Engaging stakeholders to refine an activity pacing framework for chronic pain/fatigue: A nominal group technique -Antcliff, Keenan et al Nov 2019

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Engaging stakeholders to refine an activity pacing framework for chronic pain/fatigue: A nominal group technique
Abstract
Objectives
Due to the current absence of a standardized guide for activity pacing, the concept of pacing is interpreted in various ways by healthcare professionals, patients and researchers. Consequently, the effects of pacing across different conditions are unclear. The present study aimed to undertake the second stage in the development of an activity pacing framework for chronic pain/fatigue.

Methods
The newly developed activity pacing framework was refined using a consensus method. A nominal group technique (NGT) was selected to engage stakeholders to reach agreement on the top 10 priorities for inclusion in the framework and accompanying appendices. Participants included patients with diagnoses of chronic pain/fatigue and healthcare professionals working in fields of chronic pain/fatigue.

Results
Ten participants were recruited via purposive sampling: four patients, two physiotherapists, two occupational therapists and two psychological wellbeing practitioners. The top priorities for the pacing framework included a clear definition of pacing, and stating the aims and context of pacing. The appendices were refined as a teaching guide, including priorities of detailing the stages of pacing, the overactivity–underactivity cycle/pain cycle and goal setting.

Conclusions
Incorporating a diverse panel of stakeholders was an effective and inclusive method to refine the activity pacing framework. The framework has been purposefully designed for wider use across patients with chronic pain/fatigue and by various healthcare professionals. The framework provides a comprehensive definition, background and manual for healthcare professionals to instruct activity pacing. Further study will test the clinical usability of the framework, to enable the standardization of activity pacing in future investigations.
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https://onlinelibrary.wiley.com/doi/abs/10.1002/msc.1430

(not yet available on sci-hub)
 
That's a completely pointless exercise. It takes the two most common symptoms in all of medicine, both with entire ranges of different meanings and circumstances, and tries to find a universal framework. This is way over simplistic and essentially pointless because of the confusion that has polluted the entire field of medicine around those two symptoms.

Of course normally this kind of thing would be modulated by an understanding that there are exceptions but this is precisely one area where this fails miserably and universally in practice because it's far too generic and open to interpretation and boy is there a lot of interpretation going on about chronic symptoms, especially those two.

You can stop paving the road to hell. It's seriously over-paved as it is. It has so many layers of paving in fact that it's getting inoperable. Good intentions without common sense all lead to the same place.
 
PhysiosforME said:
for the twitter feed of our response

https://www.facebook.com/PhysiosforME/ for the longer version

There is a lot more we could say but have tried to get over key messages that would appeal to our physio/OT colleagues who might pick this up
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This is excellent. Thank you! Even if it doesn't lead to immediate change, it's important to have it out there, to add up to the evidence of how morally and intellectually bankrupt the entire BPS ME paradigm is. Opinions matter, but people should not be allowed their own facts.
 
It really is ridiculous that this 'study' is published in something you have to pay for access to.
In whose interest is it to put something on the internet in this form when one of the authors could have put it on a public website?
Who is this for? - I get the strong impression it is for the benefit of professionals, not patients.
 
Jonathan Edwards said:
It really is ridiculous that this 'study' is published in something you have to pay for access to.
In whose interest is it to put something on the internet in this form when one of the authors could have put it on a public website?
Who is this for? - I get the strong impression it is for the benefit of professionals, not patients.
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You also cannot write to respond to articles published in this journal - we tried!
 
ladycatlover said:
And WTF is "purposive sampling"?
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https://methods.sagepub.com/reference/encyclopedia-of-survey-research-methods/n419.xml

"A purposive sample, also referred to as a judgmental or expert sample, is a type of nonprobability sample. The main objective of a purposive sample is to produce a sample that can be logically assumed to be representative of the population. This is often accomplished by applying expert knowledge of the population to select in a nonrandom manner a sample of elements that represents a cross-section of the population."

So there you go then - no chance of any kind of selection bias there then! "Expert knowledge", "logically assumed". What could possibly go wrong :rolleyes:.
 
Would you believe it, Wikipedia tells us:

Nonprobability sampling does not meet this criterion and, as any methodological decision, should adjust to the research question that one envisages to answer. Nonprobability sampling techniques are not intended to be used to infer from the sample to the general population in statistical terms. Instead, for example, grounded theory can be produced through iterative non-probability sampling until theoretical saturation is reached (Strauss and Corbin, 1990).
 
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