Summary of the activity pacing survey findings.pdf

Developing an activity pacing framework for chronic pain/fatigue

Healthcare professionals commonly advise activity pacing as a coping strategy to try to help patients with conditions of chronic pain/fatigue to manage their symptoms. Healthcare professionals were invited to complete an online survey regarding their opinions on activity pacing. East Coast Community Healthcare participated. Most healthcare professionals surveyed instructed pacing as a self-management strategy and included pacing as a component of rehabilitation programmes. Pacing was found to be helpful for many but not all patients. Pacing was considered to be helpful when the aims of pacing were to increase valued activities/function and to help to manage symptoms. Challenges of using pacing guides included the conflicting information provided across different resources, or if guides were inflexible or too formulaic. These findings together with existing research findings were used to develop the first draft of an activity pacing framework.

A summary of the survey findings can be viewed on the left.

The Polymyalgia Rheumatica (PMR) Study

Researchers have been looking into epidemiology of PMR in a cohort of primary care patients across UK (including Norfolk and Suffolk practices) in the last 6 years and have published 3 papers to date:

Association between characteristics of pain and stiffness and the functional status of patients with incident polymyalgia rheumatca from primary care. The paper examines the relationship between different characteristics of pain and stiffness and the functional status of patients with newly diagnosed polymyalgia rheumatica (PMR). Patients aged ≥18 years, with a new diagnosis of PMR were recruited from 382 English general practices. Participants were mailed a baseline questionnaire, including separate pain and stiffness manikins and numerical rating scales (NRS), a question on their ability to raise their arms above their head and the modified Health Assessment Questionnaire (mHAQ) to examine participants' functional status. The majority of newly diagnosed PMR patients reported no or minimal functional difficulty. However, those who experience severe or widespread pain or stiffness often have significant functional limitation in performing their daily activities and may be a subset worthy of additional focus in primary care. Full access to publication in Clinical Rheumatology.

Patients' views on the causes of their polymyalgia rheumatica: a content analysis of data from the PMR Cohort Study. This is the first study to examine causation beliefs in PMR, identifying a number of possible causes such as ageing, stress and as a complication of other medical problems. Understanding these patient beliefs may impact on treatment adherence and patient outcome. You can access the article through BMJ Open.

Characterising those with incident polymyalgia rheumatica in primary care: results from the PMR Cohort Study. The paper describes the sociodemographic, general health and polymyalgia rheumatica (PMR)-specific features of participants in a large inception cohort of patients with PMR diagnosed in UK primary care. 654 newly diagnosed participants completed a questionnaire. This first primary care cohort of patients with incident PMR was similar in demographic terms to cohorts recruited in secondary care. However, the extent of symptoms, particularly reported stiffness, is higher than has been described previously. Given the majority of patients with PMR are exclusively managed in primary care, this cohort provides important information on the course of PMR in the community that will help clinicians managing this painful and disabling condition. The full paper published in Arthritis Research & Therapy can be accessed here.