The Development of an Activity Pacing Questionnaire for Chronic Pain and/or Fatigue

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Abstract

Introduction: Activity pacing is often advised as a coping strategy for managing 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 regarding the efficacy of this strategy. Pacing has not been clearly operationalised, and existing descriptions are diverse and include strategies that encourage both increasing and decreasing activities. Moreover, there are few validated scales to measure activity pacing.Aim: To develop an activity pacing questionnaire (APQ) for adult patients with chronic pain and/or fatigue, and to determine its psychometric properties and acceptability.Methods: The study had a three stage mixed method design. Stage I, the Delphi technique involved a three-round consensus method to develop the initial items of the APQ using an expert panel of patients and clinicians. Stage II, the psychometric study, implemented a cross-sectional questionnaire design study, involving a large sample of patients with chronic conditions. This stage assessed the underlying pacing themes of the APQ using factor analysis, internal and test-retest reliability using Cronbach’s alpha and intraclass correlations (ICCs); and validity using correlations with validated measures of pain, fatigue, anxiety, depression, avoidance, and mental and physical function. Stage III, the acceptability study, explored patients’ opinions of the APQ, together with the concept of activity pacing via telephone interviews. The qualitative interview data were analysed using framework analysis.Results: Forty-two participants completed Stage I, the Delphi technique (4 patients, 3 nurses, 26 physiotherapists and 9 occupational therapists). The resulting APQ contained 38 questions involving a number of different facets, including breaking down tasks, gradually increasing activities and setting goals. Stage II, the psychometric study, was completed by 311 patients, of whom 69 were involved in a test-retest analysis. Following factor analysis, eight items were removed from the APQ. Five themes of pacing were identified in the 30-item APQ: Activity limitation, Activity planning, Activity progression, Activity consistency and Activity acceptance. These demonstrated satisfactory internal consistency, test-retest reliability, and construct validity against validated measures. Activity limitation, Activity planning, Activity progression and Activity acceptance correlated with worse symptoms, and Activity consistency correlated with improved symptoms. Sixteen patients participated in Stage III, the acceptability interviews. The APQ was found to be generally acceptable. Four activity behaviour typologies emerged through the interviews: Task avoidance, Task persistence, Task fluctuation (boom-bust) and Task modification (activity pacing).Conclusion: This is the first known study that has engaged both patients and clinicians in the development of an activity pacing questionnaire. Developed to be widely used across a heterogeneous group of patients with chronic pain and/or fatigue, the APQ is multifaceted, comprehensive and contains more themes of pacing than existing pacing subscales.

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The appendices are included in the attached file named 'Thesis_Deborah.Antcliff 15.05.14'. However, they will be presented as a CD-ROM in the printed hardbound version of the thesis due to the large volume of tables/questionnaires/letters.

Keyword(s)

Activity pacing; Chronic fatigue; Chronic pain; Questionnaire

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