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1
Using Mixed Methodology to Develop
an Activity Pacing Questionnaire for
Chronic Pain/Fatigue
Dr. Deborah Antcliff
17th September 2015
2
 Background to activity pacing
 Background to mixed methodolgy
 Findings of the study
Aims:
3
Background to activity pacing
 Activity pacing is frequently advised to help
manage long-term conditions
 Some anecdotal support for activity pacing
 Mixed empirical findings (Andrews et al., 2012)
 Guidelines cannot wholly recommend pacing
(NICE, 2007)
 Absence of a widely used pacing scale
 ‘Activity pacing’ lacks a clear definition
4
What does pacing mean?
 “Energy management, with the aim of
maximising cognitive and physical activity,
while avoiding setbacks/relapses due to
overexertion” (NICE, 2007, p50)
 “The regulation of activity level and/or rate
in the service of an adaptive goal or goals”
(Nielson et al., 2012, p465)
5
What does that actually mean?
6
Aim and design of the study
Aim: Develop an Activity Pacing Questionnaire
(APQ) for chronic pain and/or fatigue
Design: Three stage mixed methods study
7
Mixed methodology
 Third research paradigm
 Combines quantitative and qualitative
methods
 Advantages
 Disadvantages
8
Study design
 Exploratory sequential design
• Stage I: Developing APQ items (qual)
• Stage II: Assessing APQ psychometric
properties (quant)
Additional stage:
• Stage III: Exploring APQ acceptability (qual)
9
Stage I. Developing items
 Consensus method: The Delphi technique
 Widely used in healthcare services
 ‘Rounds’ of questionnaires
 Expert panel
10
Stage I. Developing items
 3 Round Delphi technique
 Final expert panel: 4 patients, 3 nurses, 26
physiotherapists, 9 occupational therapists
 Round 1 generated 94 items
 Round 3 reduced this to 38 questions
• reached ≥70% consensus
• addressed a number of facets of pacing
• represented views of 6 other patients who completed
Round 1
11
Stage II: Psychometric properties
 Quantitative, cross-sectional study; self-report
questionnaires
 Sample=311 patients with chronic pain/fatigue
(target 300, recruitment rate=20%)
 Test-retest=69 patients (target 60, response
rate=50%)
 26-items with a 5-factor solution (5 ‘themes’)
 APQ demonstrated reliability (Cronbach’s
α=0.72-0.92), test-retest stability (ICC=0.50-
0.78, p<0.001) and construct validity.
12
Stage II. Five themes underlying APQ
Activity
adjustment
Activity
acceptance Activity
planning
Activity
consistency
Activity
progression
13
Stage II. Five themes underlying APQ
APQ Theme Example of question
Activity adjustment ‘I took a short rest from an activity so that
I could complete the activity later’
Activity planning ‘I planned in advance how long I would
spend on each activity’
Activity progression ‘I gradually increased how long I could
spend on my activities’
Activity consistency ‘I kept to a consistent level of activity
every day’
Activity acceptance ‘I was able to say “no” if I was unable to
do an activity’
14
Stage II. Properties of APQ themes
Key findings:
 Activity adjustment significantly associated with
• increased pain, anxiety, depression and
avoidance
• but decreased function
 Activity consistency significantly associated with
• decreased fatigue, anxiety, depression and
avoidance
• but increased function
15
Stage III. Acceptability study
 Semi-structured telephone interviews with 16
patients
 Qualitative data analysed using Framework
analysis
 APQ is generally acceptable to patients
 Agreement with the five themes of pacing
 Four behaviour typologies:
• Task avoidance, Task persistence, Task
fluctuation and Task modification (pacing)
16
How the 3 stages fitted together
Stage I: Developed the APQ items
Item generation and consensus
(sample: clinicians and patients)
Stage II: Psychometric properties
Assessed APQ reliability and validity. Identified themes
of pacing emerging from Stage I (sample: patients)
Stage III: Acceptability
Explored acceptability and confirmed findings of
Stages I and II (sample: patients)
17
Implications
 Activity pacing appears multifaceted
• Five themes: Activity adjustment, Activity
acceptance, Activity planning, Activity
consistency and Activity progression
 A comprehensive scale has been developed for
heterogeneous long-term conditions
 The APQ-26 can be used to measure the effects of
pacing to
• add empirical evidence
• measure patients’ changes in pacing behaviour/response
to treatment
• assess treatment efficacy
18
Questions?
Acknowledgements:
Prof. Philip Keeley
Dr. Malcolm Campbell
Dr. Steve Woby
Prof. Linda McGowan
Deborah.Antcliff@pat.nhs.uk
19
References
 Andrews, N. E., Strong, J. & Meredith, P. J. (2012) Activity pacing, avoidance,
endurance, and associations with patient functioning in chronic pain: a systematic
review and meta-analysis. Archives of Physical Medicine and Rehabilitation, 93, 2109-
21 e7.
 Antcliff D., Campbell M., Woby S., Keeley P. (2015) Assessing the Psychometric
Properties of an Activity Pacing Questionnaire for Chronic Pain and Fatigue. Physical
Therapy (ePub ahead of print).
 Antcliff, D., Keeley, P., Campbell, M., Oldham, J. & Woby, S. (2013) The development
of an activity pacing questionnaire for chronic pain and/or fatigue: a Delphi technique.
Physiotherapy, 99, 241-6.
 NICE (2007) Chronic fatigue syndrome/myalgic encephalomyelitis (or
encephalopathy). NICE Clinical Guideline 53. London.
 Nielson, W. R., Jensen, M. P., Karsdorp, P. A. & Vlaeyen, J. W. (2012) Activity pacing
in chronic pain: concepts, evidence, and future directions. The Clinical Journal of Pain,
29, 461-8.
 White, P. D., Sharpe, M. C., Chalder, T., DeCesare, J. C., Walwyn, R. & PACE group.
(2007) Protocol for the PACE trial: A randomised controlled trial of adaptive pacing,
cognitive behaviour therapy, and graded exercise as supplements to standardised
specialist medical care versus standardised specialist medical care alone for patients
with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy. BMC
Neurology, 7, 6-25.

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Let's Talk Research 2015 - Deborah Antcliff -Using Mixed Methodology to Develop an Activity Pacing Questionnaire for Chronic Pain/Fatigue

  • 1. 1 Using Mixed Methodology to Develop an Activity Pacing Questionnaire for Chronic Pain/Fatigue Dr. Deborah Antcliff 17th September 2015
  • 2. 2  Background to activity pacing  Background to mixed methodolgy  Findings of the study Aims:
  • 3. 3 Background to activity pacing  Activity pacing is frequently advised to help manage long-term conditions  Some anecdotal support for activity pacing  Mixed empirical findings (Andrews et al., 2012)  Guidelines cannot wholly recommend pacing (NICE, 2007)  Absence of a widely used pacing scale  ‘Activity pacing’ lacks a clear definition
  • 4. 4 What does pacing mean?  “Energy management, with the aim of maximising cognitive and physical activity, while avoiding setbacks/relapses due to overexertion” (NICE, 2007, p50)  “The regulation of activity level and/or rate in the service of an adaptive goal or goals” (Nielson et al., 2012, p465)
  • 5. 5 What does that actually mean?
  • 6. 6 Aim and design of the study Aim: Develop an Activity Pacing Questionnaire (APQ) for chronic pain and/or fatigue Design: Three stage mixed methods study
  • 7. 7 Mixed methodology  Third research paradigm  Combines quantitative and qualitative methods  Advantages  Disadvantages
  • 8. 8 Study design  Exploratory sequential design • Stage I: Developing APQ items (qual) • Stage II: Assessing APQ psychometric properties (quant) Additional stage: • Stage III: Exploring APQ acceptability (qual)
  • 9. 9 Stage I. Developing items  Consensus method: The Delphi technique  Widely used in healthcare services  ‘Rounds’ of questionnaires  Expert panel
  • 10. 10 Stage I. Developing items  3 Round Delphi technique  Final expert panel: 4 patients, 3 nurses, 26 physiotherapists, 9 occupational therapists  Round 1 generated 94 items  Round 3 reduced this to 38 questions • reached ≥70% consensus • addressed a number of facets of pacing • represented views of 6 other patients who completed Round 1
  • 11. 11 Stage II: Psychometric properties  Quantitative, cross-sectional study; self-report questionnaires  Sample=311 patients with chronic pain/fatigue (target 300, recruitment rate=20%)  Test-retest=69 patients (target 60, response rate=50%)  26-items with a 5-factor solution (5 ‘themes’)  APQ demonstrated reliability (Cronbach’s α=0.72-0.92), test-retest stability (ICC=0.50- 0.78, p<0.001) and construct validity.
  • 12. 12 Stage II. Five themes underlying APQ Activity adjustment Activity acceptance Activity planning Activity consistency Activity progression
  • 13. 13 Stage II. Five themes underlying APQ APQ Theme Example of question Activity adjustment ‘I took a short rest from an activity so that I could complete the activity later’ Activity planning ‘I planned in advance how long I would spend on each activity’ Activity progression ‘I gradually increased how long I could spend on my activities’ Activity consistency ‘I kept to a consistent level of activity every day’ Activity acceptance ‘I was able to say “no” if I was unable to do an activity’
  • 14. 14 Stage II. Properties of APQ themes Key findings:  Activity adjustment significantly associated with • increased pain, anxiety, depression and avoidance • but decreased function  Activity consistency significantly associated with • decreased fatigue, anxiety, depression and avoidance • but increased function
  • 15. 15 Stage III. Acceptability study  Semi-structured telephone interviews with 16 patients  Qualitative data analysed using Framework analysis  APQ is generally acceptable to patients  Agreement with the five themes of pacing  Four behaviour typologies: • Task avoidance, Task persistence, Task fluctuation and Task modification (pacing)
  • 16. 16 How the 3 stages fitted together Stage I: Developed the APQ items Item generation and consensus (sample: clinicians and patients) Stage II: Psychometric properties Assessed APQ reliability and validity. Identified themes of pacing emerging from Stage I (sample: patients) Stage III: Acceptability Explored acceptability and confirmed findings of Stages I and II (sample: patients)
  • 17. 17 Implications  Activity pacing appears multifaceted • Five themes: Activity adjustment, Activity acceptance, Activity planning, Activity consistency and Activity progression  A comprehensive scale has been developed for heterogeneous long-term conditions  The APQ-26 can be used to measure the effects of pacing to • add empirical evidence • measure patients’ changes in pacing behaviour/response to treatment • assess treatment efficacy
  • 18. 18 Questions? Acknowledgements: Prof. Philip Keeley Dr. Malcolm Campbell Dr. Steve Woby Prof. Linda McGowan Deborah.Antcliff@pat.nhs.uk
  • 19. 19 References  Andrews, N. E., Strong, J. & Meredith, P. J. (2012) Activity pacing, avoidance, endurance, and associations with patient functioning in chronic pain: a systematic review and meta-analysis. Archives of Physical Medicine and Rehabilitation, 93, 2109- 21 e7.  Antcliff D., Campbell M., Woby S., Keeley P. (2015) Assessing the Psychometric Properties of an Activity Pacing Questionnaire for Chronic Pain and Fatigue. Physical Therapy (ePub ahead of print).  Antcliff, D., Keeley, P., Campbell, M., Oldham, J. & Woby, S. (2013) The development of an activity pacing questionnaire for chronic pain and/or fatigue: a Delphi technique. Physiotherapy, 99, 241-6.  NICE (2007) Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy). NICE Clinical Guideline 53. London.  Nielson, W. R., Jensen, M. P., Karsdorp, P. A. & Vlaeyen, J. W. (2012) Activity pacing in chronic pain: concepts, evidence, and future directions. The Clinical Journal of Pain, 29, 461-8.  White, P. D., Sharpe, M. C., Chalder, T., DeCesare, J. C., Walwyn, R. & PACE group. (2007) Protocol for the PACE trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy. BMC Neurology, 7, 6-25.

Editor's Notes

  1. i.) Activity pacing is frequently advised as a coping strategy by health professionals, for example for CLBP, CWP and CFS/ME ii.) Anecdotal support both in literature and from my clinical experience iii.) Current evidence finds both associations between pacing and improved symptoms but also worsened symptoms. Systematic review, weak trends, paucity of studies Previous studies have utilised either limited pacing scales or no pacing scales. v.) Mention briefly the four existing scales with limited validity and content, not widely used, condition specific vi.) Activity pacing lacks consensus of definition and is interpreted in many ways
  2. …but what does that mean?
  3. Hare and tortoise=going ‘slow and steady’ Decreasing arrow=breaking down large tasks into smaller pieces, may involve a reduction in activities, not over-doing activities to reduce a potential flare up of symptoms Cup of tea=Using rest breaks, alternating activity with rest, (rest does not necessarily mean lying down) switching activities/positions Back pain=Listening to symptoms, stopping when the symptoms increase, i.e. symptom contingency, knowing when to stop, staying within your limits Stopwatch=continuing activities according to a quota, eg a length of time, distance or activity Diary=Planning, spreading activities over days, scheduling, assessing activities List=making lists, organising activities, prioritising Dartboard=hitting the same target/aiming for consistency in activities, doing a similar amount every day, avoid boom bust, i.e. underexertion-overexertion Increasing graph=finding a baseline and then trying to increase activities, gradually trying to do more, stepwise progression, increased tolerance Paula Radcliffe=setting achievable goals, doing something on a bad day, being flexible!! Others: negotiating, being assertive Is it just one of these things (unidimensional), or is it multidimensional? Is it doing less, or doing more? Is it symptom-contingent or quota-contingent? Therefore, there remain some uncertainties regarding pacing which may in part explain some inconsistent findings
  4. Therefore, there is existing confusion regarding what pacing means, and there is no way of measuring the different facets of pacing, among different patients-e.g. those with fatigue as their main symptom Develop a questionnaire that can be used in the clinical setting to measure how patients pace, heterogeneous group of patients so that it can be more widely used, measure the effects of pacing. Comprehensive so includes the different facets thought to be associated with pacing.
  5. Advantages: quantitative studies are historically believed to be the more robust methods and collect a large amount of data to increase the generalisability and reduce bias of the results. However, this is at the cost of detail to the individual. Therefore, combining adding qualitative methods to quant studies, increases the detail, and offers explanations to numerical information. Adding quantitative methods to qual increasese the generalisability and decreases bias. Disadvantages: labour intensive, some argue that the two paradigms cannot be mixed.
  6. Exploratory sequential design also called the scale development design
  7. i.) Purpose: develop the actual items for the APQ, so that the items were not driven from the ideas of the research team. Consensus technique since pacing has currently lacks a clear and agreed description. Therefore need consensus technique to gather ideas about what pacing involved. Delphi technique is a method widely used in the healthcare services to reach a consensus regarding a topic where there has previously been little or conflicting evidence
  8. i.) Purpose: develop the actual items for the APQ, so that the items were not driven from the ideas of the research team. Consensus technique since pacing has currently lacks a clear and agreed description. Therefore need consensus technique to gather ideas about what pacing involved. Delphi technique is a method widely used in the healthcare services to reach a consensus regarding a topic where there has previously been little or conflicting evidence
  9. i.) Following the development of the scale, the psychometric properties of the scale were assessed, to include the reliability, the validity and the themes of pacing contained within the APQ. In order to do this, the second stage of the study required a quantitative design, collecting data from self-report questionnaires. This included the APQ and two existing pacing subscales, together with validated measures of pain, fatigue, anxiety, depression, avoidance and physical and mental function ii.) Cross-sectional sample of patients with chronic low back pain, CWP, CFS/ME attending physiotherapy in The Pennine Acute Hospitals NHS Trust. Over 1600 were invited to participate-both current and retrospective patients (last 2 years)
  10. i.) Therefore, Activity limitation appears to be associated with worse symptoms ii.) Therefore, Activity consistency appears to be associated with improved symptoms Of note, these findings are correlative and not causal
  11. i.) APQ needs to be not only reliable and valid, but also acceptable for patients to ensure clinical utility. Acceptability interviews addressed low recruitment rate of patients into Delphi study. Increase service user involvement 16 patients from Stage II Semi-structured interview to explore the content of the APQ (the items and the themes of pacing), the format of the APQ, the scale, the recall period, the instructions. Interviews with patients who had experience of completing the questionnaire ii.) Framework analysis: Five stage process: familiarisation, identifying a thematic framework, indexing the data, charting the data, interpreting the data. Transparent and systematic process to increase rigour
  12. Why choose a three stage method? To address some of the limitations of the existing pacing subscales-items derived by limited/often researchers’ opinions Exploratory sequential design=scale development design Stage I: developed items from scratch using opinions of both clinicians and patients Stage II: developed the findings of Stage I. Stage II would not have been possible if the items had not been thoroughly developed in Stage I with input from clinicians and patients (unlike existing pacing subscales) Stage III required to provide rich data about acceptability. Furthermore, Stage III also brought out aspects of Stages I and II. Stage III explained and confirmed some of the findings from Stages I and II. Addressed low recruitment rate of Delphi of patients. The qualitative and quantitative stages complemented but also reinforced each other. Each stage validated previous findings, e.g. the themes of pacing (some conflict between symptom/quota contingency, speed of activities, pacing up), confirmed removal of some items, associations between APQ themes and pain, fatigue and explained some patterns in the interviews.