Development of an activity pacing questionnaire for chronic pain and/or fatigue: a Delphi technique

[Dolphin]

I think this article (although not the abstract itself) gives quite an interesting insight into what "pacing" has come to mean among healthcare professionals in the UK. I say healthcare professionals as only four patients completed it* and they were recruited from a physiotherapy clinic so might have been influenced by how the term was used there and/or what they had been taught.

*They did ask 52 patients in total but for one reason or another only a small number completed the Delphi process.

The development of an activity pacing questionnaire for chronic pain and/or fatigue: a Delphi technique.

Physiotherapy. 2013 Sep;99(3):241-6. doi: 10.1016/j.physio.2012.12.003. Epub 2013 Feb 8.

Antcliff D, Keeley P, Campbell M, Oldham J, Woby S.

Source
Pennine Acute Hospitals NHS Trust, North Manchester General Hospital, Manchester M8 5RB, UK; School of Nursing, Midwifery and Social Work, University of Manchester, Manchester M13 9PL, UK. Electronic address: Deborah.Antcliff@pat.nhs.uk.

Abstract*

OBJECTIVE:

Activity pacing is frequently advised as a coping strategy for the management of chronic conditions (such as chronic low back pain, chronic widespread pain and chronic fatigue syndrome/myalgic encephalomyelitis).

Despite anecdotal support for activity pacing, there is limited and conflicting research evidence into the efficacy of this strategy.

There is no consensus on the interpretation of 'pacing' due to diverse descriptions, including strategies that encourage both increasing and decreasing activities.

Furthermore, at present, there are few validated scales to measure how patients pace their activities.

The aim of this study was to undertake the first stage in the development of a comprehensive tool that assesses the multi-faceted nature of pacing among patients with chronic conditions.

DESIGN:

Three-round Delphi technique.

PARTICIPANTS:

Expert panel based in the UK including patients and clinicians.

RESULTS:

The 42 participants who completed three rounds of Delphi included 4 patients, 3 nurses, 26 physiotherapists and 9 occupational therapists.

The 38 questions that reached consensus to be included in the questionnaire encompassed a number of different facets of pacing, for example, breaking down tasks, not over-doing activities, and gradually increasing activities.

CONCLUSIONS:

To our knowledge, this is the first study that has engaged both patients and clinicians in a Delphi technique to develop an activity pacing questionnaire.

In contrast to existing pacing scales, our questionnaire appears to contain a number of distinct facets of pacing.

Further study is being undertaken to engage patients in the exploration of the validity, reliability and acceptability of the questionnaire.

KEYWORDS:

Activity pacing, Delphi technique, Questionnaire


PMID: 23395263 [PubMed - in process]

Acknowledgements
We would like to thank all of the clinicians and patients who participated in this study, the Physiotherapy Pain Association and the Clinical Network Coordinating Centre for CFS/ME. Additionally, we thank the clinical and administrative staff at North Manchester General Hospital, Pennine Acute Hospitals NHS Trust for their support in this research.

*I've given each sentence its own paragraph

 

[Dolphin]

Participants

An expert panel was sought based on their expertise and diverse experiences to increase the content validity of the questionnaire [22,26]. Baker et al. [26] describe experts as including clinicians, together with patients and service users. The expert panel in the present study consisted of clinicians working in the field of chronic pain and/or fatigue in the UK (for example, nurses, physiotherapists and occupational therapists). Additionally, the panel included patients referred by a hospital consultant or GP to the physiotherapy departments of the Pennine Acute Hospitals NHS Trust with diagnoses of chronic low back pain, chronic widespread pain/fibromyalgia, and/or CFS/ME with symptoms for at least three months. All participants were aged 18 years or over, and had a good understanding of the English language.

Of the four patients who completed all three rounds of Delphi, one patient had a diagnosis of chronic low back pain, two patients had chronic low back pain and widespread pain, and one patient had fibromyalgia and CFS/ME (see Table 1: participant demographics).

Table 2

Top five and bottom five scoring questions (% voted to be included in the APQ).

Top five scoring questions
(to be included in the APQ)

I did not over-do activities on a ‘good’ day (100%)

I made sure I did some activity every day, even if I had a ‘bad’ day (98%)*

I changed my activity targets if they were unrealistic (95%)

I prioritised my activities for each day (95%)

I broke down activities into manageable pieces (93%)

--------

Bottom five scoring questions (to be excluded from the APQ)

I worked at a set speed on each task (5%)

I tried to maintain a level of activity that I had before the onset of my symptoms (12%)

I avoided working at levels of discomfort so that I did not increase my symptoms (17%)

I pushed myself to finish a task (22%)

I did my activities at a slower speed (22%)

The suggestion of encouraging doing something even on bad days is based on ideas of doing consistent amount, which is mentioned elsewhere also. I have big question marks over safety of this approach in ME.

Also, doing things at a slower pace (excluded) could also to me be part of pacing.

Only 37 of the 94 suggestions made the cut which suggests other useful parts of pacing could also have been excluded.

 

[Dolphin]

The questions that were voted to be included involve a number of different dimensions including

prioritising activities,

alternating activities,

incorporating planned rests,

gradually increasing levels of activities,

and setting goals

(see Table 2: top five and bottom five scoring questions).

Discussion:

[..]

The dimensions of pacing

As a result of the consensus technique, the APQ contains a number of distinct dimensions, such as balancing activity with rest, and undertaking a consistent amount of activity. This is concordant with existing literature that has described pacing as a strategy to use rest breaks to reduce an exacerbation of symptoms, and to avoid the cycle of underactivity–overactivity which commonly presents in chronic conditions [9,14,32]. Furthermore, the APQ contains items regarding breaking down tasks into manageable pieces and spreading activities over periods of time. Of note, questions that inferred an avoidance of activity were highlighted by the expert panel as describing avoidance, disparate from pacing. The panel did not vote to include questions referring to slowing down which coincides with the findings of the national activity pacing survey [16].

Both questions that refer to gradually increasing activities were voted to be included in the APQ. Two panel members queried whether ‘grading up’ or ‘pacing up’ is a separate construct from pacing. Indeed, Nielson et al. [12] suggested that this was a potential outcome of pacing. However, gradually increasing activities has been suggested to be a facet of pacing in more recent literature [15,16].

The APQ contains dimensions of planning and prioritising activities, alternating activities/positions and setting goals, which is consistent with existing literature [8,16,33]. The panel voted to include four questions regarding time-contingent activities, and only one symptom-contingent question (with a focus on changing activities as opposed to ceasing activities). This is in keeping with current literature in this field which recommends quota-contingent rather than symptom-contingent activities [14,16]. Additionally, the APQ contains novel ideas of using activity diaries, having a flare-up plan, being creative and assertive, using support, and assessing and accepting activity levels. Further exploration is required to confirm these dimensions as components of pacing.

Comparisons between the APQ and existing pacing scales

The APQ includes a greater number of dimensions than the aforementioned existing pacing scales [12,19,20]. The content of existing scales focuses on items that reduce activities, for example, slowing down, working at a steady speed, and avoiding heavy tasks [12,19,20]. The increased multi-faceted content of the APQ may reflect evolving opinions regarding the management of chronic conditions using CBT and GET. Furthermore, the existing scales were devel- oped from homogeneous panels, whereas we sought opinions from a heterogeneous panel.

 

[Firestormm]

Thanks Dolphin. I'd like to come back and review more closely when I am better able.

 

[Dolphin]

Misc. comments:

Patients, together with clinicians are considered to be experts in this field, as they possess unique experiences and knowledge [26,34–36]. Furthermore, involving patients at this stage of questionnaire development is beneficial to develop questions that are understandable to service users.

[26] Baker J, Lovell K, Harris N. How expert are the experts? An exploration of the concept of ‘expert’ within Delphi panel techniques. Nurse Res 2006;14(1):59–70.

[34] Murphy MK, Black NA, Lamping DL, McKee CM, Sanderson CF, Askham J, et al. Consensus development methods, and their use in clinical guideline development. Health Technol Assess 1998;2(3):i–i1.

[35] Sumsion T. The Delphi technique: an adaptive research tool. Br J Occup Ther 1998;61(4):153–6.

[36] Jackson A, Hettinga DM, Mead J, Mercer C. Using consensus methods in developing clinical guidelines for exercise in managing persistent low back pain. Physiotherapy 2009;95(December (4)):302–11.

---

It is of note that although consensus was reached, it cannot be assumed that the ‘correct’ decisions were reached [21–23,27].

 

[Dolphin]

I don't have the questionnaire text but the underlined bits in this gives a bit more information on the contents

http://www.physiotherapyuk.org.uk/visiting/programme/presentations/2364

Psychometric properties of an activity pacing questionnaire for chronic pain and/or chronic fatigue

Presented by:
Deborah Antcliff

Precis
Not yet given

Abstract
Co-authors: Professor Philip Keeley, University of Manchester
Dr Malcolm Campbell, University of Manchester, Dr Steve Woby, Pennine Acute Hospitals NHS Trust, Manchester

Purpose:

We have developed an activity pacing questionnaire (APQ) for chronic pain and/or fatigue using a Delphi technique.

The APQ appears to contain a number of different themes of pacing.

This study explored the presence of these themes, the reliability and validity of the APQ.

Relevance:

Physiotherapists frequently advise activity pacing.

However, different interpretations of pacing include both increasing and decreasing activities.

Existing pacing subscales have a focus on reducing activities, and have not been widely used.

Consequently the benefits of pacing remain unclear.

Participants:

Three hundred and eleven adult patients with chronic low back pain, chronic widespread pain and/or chronic fatigue syndrome/myalgic encephalomyelitis were recruited from a consecutive sample of patients attending physiotherapy currently or within the last two years.

Methods:

This cross-sectional, quantitative study, collected data from self-report questionnaires including the APQ and two existing pacing subscales. Sixty-nine patients completed test-retest questionnaires. Written consent was granted.

Analysis:

The underlying themes of pacing and internal consistency of the APQ were assessed using exploratory factor analysis. Test-retest reliability correlations were estimated, together with convergent validity against the existing pacing subscales.

Results:

The 30-item APQ formed a five-factor solution with high internal consistency: developing boundaries (α=0.93), active planning (α=0.89), gradually increasing activities (α=0.83), consistency (α=0.77), and self-assertion (α=0.72).

The APQ significantly correlated with the existing pacing subscales, and demonstrated moderate-high test-retest stability (r>0.5).

Conclusions:

Pacing appears to be multi-faceted, and the APQ reflects the facets of pacing to a greater extent than existing pacing subscales.

To increase service-user involvement, the acceptability of the APQ will be explored using qualitative interviews with patients. Future study will confirm the five-factor solution across other conditions.

Implications:

The themes contained within the APQ may facilitate more comprehensive instructions of pacing.

Physiotherapists can utilise the APQ to assess how patients pace their activities, patients’ progress, and treatment efficacy with a view to service development.

Keywords: Activity pacing, questionnaire, psychometric properties.

 

[biophile]

So the blurring of pacing and GET continues?

 

[alex3619]

They keep changing names and reworking definitions. Maybe we should change what we call pacing to some other name?

 

[Valentijn]

They keep changing names and reworking definitions. Maybe we should change what we call pacing to some other name?

How about "Definitely Not GET"?

 

[Sean]

I can't believe it's not GET.

 

[biophile]

Traditional pacing?

 

[alex3619]

Hmmm, some more thoughts. There is a presumption in the research itself. It possibly presumes that the validity of a pacing approach they come up with is equally valid for different disorders. That has yet to be demonstrated. However if its strictly used as a tool for starting discussion around individual patients, with individual case histories, then it may have some validity.

Like Dolphin, I have big issues with presuming safety when used in ME. There has never been a proper analysis of what safety actually means for ME, although the Harms paper comes closest. Its simply presumed that we respond like other disorders. The patient experience, patient problems, myriad patient case hysteries have not been used to assist even coming up with proper questions about how to assess harm from exercise in ME.

I am reaching the point where any study that does not seriously address the repeat VO2max testing in ME has little relevance. That research is now a decade old. Its time they took it into account, and passed time.

 

[Sean]

I am reaching the point where any study that does not seriously address the repeat VO2max testing in ME has little relevance. That research is now a decade old. Its time they took it into account, and passed time.

Their persistent failure to incorporate these kind of highly relevant and objective measures into basic ME research standards is, to me, clear evidence they are avoiding genuine science like the plague.

 

[Bob]

The patient experience, patient problems, myriad patient case hysteries have not been used to assist even coming up with proper questions about how to assess harm from exercise in ME.

But there have been a number of papers investigating post exertional symptomatic exacerbation, over the years.
They're just not as prolific as the authors pumping out the psycho-social research.
The meaningful research is swamped by the irrelevant research.

 

[Bob]

benign patient-led pacing ?

 

[Dolphin]

To be serious, "symptom-contingent pacing" explains a lot of what ME patients are looking for.

 

[Purple]

I am reaching the point where any study that does not seriously address the repeat VO2max testing in ME has little relevance. That research is now a decade old. Its time they took it into account, and passed time.

Alex - do you know when the first study on this was published? I.e. can you provide the link to it. I think the fact that this has been known for so long, is so remarkable and has not become integral part of ME science needs to be repeated regularly and often.

 

[alex3619]

Purple It was published in 2003 iirc, but I do not have a link handy. It was a Snell paper. However this was a first tentative finding. By 2009 or so it had gone way beyond tentative. I may have a look for a link, if I find one handy I will post it here.

PS VanNess JM; Snell CR, Strayer DR, Dempsey L, Stevens SR. Subclassifying Chronic Fatigue Syndrome through exercise testing. Med. Sci. Sports. Exerc. 35(6): 908-913, 2003. The protocol in the study used two or three tests, but weeks apart. I will have to find out which of their studies used a repeat test, I thought it was here but it isn't.

This is an even earlier one from 2000: http://cfids.org/archives/2000rr/2000-rr4-article02.asp

More links here: http://www.workwellfoundation.org/research-and-latest-news/

http://informahealthcare.com/doi/abs/10.1300/J092v14n02_07
This one talks about repeat tests 24 hours apart, in 2007.

 

[alex3619]

benign patient-led pacing ?

Patient Centered Pacing?

 

[Dolphin]

"Confusion about pacing" (August 28)
by
Ellen M. Goudsmit PhD, C.Psychol. FBPsS, who has written some papers on ME and pacing.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1308d&L=co-cure&F=&S=&P=9934