Activity pacing is associated with better and worse symptoms for patients with long-term conditions

Background: Activity pacing has been associated with both improved and worsened symptoms, and its role in reducing disability among patients with long-term conditions has been questioned. However, existing studies have measured pacing according to unidimensional subscales, and therefore the empirical evidence for pacing as a multifaceted construct remains unclear. We have developed a 26-item Activity Pacing Questionnaire (APQ-26) for chronic pain/fatigue containing 5 themes of pacing: activity adjustment, activity consistency, activity progression, activity planning, and activity acceptance. Objective: To assess the associations between the 5 APQ-26 pacing themes and symptoms of pain, physical fatigue, depression, avoidance, and physical function. Methods: Cross-sectional questionnaire study design. Data analyzed using multiple regression. Participants: A total of 257 adult patients with diagnoses of chronic low back pain, chronic widespread pain, fibromyalgia, and chronic fatigue syndrome/myalgic encephalomyelitis. Results: Hierarchical multiple regression showed that activity adjustment was significantly associated with increased physical fatigue, depression, and avoidance, but decreased physical function (all Ps≤0.030). Activity consistency was associated with decreased pain, physical fatigue, depression, and avoidance, but increased physical function (all Ps≤0.003). Activity planning was associated with reduced physical fatigue (Ps=0.025) and activity acceptance was associated with increased avoidance (Ps=0.036). Conclusions: Some APQ-26 pacing themes were associated with worse symptoms and others with symptom improvement. Specifically, pacing themes involving adjusting/reducing activities were associated with worse symptoms, whereas pacing themes involving undertaking consistent activities were associated with improved symptoms. Future study will explore the causality of these associations to add clarification regarding the effects of pacing on patients’ symptoms

Exploring patients’ opinions of activity pacing and a new activity pacing questionnaire for chronic pain and/or fatigue:a qualitative study

Objective: Despite the frequent recommendation of activity pacing as a coping strategy for patients with chronic pain and/or fatigue, pacing is interpreted in different ways and there is an absence of a widely accepted pacing scale. We have developed a new Activity Pacing Questionnaire(APQ). The aims of this study were to explore patients’ views and beliefs about the concept of pacing, together with the acceptability of the APQ. Design: Qualitative pragmatic study using semi-structured telephone interviews. Data were analysed using Framework analysis. Participants 16 adult patients attending secondary care physiotherapy out-patient departments were recruited via purposive sampling. Diagnoses included chronic low back pain, chronic widespread pain, fibromyalgia and chronic fatigue syndrome/myalgic encephalomyelitis. Findings: Pacing emerged as a multifaceted concept from participants’ descriptions. The implementation of pacing was influenced by participants’ age, the presence of co-morbidities and participants’ emotions. The APQ was found to be generally acceptable in comparison to two existing pacing subscales. Participants undertook activities using quota/symptom-contingent approaches. Four behavioural typologies emerged: Task avoidance, Task persistence, Task fluctuation (boom-bust) and Task modification (activity pacing). Conclusions: The APQ appears to be easy to complete, and acceptable to patients who are attending physiotherapy for the management of long-term conditions. It emerged that individual patients implemented different pacing facets to varying degrees, and that different behavioural typologies were apparent. The relationships between behavioural typologies and facets of pacing warrant further investigation to facilitate the development of effective tailored pacing interventions

Opt-out consent in children’s emergency medicine research

There is global acceptance that individuals should be allowed to decide whether or not to take part in research studies, and to do so after being informed about the nature of the research and the risk that might attach to participation. The process of providing detailed information before seeking consent (formalised by signatures) in advance of undertaking research procedures may not be possible in some circumstances, and sometimes an amended approach may be adopted. The use of opt-out consent has been recognised as a valid and ethical means of recruiting participants to studies particularly with large samples and where the risk to participants is small. However, it is sometimes misunderstood and can be a problematic factor in being accepted by research ethics committees and governing authorities. This may be due partly to differing expectations of the amount of information and support offered, together with the nature of the process that is adopted to ensure that a decision has been made rather than consent simply being assumed. In accordance with ongoing discussions with young people, and following consultation with parents, an opt-out consent strategy including varied means of providing information was employed in a large study of 44,501 cases of children attending emergency or urgent care departments. The study was conducted over more than 12 months in dissimilar emergency departments and an urgent care unit, and was designed to support better decision-making in paediatric emergency departments about whether children need to be admitted to hospital or can be discharged home safely. Robust analysis of the factors that exerted the greatest impact on predicting the need to admit or the safety of discharging children led to a revised version of a an existing tool. In this article we review approaches to consent in research, the nature and impact of opt-out consent, the factors that made this an effective strategy for this study, but also more recent concerns which may make opt-out consent no longer acceptable. Keywords: Emergency department; Opt-out consent; Children, Ethics, Researc

Receiving Preferred Treatment not Associated with Positive Outcome in a Randomized Trial

Background: In a randomized trial of treatments for chronic widespread pain (CWP), participants were asked their treatment preference just prior to randomisation (baseline). This analysis examined whether treatment preference was associated with baseline factors and whether receiving a preferred treatment affected outcomes. Methods: The MUSICIAN trial was a 2 × 2 randomized trial of cognitive behavioural therapy (CBT) or exercise for people with CWP. Participants were randomly allocated to one of three active treatments [CBT (n = 112), exercise (n = 109), both exercise and CBT (n = 112)] or usual care (n = 109). Before allocation participants were asked, if they had a choice, which active treatment they would choose. A positive outcome was self-reported improvement in health of much or very much better 6, 9 and 30 months after entering the study. Associations between preference and baseline characteristics were examined, including age, gender, chronic pain grade (CPG), passive and active coping, fatigue, psychological distress, sleep problems and kinesiophobia. Differences in gender and CPG between preferences were tested by chi-square tests. For continuous variables, comparison was by analysis of variance and, where a difference was observed, Tukey’s honest significant difference was used to identify which preferences differed and then the standardized mean difference (d) with 95% CIs were calculated. Among those allocated to active treatments, logistic regression was used to calculate odds ratios, adjusted for factors associated with preference, with 95% CIs of positive outcome in those receiving their preferred treatment and not receiving preferred treatment as the referent group. Results: Of 442 participants, 144 (33%) expressed preference for exercise, 20 (5%) for CBT, 199 (45%) for combined exercise and CBT and 79 (18%) expressed no preference. Compared with females, males were more likely to prefer exercise only (44 vs 28%) and less likely to prefer combined treatment (35 vs 50%). Those preferring CBT, compared with those preferring exercise, were higher in passive coping [d = 0.9 (95% CI 0.41, 1.37)], fatigue [0.8 (0.34, 1.31)], psychological distress [0.7 (0.26, 1.21)], sleep problems [0.7 (0.18, 1.12)] and kinesiophobia [0.6 (0.17, 1.12)]. Those preferring CBT also had greater scores on passive coping than those preferring combined treatment [0.6 (95% CI 0.11, 1.03)] or no preference [0.5 (−0.01, 0.98)] and greater kinesiophobia than those with no preference [0.5 (−0.05, 0.95)]. Of participants allocated to CBT, exercise or combined treatment, 7, 39 and 50%, respectively, had a preference for their allocated treatment. There was no clear association between achieving a positive outcome and whether or not someone received their preferred treatment (see Table 1). Conclusion: Exercise and exercise combined with CBT were the most preferred treatments. Participants with specific preferences differed from each other with respect to factors which might influence outcome. However, receiving preferred treatment did not appear to influence treatment response. Disclosure statement: M.B. has received funding for the MUSICIAN Study from Arthritis Research UK. G.J.M. has received funding for the MUSICIAN Study from Arthritis Research UK. All other authors have declared no conflicts of interest

Refining and testing the diagnostic accuracy of an assessment tool (PAT-POPS) to predict admission and discharge of children and young people who attend an emergency department : protocol for an observational study

Background: Increasing attendances by children (aged 0–16 years) to United Kingdom Emergency Departments (EDs) challenges patient safety within the National Health Service (NHS) with health professionals required to make complex judgements on whether children attending urgent and emergency care services can be sent home safely or require admission. Health regulation bodies have recommended that an early identification systems should be developed to recognise children developing critical illnesses. The Pennine Acute Hospitals NHS Trust Paediatric Observation Priority Score (PAT-POPS) was developed as an ED-specific tool for this purpose. This study aims to revise and improve the existing tool and determine its utility in determining safe admission and discharge decision making. Methods/design: An observational study to improve diagnostic accuracy using data from children and young people attending the ED and Urgent Care Centre (UCC) at three hospitals over a 12 month period. The data being collected is part of routine practice; therefore opt-out methods of consent will be used. The reference standard is admission or discharge. A revised PAT-POPs scoring tool will be developed using clinically guided logistic regression models to explore which components best predict hospital admission and safe discharge. Suitable cut-points for safe admission and discharge will be established using sensitivity and specificity as judged by an expert consensus meeting. The diagnostic accuracy of the revised tool will be assessed, and it will be compared to the former version of PAT-POPS using ROC analysis. Discussion: This new predictive tool will aid discharge and admission decision-making in relation to children and young people in hospital urgent and emergency care facilities. Trial registration: NIHR RfPB Grant: PB-PG-0815-20034. ClinicalTrials.gov: 213469. Retrospectively registered on 11 April 2018. Keywords: Paediatric, Emergency department, Diagnostic accuracy, Early identification systems, screening tool, Observational, Early warning score, Early warning system, hospital admission

Activity pacing: moving beyond taking breaks and slowing down

This brief communication responds to the paper by Jeong and Cho (Qual Life Res 26(4):903–911, 2017) that has described activity pacing in limited terms of adjusting activities through going at a slower rate and taking breaks. Activity pacing was reported as not involving goal setting, in comparison to other strategies for long-term conditions such as Acceptance and Commitment Therapy. This brief communication aims to challenge this limited perception of activity pacing in light of numerous studies that recognise pacing to be a more complex strategy. Pacing is considered to be a multifaceted coping strategy, including broad themes of not only adjusting activities, but also planning activities, having consistent activity levels, acceptance of current abilities and gradually increasing activities, and one that includes goal setting as a key facet. It is essential that pacing is both defined and measured as a multifaceted strategy in order to assess the outcomes of pacing, and for meaningful comparisons with other strategies regarding efficacy for the management of long-term conditions

Basic science232. Certolizumab pegol prevents pro-inflammatory alterations in endothelial cell function

Background: Cardiovascular disease is a major comorbidity of rheumatoid arthritis (RA) and a leading cause of death. Chronic systemic inflammation involving tumour necrosis factor alpha (TNF) could contribute to endothelial activation and atherogenesis. A number of anti-TNF therapies are in current use for the treatment of RA, including certolizumab pegol (CZP), (Cimzia ®; UCB, Belgium). Anti-TNF therapy has been associated with reduced clinical cardiovascular disease risk and ameliorated vascular function in RA patients. However, the specific effects of TNF inhibitors on endothelial cell function are largely unknown. Our aim was to investigate the mechanisms underpinning CZP effects on TNF-activated human endothelial cells. Methods: Human aortic endothelial cells (HAoECs) were cultured in vitro and exposed to a) TNF alone, b) TNF plus CZP, or c) neither agent. Microarray analysis was used to examine the transcriptional profile of cells treated for 6 hrs and quantitative polymerase chain reaction (qPCR) analysed gene expression at 1, 3, 6 and 24 hrs. NF-κB localization and IκB degradation were investigated using immunocytochemistry, high content analysis and western blotting. Flow cytometry was conducted to detect microparticle release from HAoECs. Results: Transcriptional profiling revealed that while TNF alone had strong effects on endothelial gene expression, TNF and CZP in combination produced a global gene expression pattern similar to untreated control. The two most highly up-regulated genes in response to TNF treatment were adhesion molecules E-selectin and VCAM-1 (q 0.2 compared to control; p > 0.05 compared to TNF alone). The NF-κB pathway was confirmed as a downstream target of TNF-induced HAoEC activation, via nuclear translocation of NF-κB and degradation of IκB, effects which were abolished by treatment with CZP. In addition, flow cytometry detected an increased production of endothelial microparticles in TNF-activated HAoECs, which was prevented by treatment with CZP. Conclusions: We have found at a cellular level that a clinically available TNF inhibitor, CZP reduces the expression of adhesion molecule expression, and prevents TNF-induced activation of the NF-κB pathway. Furthermore, CZP prevents the production of microparticles by activated endothelial cells. This could be central to the prevention of inflammatory environments underlying these conditions and measurement of microparticles has potential as a novel prognostic marker for future cardiovascular events in this patient group. Disclosure statement: Y.A. received a research grant from UCB. I.B. received a research grant from UCB. S.H. received a research grant from UCB. All other authors have declared no conflicts of interes

Are changes in fear-avoidance beliefs, catastrophizing, and appraisals of control predictive of changes in chronic low back pain and disability?

Interventions for chronic low back pain (CLBP) often attempt to modify patients' levels of catastrophizing, their fear-avoidance beliefs, and their appraisals of control. Presumably, these interventions are based on the notion that changes in these cognitive factors are related to changes in measures of adjustment. The aim of the present study was to explore whether changes on these cognitive factors were related to changes in CLBP and disability. Fifty-four CLBP patients completed a series of self-report measures prior to beginning a cognitive-behavioral based intervention and again upon discharge. Change scores (post-treatment score minus pre-treatment score) were calculated for each of the self-report measures. The study found that changes in the cognitive factors were not significantly associated with changes in pain intensity. In contrast, reductions in fear-avoidance beliefs about work and physical activity, as well as increased perceptions of control over pain were uniquely related to reductions in disability, even after controlling for reductions in pain intensity, age and sex. The final model explained 71% of the variance in reductions in disability

Psychometric properties of the TSK-11: a shortened version of the Tampa scale for kinesiophobia

The Tampa Scale for Kinesiophobia (TSK) is one of the most frequently employed measures for assessing pain-related fear in back pain patients. Despite its widespread use, there is relatively little data to support the psychometric properties of the English version of this scale. This study investigated the psychometric properties of the English version of the TSK in a sample of chronic low back pain patients. Item analysis revealed that four items possessed low item total correlations (4, 8, 12, 16) and four items had response trends that deviated from a pattern of normal distribution (4, 9, 12, 14). Consequently, we tested the psychometric properties of a shorter version of the TSK (TSK-11), having excluded the six psychometrically poor items. The psychometric properties of this measure were compared to those of the original TSK. Both measures demonstrated good internal consistency (TSK: α=0.76; TSK-11: α=0.79), test–retest reliability (TSK: ICC=0.82, SEM=3.16; TSK-11: ICC=0.81, SEM=2.54), responsiveness (TSK: SRM=−1.19; TSK-11: SRM=−1.11), concurrent validity and predictive validity. In respect of specific cut-off scores, a reduction of at least four points on both measures maximised the likelihood of correctly identifying an important reduction in fear of movement. Overall, the TSK-11 possessed similar psychometric properties to the original TSK and offered the advantage of brevity. Further research is warranted to investigate the utility of the new instrument and the cut-off scores in a wider group of chronic pain patients in different clinical settings