The development of an activity pacing questionnaire for chronic pain and/or fatigue: a Delphi technique
Introduction
Patients with chronic conditions, for example, chronic low back pain, fibromyalgia/chronic widespread pain and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) are frequently referred to the healthcare services [1], [2], [3]. Patients with the above conditions present with a complexity of symptoms to include pain, fatigue, emotional distress and reduced physical activities [1], [2], [4], [5].
The underlying causes of chronic conditions cannot always be medically explained. Therefore, the focus of treatment involves the promotion of self-management strategies and rehabilitation as opposed to cure-seeking [2], [3]. Specifically, there is growing evidence recommending cognitive behavioural therapy (CBT) and graded exercise therapy (GET) for the management of these complex conditions [4], [5], [6], [7], [8]. Activity pacing has been suggested to be a key aspect of both CBT and GET [6], [9], [10], [11].
Activity pacing involves modifying behaviour, with the aim of improving activity levels and managing symptoms whilst reducing relapses [1], [8], [12]. Despite the frequent use of activity pacing and anecdotal support, there is little and conflicting empirical evidence regarding the benefits of pacing [1], [12], [13].
Previous exploration into the effects of pacing has produced inconsistent findings, which may in part be explained by the different interpretations of pacing [9], [14].
Pacing has been described as adaptive pacing therapy, which encourages patients to adjust to their condition and stay within limited amounts of energy by alternating activities and incorporating rest periods [7]. Alternatively, pacing has been described as involving a gradual increase in activities [15], [16], [17]. Activity pacing may involve goal setting, and speeding up activities rather than slowing down [8], [16]. Pacing has been described as involving both strategies that lead to an increase and a decrease in activities and it is suggested that pacing is a multi-faceted construct. As such, pacing appears to be an apposite strategy to manage the fluctuating symptoms that are associated with chronic conditions [8], [10], [18]. Specifically, pacing could involve reducing activities on days of over-exertion together with increasing activities on days of under-exertion to achieve more consistent activity levels and prevent exacerbations of symptoms [8], [10], [18].
Despite the theoretical benefits of pacing, at present the empirical evidence regarding the effects of pacing is somewhat lacking. This may be due to the current absence of a widely used measure of pacing. Previous attempts at developing scales include the pacing scales of the Coping with Rheumatic Stressors Questionnaire [19], the Chronic Pain Coping Inventory [12], and the Pain and Activity Relations Questionnaire [20]. However, the existing scales have limited validation for specific conditions, that is, rheumatic conditions, fibromyalgia and chronic pain respectively. Consequently, there is no pacing scale for patients who suffer with fatigue as their predominant symptom. Furthermore, the existing scales are limited by the absence of a clear outline of their development process, and by the content of the scales being driven by homogeneous opinions or from clinical observations of pacing [12], [19], [20]. Moreover, the existing scales contain between six and ten questions that focus on avoiding or reducing activity. Since none of the existing scales include aspects of increasing activities, it is questionable whether they explore the multi-faceted nature of pacing.
The aim of this study was to develop an activity pacing questionnaire (APQ) that can be used widely among patients with chronic pain and/or fatigue. In order to address the limitations of existing pacing scales, this article outlines the Delphi technique that was implemented to develop the APQ. A panel of both patients and clinicians were involved in the Delphi technique to try to capture the multi-faceted nature of pacing, and to reach a consensus of the main themes of pacing.
Section snippets
The Delphi technique
The Delphi technique was selected to develop the APQ due to its value in achieving a consensus of the most important features of a topic which has previously had a limited or inconclusive definition [21]. The Delphi technique is a recognised method of decision-making that is widely employed in the health sciences [22]. It is an iterative process in which an expert panel receive ‘rounds’ of information on which they vote to reach a consensus [22].
Round 1 of the Delphi technique frequently
Response rates
Of the 106 potential panel members invited to participate in the study, 56% consented and returned Round 1. The response rates between Rounds 1 and 2, and Rounds 2 and 3 were 76% and 93% respectively. Four clinicians and one patient withdrew from the study due to personal reasons or other commitments (see Fig. 1: response rates).
Participants
The 42 participants who completed all three rounds of Delphi consisted of 4 patients, 3 nurses, 26 physiotherapists and 9 occupational therapists. The ratio of
Discussion
At present, pacing is a poorly defined construct and there is no existing pacing scale that captures the different dimensions of pacing. This article details the first stage of the development of a new activity pacing questionnaire.
Conclusion
A comprehensive, multi-faceted activity pacing questionnaire has been developed using a Delphi technique. A heterogeneous panel of clinicians and patients reached a consensus of the questions to be included in the APQ. As a result, the questionnaire assesses an increased number of pacing dimensions in comparison to existing scales. Further studies are currently being undertaken to investigate the psychometric properties of the APQ.
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.
Ethical approval: Ethical approval was granted by the Oldham Research Ethics Committee (Ref. No.: 09/41011/49) and the University of Manchester. NHS
References (37)
- et al.
Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial
Lancet
(2011) - et al.
A cognitive-behavioural programme for the management of low back pain in primary care: a description and justification of the intervention used in the Back Skills Training Trial (BeST; ISRCTN 54717854)
Physiotherapy
(2010) - et al.
An activity pacing scale for the chronic pain coping inventory: development in a sample of patients with fibromyalgia syndrome
Pain
(2001) - et al.
A structured review of the evidence for pacing as a chronic pain intervention
Eur J Pain
(2009) - et al.
Do patients with chronic low back pain have an altered level and/or pattern of physical activity compared to healthy individuals? A systematic review of the literature
Physiotherapy
(2012) - et al.
The role of avoidance, pacing, and other activity patterns in chronic pain
Pain
(2007) The Delphi technique: a comparison of results obtained using two expert panels
Int J Nurs Stud
(1993)- et al.
Reporting outcomes of back pain trials: a modified Delphi study
Eur J Pain
(2011) - et al.
Pain physiology education improves pain beliefs in patients with chronic fatigue syndrome compared with pacing and self-management education: a double-blind randomized controlled trial
Arch Phys Med Rehabil
(2010) - et al.
Using consensus methods in developing clinical guidelines for exercise in managing persistent low back pain
Physiotherapy
(2009)
Frequent attenders with medically unexplained symptoms: service use and costs in secondary care
Br J Psychiatry
Feeling bad in more ways than one: comorbidity patterns of medically unexplained and psychiatric conditions
J Gen Intern Med
Tailored cognitive-behavioral therapy and exercise training for high-risk patients with fibromyalgia
Arthritis Care Res
Cognitive behavior therapy, exercise, or both for treating chronic widespread pain
Arch Intern Med
Chronic fatigue syndrome: an approach combining self-management with graded exercise to avoid exacerbations
J Rehabil Med
Activity pacing in chronic pain management: one aim, but which method? Part one: Introduction and literature review
Br J Occup Ther
Cited by (23)
Defining Activity Pacing: Is It Time to Jump Off the Merry-Go-Round?
2016, Journal of PainResponse to Andrews and Deen on Defining Activity Pacing
2016, Journal of PainExploring patients’ opinions of activity pacing and a new activity pacing questionnaire for chronic pain and/or fatigue: A qualitative study
2016, Physiotherapy (United Kingdom)Citation Excerpt :Semi-structured telephone interviews were used to explore patients’ opinions on pacing and the acceptability of the pacing scales (see Fig. 2). The APQ [24] contained 38 items involving facets such as splitting up tasks, setting goals and gradually increasing activities. Items are rated on a five-point Likert scale (0 = ‘never did this’, 1 = ‘rarely did this’, 2 = ‘occasionally did this’, 3 = ‘frequently did this’ and 4 = ‘always did this’).
An expert-based decision making tool for enhancing the consensus on Caspian Sea legal regime
2016, Journal of Eurasian StudiesCitation Excerpt :The third round repeats the procedure on the second round, but it also presents the panelists the statistical summaries of the second round together with any comments. Participants are usually eager to reconsider their initial answers, which are breakthrough in achieving a consensus (Antcliff et al., 2013). This group opinion may reflect agreement, disagreement or some of each.