developing an activity pacing framework: feasibility and acceptability

Conditions: Chronic Pain; Fibromyalgia; Chronic Fatigue Syndrome; Chronic Low Back Pain

Summary: this study explores whether it is feasible to use a newly developed activity pacing framework to standardise how activity pacing is instructed by healthcare professionals in rehabilitation programmes for patients with chronic pain/fatigue.

activity pacing is frequently advised in the management of chronic pain/fatigue, including chronic low back pain, chronic widespread pain/fibromyalgia and chronic fatigue syndrome/myalgic encephalomyelitis. however, there is no agreed definition of 'activity pacing' and it is instructed in various ways. for some, pacing involves adapting/limiting activities (for example, breaking down tasks/having rests); while for others, pacing involves having consistent activities/gradually increasing activities. furthermore, pacing has been associated with both improved symptoms (decreased fatigue/anxiety/depression) and worsened symptoms (increased pain/disability). due to the high prevalence and cost (personal and financial) of chronic pain/fatigue, it is imperative that coping strategies such as pacing are clearly defined and evidence-based. this study involves stage iii in the development of an activity pacing framework to standardise how pacing is instructed by healthcare professionals. stage i: online survey of pacing involved 92 healthcare professionals (doctors/nurses/physiotherapists/occupational therapists/clinical psychologists). the survey findings, together with existing research were used to develop the pacing framework. the framework was further developed in stage ii: nominal group technique (consensus meeting), involving four patients and six healthcare professionals. stage iii will test the feasibility of implementing the pacing framework clinically, by using it to underpin existing rehabilitation programmes for chronic pain/fatigue. patients will attend rehabilitation programmes at the study sites as per usual practice. patients' participation in this study involves their completion of a booklet of questionnaires. the aim of this feasibility study is to explore whether the activity pacing framework is usable in the clinical setting, to explore recruitment/retention rates, together with changes in symptoms between the start and end of treatment, and at 3-months follow-up. stage iii will also explore the acceptability of the framework by undertaking interviews with the patients and healthcare professionals involved in the rehabilitation programmes. stage iii is expected to last 22 months. future study will test the framework in a clinical trial to assess the effects of pacing on patients' symptoms. the pacing framework has the potential to improve treatments by providing guidance on the components of pacing found to have benefits for patients. this study is funded by a health education england/national institute for health research (hee/nihr) integrated clinical academic (ica) clinical lectureship.

Eligibility criteria:
feasibility study inclusion criteria: * patients with an initial general practitioner (gp)/hospital consultant referral to the pennine acute hospitals nhs trust with diagnoses of chronic low back pain, chronic widespread pain, fibromyalgia or cfs/me, with a minimum symptom duration of 3 months. * patients referred to a rehabilitation programme for chronic pain/fatigue * patients aged ≥18 years * patients able to read/write in english exclusion criteria: * patients with evidence of a serious underlying pathology, such as a current diagnosis of cancer * patients with severe mental health/cognitive functioning issues acceptability study (qualitative interviews) inclusion criteria: * patients with an initial gp/hospital consultant referral to the pennine acute hospitals national health service (nhs) trust with diagnoses of chronic low back pain, chronic widespread pain, fibromyalgia or cfs/me, with a minimum symptom duration of 3 months (as per the feasibility study). * patients who attended a minimum of one session of the rehabilitation programme, who consented to the study and completed the first questionnaire booklet. patients do not need to have completed the programme, since the interviews will include patients who both completed and did not complete the programme. * qualified healthcare professionals delivering the rehabilitation programmes who received training in using the activity pacing framework: physiotherapists and psychological wellbeing practitioners employed by the pennine acute hospitals nhs trust and pennine care nhs foundation trust.

Keywords: rehabilitation pain management