Survey of activity pacing across healthcare professionals informs a new activity pacing framework for chronic pain/fatigue, 2019, Antcliff et al

[Tom Kindlon]

Free full text:
https://onlinelibrary.wiley.com/doi/10.1002/msc.1421

RESEARCH ARTICLE
Open Access
Survey of activity pacing across healthcare professionals informs a new activity pacing framework for chronic pain/fatigue
Deborah Antcliff
Anne‐Maree Keenan
Philip Keeley
Steve Woby
Linda McGowan
First published: 20 August 2019
https://doi.org/10.1002/msc.1421


Funding information: Health Education England/National Institute for Health Research (HEE/NIHR), Grant/Award Number: ICA‐CL‐2015‐01‐019

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Abstract
Introduction
Activity pacing is considered a key component of rehabilitation programmes for chronic pain/fatigue. However, there are no widely used guidelines to standardize how pacing is delivered. This study aimed to undertake the first stage in developing a comprehensive evidence‐based activity pacing framework.

Methods
An online survey across pain/fatigue services in English National Health Service trusts explored healthcare professionals’ opinions on the types/uses of pacing, aims, facets and perceived effects. Data were analysed using descriptive statistics for closed‐ended questions and thematic analysis for open‐ended questions. Purposeful recruitment with a snowball effect engaged 92 healthcare professionals (physiotherapists, occupational therapists, nurses, doctors and psychologists) to the study.

Results
Pacing was highly utilized, with perceived long‐term benefits for patients (n = 83, 90.2% healthcare professionals instructed pacing). The most endorsed aim of pacing was “achievement of meaningful activities” (24.5% of ranked votes). The least endorsed aim was “to conserve energy” (0.1% of ranked votes). The most frequently supported facet of pacing was “breaking down tasks” (n = 91, 98.9%). The least supported facet was “stopping activities when symptoms increase” (n = 6, 6.5%). Thematic analysis showed recurring themes that pacing involved flexibility and sense of choice.

Conclusions
Pacing is a multidimensional coping strategy and complex behaviour. The message is clear that pacing should enable increases in meaningful activities, as opposed to attempting to avoid symptoms. The survey findings have informed the development of an activity pacing framework to guide healthcare professionals on the multiple components of pacing. This will help to standardize and optimize treatments for chronic pain/fatigue and enable future investigations.

 

[Tom Kindlon]

 

[NelliePledge]

Gradually increasing goes against the normal useage of pacing which is to maintain a STEADY pace to enable you to reach a goal without becoming exhausted before you reach it.

https://www.merriam-webster.com/dictionary/pace oneself

Gradually increasing is the therapist acting as a pacemaker- ie setting a pace for someone else.

 

[MeSci]

I note that they refer to 'chronic pain/fatigue', not chronic fatigue syndrome. Looks like another word is required for pacing that involves increasing activity, as opposed to the kind that is used properly in ME/CFS, which responds to fatigue by reducing/stopping activity, or which is carefully timed.

 

[Andy]

I note that they refer to 'chronic pain/fatigue', not chronic fatigue syndrome.

A multidisciplinary, biopsychosocial approach is recommended to manage complex conditions of chronic pain/fatigue, including chronic low back pain, chronic widespread pain, fibromyalgia and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) (British Pain Society, 2013; Kamper et al., 2015; National Institute for Health and Care Excellence, 2007).

And for bonus psychosocial babble points

Such conditions may be classified as somatic symptom disorders owing to the presence of physical symptoms (for example, pain and weakness) that disrupt daily functioning and are associated with altered thoughts, feelings or behaviours (American Psychiatric Association, 2013). In keeping with this classification, the impact of chronic pain/fatigue includes disability, anxiety, depression and altered behaviours such as fear avoidance, excessive persistence and overactivity–underactivity cycling (Abonie, Sandercock, Heesterbeek, & Hettinga, 2018; Kindermans et al., 2011; National Institute for Health and Care Excellence, 2007; van Koulil et al., 2010).

all in the first paragraph.

Looks like another word is required for pacing that involves increasing activity, as opposed to the kind that is used properly in ME/CFS, which responds to fatigue by reducing/stopping activity, or which is carefully timed.

Well, another, more accurate, phrase would be graded activity, but they've learnt that many patients have got wise about anything they call graded, so they just lie and call their graded activity pacing.

@PhysiosforME , I'm afraid what we tend to see from your colleagues and related professionals is the worst kind of deceitful behaviour. Aren't all patients meant to be able to give informed consent to any treatment that they receive?

 

[Trish]

I haven't read the paper beyond the abstract, but a glance through the references listed at the end shows the great majority are about rehabilitative exercise for chronic pain. The few about ME/ CFS are PACE and the Cochrane Exercise for CFS review and the NICE guidelines.

And why would a survey of therapists be the basis for developing a best practice guide. All their survey shows is that for ME, the majority have the concept of pacing completely wrong. What they are describing is GET. It is dishonest to tell patients this is pacing.

 

[rvallee]

The least supported facet was “stopping activities when symptoms increase” (n = 6, 6.5%)

Literally what pacing means and it's the least supported. What this is otherwise describing here is the opposite of pacing.

As usual this would be relatively OK if it avoided making baseless claims that this applies to ME. But it still makes it out to be this complex thing when it's not. There is nothing profound behind this, it comes naturally from patient experience and it requires no significant expert input. Might as well make a whole undergraduate-level class on how you "should put the garbage in the garbage can".

What a complete mess. The psychosocial ideology has been like a grenade in the system. Actually, strike that, make it a chronic onslaught of grenades randomly chucked around with no aim or purpose.

 

[JohnM]

..

Well, another, more accurate, phrase would be graded activity, but they've learnt that many patients have got wise about anything they call graded, so they just lie and call their graded activity pacing.

"Grading Activity Manual - (Reprinted with permisssion from Fighting Fatigue: a practical guide to managing the symptoms of CFS/ME)" - is the title of a handout issued by the Leeds & West Yorkshire CFS/ME Service in 2012. Fighting Fatigue was written by Pemberton S and Berry C, Hammersmith Press, 2009. Since Sue Pemberton set up the Yorkshire Fatigue Clinic, I strongly suspect that what is now referred to as the STEP Programme, is essentially a renaming of Grading Activity. I also think that the graphic on the Clinical Services for CFS/ME page, pretty much shows how they continue to view CFS/ME .. the usual conflation of fatigue and CFS/ME to my mind, but I'll leave others to judge for themselves.

..

And why would a survey of therapists be the basis for developing a best practice guide. All their survey shows is that for ME, the majority have the concept of pacing completely wrong. What they are describing is GET. It is dishonest to tell patients this is pacing.

An extract from the Grading Activity Manual as above Trish ..

The word 'grading' means to arrange in degrees and to reduce to easy gradients (Oxford English Dictionary, 1998). This is different to 'pacing' which means to set the pace or measure for a distance. The difference between pacing and grading is that setting a pace or speed for activities is an important part of setting a baseline for fatigue, and grading implies movement of progression through levels of activity.

.. There is no set formula for each increase, in the same way as the starting point is different for everyone. We can not just say, for example, increase each activity by five minutes each week, as this does not take account of how you respond to each increase and whether this is too big a step for you.

It is important to understand that the pattern of grading activity is like a staircase, not a slope. Whenever an increase in activity is made this level needs to be maintained before another increase is added. This is important as the condition often has a fluctuating pattern. If you make increases during periods of improved energy, then you can not keep this going when your energy levels reduce. This can increase the 'boom and bust' effect.

It was quite entertaining to note in the booklet how to grade and breakdown activity .. discusses time, distance, speed, strength, resistance, rest and complexity. Of the first two, its all about increasing time spent on any activity, and how to increase distances covered with activities such as walking, swimming, driving, and the like, i.e. GET-lite, given the absence of a structured weekly increase in activity level/s? Worry not, if you have 'relapses or setbacks', or have reached a 'plateau', they had other manuals for dealing with them.

Apologies on a long post .. one of these days, hehe! Wishing everyone improved health and every happiness. John x

 

[shak8]

Why is it assumed by medical people that the patient is too dumb to figure out how much she is able to do and what she should refrain from doing? What happened to the concept of learning from patients or is that only done in certain types of nursing research.

Why is it that medical people believe they know more than patients about the patient's own body? Sounds like these rehab clinics push people into doing more than they should be doing.
Do the clinics think we are all laggers?

 

[Barry]

The most endorsed aim of pacing was “achievement of meaningful activities” (24.5% of ranked votes). The least endorsed aim was “to conserve energy” (0.1% of ranked votes). The most frequently supported facet of pacing was “breaking down tasks” (n = 91, 98.9%). The least supported facet was “stopping activities when symptoms increase” (n = 6, 6.5%).

Endorsed by who? Therapists? Patients? ME patients?

 

[rvallee]

Why is it assumed by medical people that the patient is too dumb to figure out how much she is able to do and what she should refrain from doing? What happened to the concept of learning from patients or is that only done in certain types of nursing research.

Why is it that medical people believe they know more than patients about the patient's own body? Sounds like these rehab clinics push people into doing more than they should be doing.
Do the clinics think we are all laggers?

I was thinking about that recently...

It used to be that doctors were the only educated people. At all. No one else was educated about anything, besides clergy anyway. Before the scientific revolution, even scientists were basically tinkerers and general natural philosophers. The vast majority of the population was illiterate and the only otherwise educated people were either generalists, with a minimal understanding of history and philosophy, or number crunchers, like engineers.

It really seems like this historical artifact continues to this day, that the beliefs that were more or less justified at the time, that everyone but doctors were drooling idiots, is still part of the culture and thinking because medicine never had to adjust its culture despite massive societal changes. It just had too much weight and no pressure to change.

I'm not sure if medical training still teaches that doctors are the only smart people to have ever existed, but in practice it's a distinction without a difference considering how hostile they behave towards any input that isn't from other medical professionals. It's frankly hard to argue otherwise considering how automatic the contempt for patient experience is.

Seems like an anachronistic artifact of history that is simply very slow to be dispelled. Unfortunately it has very lethal consequences, but otherwise there seems to be little interest in changing this.

 

[AliceLily]

Why is it assumed by medical people that the patient is too dumb..

The only recommendation for ME should be to rest. Patient's aren't stupid, we know how important exercise and getting the body moving is. But when it come to ME, the ceiling for exertion is so low that it is harmful to recommend exercise. Exertion should always be at the patient's discretion.

My severe years were hideous with very hard hitting PEM's because I was having to out in an very ill state to attend to things. I was overdoing it so much and because of this, as I said, I suffered years and years of PEM's that were unbearable. I also had the double hit of severe brain/cognitive symptoms with my ME. Head pain which I still get at moderate level and flares up very easily.

 

[BruceInOz]

Endorsed by who? Therapists? Patients? ME patients?

Just a bit before it said

Methods
An online survey across pain/fatigue services in English National Health Service trusts explored healthcare professionals’ opinions on the types/uses of pacing, aims, facets and perceived effects.

So it's therapists opinions.

 

[WillowJ]

Just a bit before it said

So it's therapists opinions.

Polling healthcare professionals is kind of useless after they have made a point of giving out incorrect information.

 

[Jonathan Edwards]

I agree this is terrible. The fact that something like this has been published is an indication of just how little health care workers involved understand gathering a meaningful evidence base and also the serious ethical implications of misrepresenting medical knowledge to patients.

This study aimed to undertake the first stage in developing a comprehensive evidence-based activity pacing framework.

It certainly should do nothing of the kind. There is no evidence base involved, simply beliefs.

I have noted in my evidence to NICE that there is a serious problem with therapists confusing the aim of treatment (being able to do more) with the mode of treatment (doing more). They are not the same. Unfortunately it seems that the culture in physiotherapy is too uncritical to be of any use to anyone.

 

[Hoopoe]

Their assumption is that it's a behavioural problem (low activity levels), and that changing behaviour (higher activity levels) means having successfully treated the patient.

This sort of analysis is just too simplistic. Being able to increase activity levels is no good when it soon leads to a painful relapse where the patient then does even less than before.

 

[Jonathan Edwards]

It is noteworthy that the first author is funded as a lecturer by NIHR, presumably to do this sort of 'work'.
The system really is in a mess.

 

[JaneL]

Looks like another word is required for pacing that involves increasing activity

But we already have a term for this - it’s called graded activity

 

[PhysiosforME]

And for bonus psychosocial babble points


all in the first paragraph.


Well, another, more accurate, phrase would be graded activity, but they've learnt that many patients have got wise about anything they call graded, so they just lie and call their graded activity pacing.

@PhysiosforME , I'm afraid what we tend to see from your colleagues and related professionals is the worst kind of deceitful behaviour. Aren't all patients meant to be able to give informed consent to any treatment that they receive?

All I can really say at the moment is we have a lot of work to do to educate our colleagues..... Adding this to the list!

 

[PhysiosforME]

We've talked about this in our group and plan to make a formal comment about it. But first we need to thoroughly read through it, check out some of the references and we hope to make contact with the authors too. We will keep you updated as we go.