Measuring the physical activity level and pattern in daily life in ME-CFS

[Dolphin]

http://www.tandfonline.com/doi/full/10.1080/10833196.2017.1300624

Measuring the physical activity level and pattern in daily life in persons with chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review
Kuni Vergauwen, Ivan P.J. Huijnen, Astrid Depuydt, Jasmine Van Regenmortel & Mira Meeus
Pages 23-33 | Published online: 04 Jul 2017

• http://dx.doi.org/10.1080/10833196.2017.1300624
  

Chronic fatigue syndrome, Data collection, Physical activity, Psychometrics, Review

Background:

A lower activity level and imbalanced activity pattern are frequently observed in persons with chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) due to debilitating fatigue and post-exertional malaise (PEM).

To provide an optimal treatment strategy, insight into a patient’s current physical activity level and pattern is necessary and identification of reliable and valid measures or scales measuring physical activity level and pattern in this population is warranted.

Objective:

To identify measures or scales used to evaluate activity level and/or pattern in patients with CFS/ME and review their psychometric properties.

Methods:

A systematic literature search was performed in the electronic databases PubMed and Web of Science until 12 October 2016.

First, articles including relevant measures were identified.

Secondly, psychometric properties of relevant measurement instruments were extracted and rated based on the COSMIN checklist.

Results:

The review was performed and reported according to PRISMA statement. A total of 51 articles and 15 unique measurement instruments were found, but only three instruments have been evaluated in patients with CFS: the Chronic Fatigue Syndrome-Activity Questionnaire (CFS-AQ), Activity Pattern Interview (API) and International Physical Activity Questionnaire-Short Form (IPAQ-SF), all self-report instruments measuring physical activity level.

Conclusions:

The IPAQ-SF, CFS-AQ and API are all equally capable of evaluating the physical activity level, but none of these are optimal to use.

Although often used as gold standard to capture physical activity patterns, activity monitors have not yet been evaluated in these patients.

More research is needed to evaluate the psychometric properties of existing instruments, including activity monitors.

 

[Dolphin]

Although the abstract does not make it clear, they found the grand total of two papers one of which was by the corresponding author.

 

[Wonko]

So instead of asking pwME, or those responsible for their care, or the physicians treating them, they "googled" it - and this is research?

Wouldn't a graduate student be found guilty of plagiarizing under the current rules for this sort of thing?

 

[Snow Leopard]

So instead of asking pwME, or those responsible for their care, or the physicians treating them, they "googled" it - and this is research?

They did a systematic review and found no one has done the basic research that someone should have done 30 years ago.

 

[Stretched]

Wouldn't a graduate student be found guilty of plagiarizing under the current rules for this sort of thing?

Like, when it rains things outside get wet

 

[Dolphin]

PEM is one of the primary characteristics of CFS/ME and a main reason why patients with CFS/ME are unable to continue their daily routine.4,8,10,11 The presence of these exacerbations may result in avoidance of activities and prolonged periods of rest, expecting that this strategy will cause improvement.11,13,14 In contrast to this perception, this strategy instead results in decreased exercise tolerance and reduced ability to perform activities of daily living (ADL).3,9,11–14

There is not good evidence that I can think of that too much rest is a significant problem for people with ME/CFS

More criticism of patients:

Additionally, although most patients perform fewer, and mostly sedentary activities, bursts of exertion are sometimes observed in periods in which patients try to perform at pre-morbid level.6,14,15 This deviant activity pattern observed in some patients with CFS/ME may cause a negative feedback cycle where PEM, an overall lower activity level and imbalanced activity pattern are often observed.3,6,15,16

 

[Dolphin]

Thus, the activity level and pattern need to be established using reliable and valid measures or scales before a clinical practitioner can assess and evaluate a patient’s health status, provide information, a suitable treatment strategy and evaluate a patient’s course of recovery after treatment.3–5,9,28

Minor point: I dislike that the word "recovery" is used when it is a rare outcome.

 

[Dolphin]

Scheeres et al. (2009)

Patients scoring zero or one days of the 12 measured days above a reference score were defined as ‘passive’. Patients scoring two or more days above a reference score were defined as ‘fluctuating active’.

I don't find this very interesting. Some people could be passive because they are more severely affected. Also there is a big range in the group who could be described as "fluctuating active".

It is used in some Dutch CBT. The group who are said to be "fluctuating active" are allowed stabilise/reduce initially to find their baseline while those who are passive are told to simply increase from the start.

The study found that the three questionnaires/instruments were no good at accurately assigning people to either group based on the results of the actometers

e.g.

However, a high number of false predictions by all three measures were found when compared to an activity monitor. If patients are incorrectly identified as being active (scoring two or more days above a reference score) or passive (scoring zero or one days of the twelve measured days above a reference score) according to an activity monitor typology in clinical practice, they could receive inappropriate treatment which could lead to more functional and participation restrictions.85

 

[Dolphin]

Main results from the other study:

Meeus et al. evaluated the criterion validity by comparing the IPAQ-SF with an activity monitor and an activity diary.35 METs-minutes spent per activity category (sedentary, moderate and vigorous activity) were the outcomes that were compared between the three measures. Spearman’s rho varied between 0.282 and 0.426 (p = 0.05) indicating only weak correlations. Furthermore, the weak significant correlations were especially found in the moderate and vigorous activities. These were found to be irrelevant, because CFS patients rarely perform such activities. No correlations were found in the sedentary activities, which are the ones CFS patients perform the most.3

 

[Dolphin]

Minor points:

Self-reports might not be highly related to the actual, objectively measured, daily life activity level as measured with activity monitors. 4,9,35,36,42 A previous study by Vos-Vromans et al. found discrepancies between perceived daily activities and objectively measured daily activities in patients with CFS; however, the cause of this discrepancy in patients with CFS needs to be further investigated.37

Activity monitors on the other hand are known to be reliable and valid measures or scales to objectively evaluate a patient’s activity level in the general population,38 but their psychometric properties have not yet been evaluated with patients with CFS/ME.4,8,35–38 The reliability and validity depend on the device, population and the studied activity behaviour.29,35,39

First of all, the optimal place of attachment has not been established. The place of an activity monitor on the body influences its output and activity monitors worn on the lower body tend to underestimate activities of the upper body and vice versa.36,38,39

True, though one could always use more than one at the same time in the meantime.

 

[Dolphin]

Minor points:

Secondly, it is unknown when and for how long the activity monitor needs to be worn to obtain sufficient valid information for an accurate representation of a patient’s activity level. In patients with chronic pain, it is recommended to include more than three days, because they have large between-day variations in physical activity and need periods of rest between activities.84 Patients with CFS/ME also often have a fluctuating activity level, therefore inclusion of more than three assessment days and at least one weekend day can be useful to have an accurate representation of a patient’s activity level.

Third, the influence of an activity monitor on the behaviour of CFS/ME patients is also unknown. Some patients engage in reactive behaviour, which means changing their normal physical activity pattern when consciously wearing an activity monitor.40

True, though I imagine most patients with ME/CFS wouldn't be able to increase their activities for a sustained period.

 

[Dolphin]

Minor points:

Implications

Based on the evaluation of all measures or scales, their psychometric properties and further remarks, none of the three measures or scales should be used in isolation

The systematic literature search identified fifteen unique measures evaluating physical activity in patients with CFS/ME of which the psychometric properties are not or insufficiently known.

Recall over a long period of time should be avoided, due to the possible presence of cognitive impairments. The questions and answers ought to be simple without the possibility of subjective interpretation. Since patients with CFS/ME mostly perform sedentary and light activities, these should be the instrument’s focus.35

Because ambulatory monitoring assesses the physical activity pattern more accurately than a measure using retrospective self-report, Meeus et al. suggest the development of a kind of activity diary with daily registration, which minimizes recall bias as previously discussed.16,35 According to Wickel et al., self-report measures where the type, amount and intensity of physical activity can be recorded are the most used to measure physical activity levels.36

 

[Snow Leopard]

It still bothers me that they never bother to ask patients what we think would be most reliable. It's still all about the convenience of the researchers.

 

[Artstu]

It still bothers me that they never bother to ask patients what we think would be most reliable. It's still all about the convenience of the researchers.

Yep they're doing far too much talking, slap a couple of devices on PWME and healthy controls for a week, one on the ankle, one on the wrist and get some flipping data.

 

[RogerBlack]

Yep they're doing far too much talking, slap a couple of devices on PWME and healthy controls for a week, one on the ankle, one on the wrist and get some flipping data.

A fair number of the researchers, given actiometer data, would relegate it to supplemental figures, and report only on how the number made the patient feel.

 

[Valentijn]

It still bothers me that they never bother to ask patients what we think would be most reliable. It's still all about the convenience of the researchers.

Yes, it's interesting that the excuse of "it's too hard for the patients" has morphed into "we're too damned stupid to figure out how to use them."

 

[Dolphin]

I remember reading somewhere that Peter White (I think) said he didn't like to do the tilt table test on patients because of causing them distress

You and Yours - Transcript
BBC Radio 4
Transmited: 05/11/07

Source: http://www.bbc.co.uk/radio4/youandyours/transcripts_2007_45_mon_03.shtml

PROFESSOR WHITE
I think it has been a problem in understanding the cause of this illness. I think what happens with the heterogeneity is that one group of scientists finds one answer, say the immune abnormality in the illness, and another group independently comes along and perhaps are actually studying a different group of patients and therefore don't find the same thing. In terms of the issue about being all in the mind - I am a psychiatrist and I do not believe that ME's all in the mind, I think it's both physical and psychological. And we have to remember that our current understanding of neuroscience has advanced beyond the dualistic understanding this illness is either physical or psychological. Like many, many illnesses if I have something going on in my brain, such as thinking at the moment, that is a physical process happening in my brain and therefore if I have a feeling or a thought it is physical, it's not entirely psychological.

WAITE
If I could just interject to say one of the posts on the message board, Peter, says we should be using the Canadian guidelines criteria for ME which is more stringent and encompasses more of the wide ranging and truly debilitating symptoms of ME.

WHITE
So what are these guidelines and why aren't they used? Peter White, perhaps I can put that to you.

PROFESSOR WHITE
Well they're clinical guidelines and they're designed for use in clinical practice. The problem is - and the reason why I don't use them - is they're very complicated to use, will require me to actually do tests on my patients that I don't think are ethically - I should be doing on my patients and I don't find them useful. And if guidelines aren't useful then we don't use them. The problem is what we need is more research to understand what the illness is and that research is starting to take place now, I'm glad to say, and that's how we'll get our advances. And the other thing I'd like to make a point on, in terms of this controversy, there are some reasons for hope, which I think is really important that we share.

PROFESSOR WHITE
Such as the tilt-table test where in the Canadian guidelines the idea is that I would have to exclude the condition called postural hypertension, that is the fall of blood pressure when you stand up. And that is quite a complicated test and I don't think that's justified. I do a clinical test, as I'm sure probably Dr Weir does as well, where I measure the blood pressure when they're lying down and when they're standing, if they symptoms that suggests they get dizzy when they stand up. That is sufficient. And that is why the guidelines aren't useful.

WHITE
So you think they're unethical because they're too demanding?

PROFESSOR WHITE
Yes it's an unpleasant test, why should I put my patients through an unpleasant test that is unnecessary?