every week
I do moderate physical activities every week, but less than 30 minutes a day or 5 days a week
I do vigorous physical activities every week, but less than 20 minutes a day or 3 days a week
I do 30 minutes or more a day of moderate physical activities, 5 or more days a week.
I do 20 minutes or more a day of vigorous physical activities, 3 or more days a week.
I do activities to increase muscle strength, such as lifting weights or calisthenics, once a week or more
I do activities to improve flexibility, such as stretching or yoga, once a week or more.
Click to expand...
I've seen worse, but a lot of the questions have ambiguous framing or simply rephrase other questions in a different way, and no way are those are all equal in value, so when they add up to a score, interpretation is arbitrary.

I don't even understand how anyone thinks that this methodology produces valid questionnaires when they can't compare to real answers. It's exactly like the problem of taxidermists who never saw the living animal trying to make a model using only their skin. They never saw the real animal, they don't know what it looks like, how could they manage to build it right?! And they have the skin and drawings, here they don't even have that.

Frankly, I think that building such questionnaires using this methodology is invalid. You may as well just throw question cards down some stairs and rank them based on where they fall and you're likely to get similar results.
 
'My rest involves sitting/lying down'

Oooh nooo - My rest involves jumping up and down for 10 minutes, then running round the house shouting and waving my arms around. If I am seriously resting I'll sprint to the end of the road and back, then do it again and again.
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This is just silly. What on earth useful information do they think they can get from a long list of sentences including the word 'rest', some of them sensible, some completely daft.

I assume they have designed some sort of grouping into symptom severity, behaviour, what you can and can't do, effect of rest, types of rest etc. But why?

Is this yet another PROM designed to jusify a rehab program?
 
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