Consensus on pre-operative total knee replacement education and prehabilitation recommendations: a UK-based modified Delphi study.

BACKGROUND: Over 90,000 total knee replacement (TKR) procedures are performed annually in the United Kingdom (UK). Patients awaiting TKR face long delays whilst enduring severe pain and functional limitations. Almost 20% of patients who undergo TKR are not satisfied post-operatively. Optimising pre-operative TKR education and prehabilitation could help improve patient outcomes pre- and post-operatively; however, current pre-operative TKR care varies widely. Definitive evidence on the optimal content and delivery of pre-operative TKR care is lacking. This study aimed to develop evidence- and consensus-based recommendations on pre-operative TKR education and prehabilitation. METHODS: A UK-based, three-round, online modified Delphi study was conducted with a 60-member expert panel. All panellists had experience of TKR services as patients (n = 30) or professionals (n = 30). Round 1 included initial recommendations developed from a mixed methods rapid review. Panellists rated the importance of each item on a five-point Likert scale. Panellists could also suggest additional items in Round 1. Rounds 2 and 3 included all items from Round 1, new items suggested in Round 1 and charts summarising panellists' importance ratings from the preceding round. Free-text responses were analysed using content analysis. Quantitative data were analysed descriptively. All items rated as 'Important' or 'Very important' by at least 70% of all respondents in Round 3 were included in the final set of recommendations. RESULTS: Fifty-five panellists (92%) (patients n = 26; professionals n = 29) completed Round 3. Eighty-six recommendation items were included in Round 1. Fifteen new items were added in Round 2. Rounds 2 and 3 therefore included 101 items. Seventy-seven of these reached consensus in Round 3. Six items reached consensus amongst patient or professional panellists only in Round 3. The final set of recommendations comprises 34 education topics, 18 education delivery approaches, 10 exercise types, 13 exercise delivery approaches and two other treatments. CONCLUSIONS: This modified Delphi study developed a comprehensive set of recommendations that represent a useful resource for guiding decision-making on the content and delivery of pre-operative TKR education and prehabilitation. The recommendations will need to be interpreted and reviewed periodically in light of emerging evidence.

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.

Prediction Models to Estimate the Future Risk of Osteoarthritis in the General Population: A Systematic Review.

OBJECTIVE: To evaluate the performance and applicability of multivariable prediction models for osteoarthritis (OA). METHODS: This was a systematic review and narrative synthesis using 3 databases (EMBASE, PubMed, and Web of Science) from inception to December 2021. We included general population longitudinal studies reporting derivation, comparison, or validation of multivariable models to predict individual risk of OA incidence, defined by recognized clinical or imaging criteria. We excluded studies reporting prevalent OA and joint arthroplasty outcome. Paired reviewers independently performed article selection, data extraction, and risk-of-bias assessment. Model performance, calibration, and retained predictors were summarized. RESULTS: A total of 26 studies were included, reporting 31 final multivariable prediction models for incident knee (23), hip (4), hand (3) and any-site OA (1), with a median of 121.5 (range 27-12,803) outcome events, a median prediction horizon of 8 years (range 2-41), and a median of 6 predictors (range 3-24). Age, body mass index, previous injury, and occupational exposures were among the most commonly included predictors. Model discrimination after validation was generally acceptable to excellent (area under the curve = 0.70-0.85). Either internal or external validation processes were used in most models, although the risk of bias was often judged to be high with limited applicability to mass application in diverse populations. CONCLUSION: Despite growing interest in multivariable prediction models for incident OA, focus remains predominantly on the knee, with reliance on data from a small pool of appropriate cohort data sets, and concerns over general population applicability.

Developing the evidence and associated service models to support older adults living with frailty to manage their pain and to reduce its impact on their lives: protocol for a mixed-method, co-design study (The POPPY Study).

INTRODUCTION: The Pain in Older People with Frailty Study is a mixed-method, co-design study, which aims to develop the content, implementation strategies, service and professional guidance to support older adults with frailty to manage their pain. METHODS AND ANALYSIS: The study has four phases: Phase 1, research evidence and information synthesis from randomised controlled trials of multicomponent pain management programmes and psychological therapies for community-dwelling older adults. Phase 2, qualitative interviews with 30 community-dwelling older adults (≥75 years) living with frailty and persistent pain, including dyadic interviews with a spouse or unpaid carer. Phase 3, qualitative interviews with healthcare professionals (HCPs) working within various pain service types; 5-8 HCPs per service and up to 12 services including primary care, secondary care, tertiary centres and services with voluntary sector input. Phase 4, co-design workshops with older adults, HCPs and commissioners. Inclusion criteria (Phase 2): community-dwelling older adults (≥75 years) living with frailty and persistent pain. Exclusion criteria (Phase 2): care home residents, a dementia or cancer diagnosis. Cancer survivors, ≥5 years cancer free, and not undergoing active cancer treatment can participate. Analysis for Phase 1 will use narrative synthesis, Phase 2 will use grounded theory analysis and Phase 3 will use thematic analysis. Oversight is provided from a patient and public involvement group and an independent steering committee. ETHICS AND DISSEMINATION: The protocol was approved by Leeds-East Research Ethics Committee on 28 April 2022 (22/YH/0080). Consent is sought if an individual is willing to participate (Phases 2-4) and has capacity. Findings will be disseminated at conferences, in newsletters and journals and to local authorities and charities.

The role of self-efficacy and catastrophizing in explaining improvements in disability, pain and fatigue among patients with chronic widespread pain treated with physiotherapy: an exploratory analysis.

OBJECTIVES: Most research exploring the relationship between cognitive factors (catastrophizing and self-efficacy beliefs) and levels of pain, disability and fatigue in patients with chronic widespread pain has been performed in multidisciplinary environments. It is less clear whether these associations are valid in other clinical environments. This study therefore aimed to establish whether changes in cognitive factors were related to changes in pain, disability and fatigue among patients treated in a physiotherapy-led symptom management programme. DESIGN: A longitudinal pre-post treatment study. Regression analyses were performed with change in pain, disability, physical and mental fatigue as the dependent measures. Demographics, change in pain and fatigue (when not dependent variables) and cognitive factors were entered as independent variables. ß values were calculated for the final model. SETTING: Two out-patient physiotherapy departments in Manchester, UK. PARTICIPANTS: Fifty patients with persistent widespread pain. INTERVENTION: A physiotherapist-led symptom management programme. MAIN OUTCOME MEASURES: Disability (Fibromyalgia Impact Questionnaire), Pain (Numeric Pain Rating Scale and Fatigue (Chalder Fatigue Scale) RESULTS: Significant changes in disability, fatigue and cognitive factors were observed after treatment. Changes in self-efficacy beliefs (ß=-0.38, P<0.05) and catastrophizing (ß=0.41, P<0.05) were significantly related to reductions in disability. There was no significant relationship between change in the cognitive variables and change in pain or fatigue. CONCLUSIONS: Self-efficacy beliefs and catastrophizing were important determinants of change in disability, but not pain or fatigue among patients with chronic widespread pain attending physiotherapy. Cognitively-informed physiotherapy appeared to be effective in reducing disability and fatigue and modifying cognitive factors. Such interventions may offer an effective treatment option for patients with chronic widespread pain and future randomised controlled trials are required to fully assess this.

"Pacing does help you get your life back": The acceptability of a newly developed activity pacing framework for chronic pain/fatigue.

OBJECTIVES: We have developed and feasibility tested an activity pacing framework for clinicians to standardise their recommendations of activity pacing to patients with chronic pain/fatigue. This study aimed to explore the acceptability and fidelity to this framework in preparation for a future trial of activity pacing. DESIGN: Acceptability and fidelity were explored using semi-structured interviews. Data were analysed using framework analysis. PARTICIPANTS: Patients who attended a rehabilitation programme for chronic pain/fatigue underpinned by the framework, and clinicians (physiotherapists and psychological wellbeing practitioners) who led the programmes. RESULTS: Seventeen interviews were conducted, involving 12 patients with chronic pain/fatigue and five clinicians. The framework analysis revealed four deductive themes: (1) Acceptability of the activity pacing framework, (2) Acceptability of the feasibility study methods, (3) Processes of change and (4) Barriers and facilitators to activity pacing; and one inductive theme: (5) Perspectives of patients and clinicians. CONCLUSIONS: The activity pacing framework appeared acceptable to patients and clinicians, and adherence to the framework was demonstrated. Processes of behaviour change included patients' regulation of activities through activity pacing. Barriers to pacing included work/social commitments and facilitators included identifying the benefits of pacing on symptoms. Different perspectives emerged between clinicians and patients regarding interpretations of symptom-contingent and quota-contingent strategies. The framework recognises fluctuations in symptoms of chronic pain/fatigue and encourages a quota-contingent approach with flexibility. Future work will develop a patient friendly guide ahead of a clinical trial to explore the effects of pacing.

"I could have a proper ankle" - a qualitative study of patients' perceptions of total ankle replacement and ankle fusion surgery.

BACKGROUND: End-stage ankle osteoarthritis typically causes severe pain and impaired function. Surgical treatment involves total ankle replacement (TAR) or ankle fusion. Definitive evidence about which procedure is optimal is lacking. No previous studies have thoroughly explored patients' experiences across the entire TAR/ankle fusion pathway. This study aimed to address this gap by exploring perceptions of surgery, education, rehabilitation and outcomes among patients who had undergone TAR or ankle fusion. METHODS: Seven participants were purposively selected from an orthopaedic centre in northern England (3 females, 4 males). Participants had undergone primary TAR without revision (n = 2), TAR requiring revision (n = 3) or ankle fusion (n = 2). Each participant completed a single semi-structured interview. Interviews were digitally recorded, transcribed verbatim and analysed thematically. RESULTS: Three themes, each with two subthemes, were identified: decision-making (seeking help; surgical options), perceptions of support (information/education; clinical support) and impact on the individual (personal circumstances and beliefs; post-operative outcomes). Pain affecting participants' valued activities was key to their decision to seek help. Participants' decision between TAR and ankle fusion was influenced by multiple factors. Concerns regarding the lack of joint flexibility following fusion were highlighted, with some participants perceiving TAR as a "proper ankle" that would enable them to avoid limping. Participants obtained information from various sources, with most feeling that the education from their care team was inadequate. Participants' individual circumstances and beliefs influenced their decision-making and perceptions of their post-operative outcomes. Finally, whilst most participants were pleased with their outcomes, some experienced substantial ongoing problems such as difficulty walking and chronic pain. CONCLUSIONS: This study demonstrates the importance of providing adequate education about TAR and ankle fusion to enable patients to make informed decisions. Most participants felt that the education and clinical support they received did not fully meet their needs. Participants' personal circumstances and beliefs had a strong influence on their decision-making and perceptions of their post-operative outcomes, highlighting the need to personally tailor education and clinical support. Future work with a larger sample of patients and other key stakeholders is required to develop consensus-based guidelines on pre- and post-operative support for patients undergoing TAR/ankle fusion.

Content and delivery of pre-operative interventions for patients undergoing total knee replacement: a rapid review.

BACKGROUND: Total knee replacement (TKR) is a common operation typically performed for end-stage knee osteoarthritis. Patients awaiting TKR often have poor health-related quality of life. Approximately 20% of patients experience persistent pain post-TKR. Pre-operative TKR interventions could improve pre- and post-operative outcomes, but future research is required to inform their design. This review aimed to identify and synthesize recent literature on the content and delivery of pre-operative TKR interventions to help guide future research and clinical practice. METHODS: This rapid review included randomized trials of pre-operative TKR interventions ("outcomes studies") and primary studies exploring patients' and/or health professionals' views of pre-operative TKR interventions ("views studies"). Medline, Embase, PsycINFO, CINAHL and the Cochrane Central Register of Controlled Trials were searched for English language studies published between January 2009 and December 2020. Eligible studies' reference lists were screened. Studies were appraised using the Mixed Methods Appraisal Tool. The findings were narratively synthesized using a convergent segregated approach. RESULTS: From 3263 records identified, 52 studies were included (29 outcomes studies, 21 views studies, two outcomes/views studies). The studies' methodological quality varied but was generally highest in qualitative studies. The outcomes studies investigated education (n=5), exercise (n=20), psychological (n=2), lifestyle (n=1), and/or other interventions (n=5). The views studies addressed education (n=20), exercise (n=3), psychological (n=1), lifestyle (n=4), and/or other interventions (n=1). Only three outcomes studies (two randomized controlled trials (RCTs) and a pilot study) compared the effectiveness of intervention components/delivery approaches. The two RCTs' results suggest that pre-operative TKR exercise interventions are equally effective regardless of whether they include strength or strength plus balance training and whether they are hospital- or home-based. Personal tailoring and using more than one delivery format were associated with improved outcomes and/or perceived as beneficial for multiple intervention types. CONCLUSIONS: Definitive evidence on the optimal design of pre-operative TKR interventions is lacking. Personal tailoring and employing multiple delivery formats appear to be valuable design elements. Preliminary evidence suggests that including balance training and hospital versus home delivery may not be critical design elements for pre-operative TKR exercise interventions. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42019143248 FUNDER: National Institute for Health and Care Research (ICA-CDRF-2018-04-ST2-006).

Understanding peer mentorship in supporting self-management of hip and knee osteoarthritis: A qualitative study of mentees' perspectives.

BACKGROUND: Hip and knee osteoarthritis (OA) are common musculoskeletal conditions. Treatment is usually conservative, making self-management a priority. We developed and trialled an OA peer mentorship intervention to support self-management in older people. Our objectives were to gain understanding of the perceived challenges of living with OA and explore how a peer mentorship intervention can support tackling these challenges; and to explore mentees' experiences of receiving the intervention to understand how this affected their OA self-management. METHODS: Qualitative semi-structured interviews focussing on acceptability and feasibility of being in the study were conducted with mentees. Transcribed interviews were double coded and subject to framework analysis. To address the objectives of this paper, three main themes were subject to focused analysis: mentees' experiences of OA, experience of peer mentorship support and factors influencing self-management. RESULTS: Seventeen mentees participated in an interview following completion of the peer support intervention. Themes emerging from focused analysis were the following: tackling the challenges of living with OA pre- and post-intervention; and the interplay of the peer mentorship intervention and self-management. Key elements of the latter theme are enabling factors provided by peer mentorship, and mentees' readiness to self-manage. CONCLUSION: To effectively support OA self-management, peer mentorship interventions should include core educational components and focus on strategies that enhance key enablers of self-management. Paying attention to the mentor-mentee relationship and timing of intervention engagement can maximise opportunities for older people to adjust and transition from supported to independent self-management.

Exploring the feasibility, acceptability and value of volunteer peer mentors in supporting self-management of osteoarthritis: a qualitative evaluation.

BACKGROUND: Hip and knee osteoarthritis (OA) affect a large and growing proportion of the population. Treatment options are typically conservative making self-management a priority. Using trained peers to support individuals with OA has potential to improve self-management. PURPOSE: To explore the process of engaging and training volunteers to become peer mentors; and to qualitatively evaluate the feasibility, acceptability and value of being a peer mentor to support others' self-management of OA. MATERIALS AND METHODS: A qualitative evaluation of a peer mentorship support intervention reporting the processes of recruitment and training; and semi-structured interviews conducted with nine active peer mentors. Transcribed interviews were coded and analysed using framework analysis. RESULTS: It was possible to recruit, train and retain volunteers with OA to become peer mentors. The peer mentors benefitted from their training and felt equipped to deliver the intervention. They enjoyed social elements of the mentorship intervention and gained satisfaction through delivering valued support to mentees. Peer mentors perceived the mentorship intervention to have a positive impact on self-management of OA for mentees. CONCLUSION: Training volunteers with OA to become peer mentors was feasible and acceptable. Peer mentors perceived their support benefitted others with OA. They positively rated their experience of providing mentorship support.IMPLICATIONS FOR REHABILITATIONThis study demonstrates that it is possible to recruit, train and engage older volunteers to become peer mentors for people with osteoarthritis.Training should highlight the significance of employing key self-management techniques such as goal-setting.Peer mentors acknowledged that they benefitted from training and delivering the mentorship intervention, and this impacted positively on their own osteoarthritis self-management.Careful consideration of matching mentors and mentees appears to enhance the success of mentorship support.Recognising the impact of mentorship support on mentees' self-management is central to peer mentors' sustained engagement with the intervention.

Testing a newly developed activity pacing framework for chronic pain/fatigue: a feasibility study.

OBJECTIVES: To test the feasibility of using a new activity pacing framework to standardise healthcare professionals' instructions of pacing, and explore whether measures of activity pacing/symptoms detected changes following treatment. DESIGN: Single-arm, repeated measures study. SETTING: One National Health Service (NHS) Pain Service in Northern England, UK. PARTICIPANTS: Adult patients with chronic pain/fatigue, including chronic low back pain, chronic widespread pain, fibromyalgia and chronic fatigue syndrome/myalgic encephalomyelitis. INTERVENTIONS: Six-week rehabilitation programme, standardised using the activity pacing framework. OUTCOME MEASURES: Feasibility was explored via patients' recruitment/attrition rates, adherence and satisfaction, and healthcare professionals' fidelity. Questionnaire data were collected from patients at the start and end of the programme (T1 and T2, respectively) and 3 months' follow-up (T3). Questionnaires included measures of activity pacing, current/usual pain, physical/mental fatigue, depression, anxiety, self-efficacy, avoidance, physical/mental function and quality of life. Mean changes in activity pacing and symptoms between T1-T2, T2-T3 and T1-T3 were estimated. RESULTS: Of the 139 eligible patients, 107 patients consented (recruitment rate=77%); 65 patients completed T2 (T1-T2 attrition rate=39%), and 52 patients completed T3 (T1-T3 attrition rate=51%). At T2, patients' satisfaction ratings averaged 9/10, and 89% attended ≥5 rehabilitation programme sessions. Activity pacing and all symptoms improved between T1 and T2, with smaller improvements maintained at T3. CONCLUSION: The activity pacing framework was feasible to implement and patients' ability to pace and manage their symptoms improved. Future work will employ a suitable comparison group and test the framework across wider settings to explore the effects of activity pacing in a randomised controlled trial. TRIAL REGISTRATION NUMBER: NCT03497585.

Peer mentorship to improve self-management of hip and knee osteoarthritis: a randomised feasibility trial.

OBJECTIVE: To determine the feasibility of conducting a randomised controlled trial (RCT) of a peer mentorship intervention to improve self-management of osteoarthritis (OA). DESIGN: Six-month parallel group non-blinded randomised feasibility trial. SETTING: One secondary care and one primary care UK National Health Service Trust. PARTICIPANTS: Fifty adults aged ≥55 years old with hip and/or knee OA. INTERVENTIONS: Participants were allocated 1:1 to the intervention or control group using an online randomisation service. Intervention group participants received usual care (information resources) and up to eight community-based self-management support sessions delivered by a peer mentor (trained volunteer with hip and/or knee OA). Control group participants received usual care only. OUTCOME MEASURES: Key feasibility outcomes were participant and peer mentor recruitment and attrition, intervention completion and the sample size required for a definitive RCT. Based on these feasibility outcomes, four success criteria for proceeding to a definitive RCT were prespecified. Patient-reported outcomes were collected via questionnaires at baseline, 8 weeks and 6 months. RESULTS: Ninety-six individuals were screened, 65 were eligible and 50 were randomised (25 per group). Of the 24 participants who commenced the intervention, 20 completed it. Four participants did not complete the 6-month questionnaire. Twenty-one individuals were eligible for the peer mentor role, 15 were trained and 5 withdrew prior to being matched with a participant. No intervention-related harms occurred. Allowing for 20% attrition, the sample size required for a definitive RCT was calculated as 170 participants. The intervention group showed improvements in self-management compared with the control group. CONCLUSIONS: The feasibility outcomes achieved the prespecified criteria for proceeding to an RCT. The exploratory analyses suggest peer mentorship may improve OA self-management. An RCT of the OA peer mentorship intervention is therefore warranted with minor modifications to the intervention and trial procedures. TRIAL REGISTRATION NUMBER: ISRCTN:50675542.

Cognitive factors are associated with disability and pain, but not fatigue among physiotherapy attendees with persistent pain and fatigue.

OBJECTIVES: Most research exploring the relationship between cognitive factors and pain, disability and fatigue in patients with persistent pain/fatigue has been performed in multi disciplinary environments. It is unclear whether these associations are consistent in other contexts. This study therefore aimed to establish the relationships between these factors in patients with persistent pain/fatigue referred for physiotherapy treatment. DESIGN: Cross-sectional observational study assessing the association between cognitive factors (self-efficacy and catastrophizing) and levels of pain, disability, mental fatigue and physical fatigue in patients with persistent pain/fatigue disorders. Data were analysed using regression analyses. SETTING: Two out-patient physiotherapy departments, Manchester, UK. PARTICIPANTS: 166 patients with persistent pain and fatigue disorders chronic widespread pain, fibromyalgia and chronic fatigue syndrome/myalgic encephalopathy). MAIN OUTCOME MEASURES: Disability was assessed using the Fibromyalgia Impact Questionnaire, whilst mental and physical fatigue were assessed with the sub-scales of the Chalder Fatigue Scale. Pain intensity was measured with a Numeric Pain Rating Scale, self-efficacy with the Chronic Pain Self-efficacy Questionnaire and catastrophizing with the Pain Catastrophizing Scale. RESULTS: Cognitive factors were significantly associated with pain (self-efficacy beliefs ß=-0.30, P<0.05; catastrophizing ß=0.24, P<0.05) and disability (self-efficacy beliefs ß=-0.62, P<0.05), but not fatigue. CONCLUSIONS: Similar associations were observed in patients referred to physiotherapy as to those observed in patients treated in multi disciplinary clinical environments. Self-efficacy beliefs appear to be particularly strong determinants of disability, but exert a lesser influence over pain or fatigue. Targeting self-efficacy may be an effective method to reduce disability in patients with persistent pain and fatigue disorders.

Survey of activity pacing across healthcare professionals informs a new activity pacing framework for chronic pain/fatigue.

INTRODUCTION: Activity pacing is considered a key component of rehabilitation programmes for chronic pain/fatigue. However, there are no widely used guidelines to standardize how pacing is delivered. This study aimed to undertake the first stage in developing a comprehensive evidence-based activity pacing framework. METHODS: An online survey across pain/fatigue services in English National Health Service trusts explored healthcare professionals' opinions on the types/uses of pacing, aims, facets and perceived effects. Data were analysed using descriptive statistics for closed-ended questions and thematic analysis for open-ended questions. Purposeful recruitment with a snowball effect engaged 92 healthcare professionals (physiotherapists, occupational therapists, nurses, doctors and psychologists) to the study. RESULTS: Pacing was highly utilized, with perceived long-term benefits for patients (n = 83, 90.2% healthcare professionals instructed pacing). The most endorsed aim of pacing was "achievement of meaningful activities" (24.5% of ranked votes). The least endorsed aim was "to conserve energy" (0.1% of ranked votes). The most frequently supported facet of pacing was "breaking down tasks" (n = 91, 98.9%). The least supported facet was "stopping activities when symptoms increase" (n = 6, 6.5%). Thematic analysis showed recurring themes that pacing involved flexibility and sense of choice. CONCLUSIONS: Pacing is a multidimensional coping strategy and complex behaviour. The message is clear that pacing should enable increases in meaningful activities, as opposed to attempting to avoid symptoms. The survey findings have informed the development of an activity pacing framework to guide healthcare professionals on the multiple components of pacing. This will help to standardize and optimize treatments for chronic pain/fatigue and enable future investigations.

Engaging stakeholders to refine an activity pacing framework for chronic pain/fatigue: A nominal group technique.

OBJECTIVES: Due to the current absence of a standardized guide for activity pacing, the concept of pacing is interpreted in various ways by healthcare professionals, patients and researchers. Consequently, the effects of pacing across different conditions are unclear. The present study aimed to undertake the second stage in the development of an activity pacing framework for chronic pain/fatigue. METHODS: The newly developed activity pacing framework was refined using a consensus method. A nominal group technique (NGT) was selected to engage stakeholders to reach agreement on the top 10 priorities for inclusion in the framework and accompanying appendices. Participants included patients with diagnoses of chronic pain/fatigue and healthcare professionals working in fields of chronic pain/fatigue. RESULTS: Ten participants were recruited via purposive sampling: four patients, two physiotherapists, two occupational therapists and two psychological wellbeing practitioners. The top priorities for the pacing framework included a clear definition of pacing, and stating the aims and context of pacing. The appendices were refined as a teaching guide, including priorities of detailing the stages of pacing, the overactivity-underactivity cycle/pain cycle and goal setting. CONCLUSIONS: Incorporating a diverse panel of stakeholders was an effective and inclusive method to refine the activity pacing framework. The framework has been purposefully designed for wider use across patients with chronic pain/fatigue and by various healthcare professionals. The framework provides a comprehensive definition, background and manual for healthcare professionals to instruct activity pacing. Further study will test the clinical usability of the framework, to enable the standardization of activity pacing in future investigations.

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.

Assessing the Psychometric Properties of an Activity Pacing Questionnaire for Chronic Pain and Fatigue.

BACKGROUND: Therapists frequently advise the use of activity pacing as a coping strategy to manage long-term conditions (eg, chronic low back pain, chronic widespread pain, chronic fatigue syndrome/myalgic encephalomyelitis). However, activity pacing has not been clearly operationalized, and there is a paucity of empirical evidence regarding pacing. This paucity of evidence may be partly due to the absence of a widely used pacing scale. To address the limitations of existing pacing scales, the 38-item Activity Pacing Questionnaire (APQ-38) was previously developed using the Delphi technique. OBJECTIVE: The aims of this study were: (1) to explore the psychometric properties of the APQ-38, (2) to identify underlying pacing themes, and (3) to assess the reliability and validity of the scale. DESIGN: This was a cross-sectional questionnaire study. METHODS: Three hundred eleven adult patients with chronic pain or fatigue participated, of whom 69 completed the test-retest analysis. Data obtained for the APQ-38 were analyzed using exploratory factor analysis, internal and test-retest reliability, and validity against 2 existing pacing subscales and validated measures of pain, fatigue, anxiety, depression, avoidance, and mental and physical function. RESULTS: Following factor analysis, 12 items were removed from the APQ-38, and 5 themes of pacing were identified in the resulting 26-item Activity Pacing Questionnaire (APQ-26): activity adjustment, activity consistency, activity progression, activity planning, and activity acceptance. These themes demonstrated satisfactory internal consistency (Cronbach α=.72-.92), test-retest reliability (intraclass correlation coefficient=.50-.78, P≤.001), and construct validity. Activity adjustment, activity progression, and activity acceptance correlated with worsened symptoms; activity consistency correlated with improved symptoms; and activity planning correlated with both improved and worsened symptoms. LIMITATIONS: Data were collected from self-report questionnaires only. CONCLUSIONS: Developed to be widely used across a heterogeneous group of patients with chronic pain or fatigue, the APQ-26 is multifaceted and demonstrates reliability and validity. Further study will explore the effects of pacing on patients' symptoms to guide therapists toward advising pacing themes with empirical benefits.

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

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.