Elsevier

Physiotherapy

Volume 99, Issue 3, September 2013, Pages 241-246
Physiotherapy

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

https://doi.org/10.1016/j.physio.2012.12.003Get rights and content

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.

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

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