How well can we measure chronic pain impact in existing longitudinal cohort studies? Lessons learned.

Multiple large longitudinal cohorts provide opportunities to address questions about predictors of pain and pain trajectories, even when not anticipated in design of the historical databases. This focus article uses two empirical examples to illustrate the processes of assessing the measurement properties of data from large cohort studies to answer questions about pain. In both examples, data were screened to select candidate variables that captured the impact of chronic pain on self-care activities, productivity and social activities. We describe a series of steps to select candidate items and evaluate their psychometric characteristics in relation to the measurement of pain impact proposed. In UK Biobank, a general lack of internal consistency of variables selected prevented the identification of a satisfactory measurement model, with lessons for the measurement of chronic pain impact. In the English Longitudinal Study of Ageing, a measurement model for chronic pain impact was identified, albeit limited to capturing the impact of pain on self-care and productivity but lacking coverage related to social participation. In conjunction with its supplementary material, this focus article aims to encourage exploration of these valuable prospectively collected data; to support researchers to make explicit the relationships between items in the databases and constructs of interest in pain research; and to use empirical methods to estimate the possible biases in these variables. PERSPECTIVE: This focus article outlines a theory-driven approach for fitting new measurement models to data from large cohort studies, and evaluating their psychometric properties. This aims to help researchers develop an empirical understanding of the gains and limitations connected with the process of re-purposing the data stored in these datasets.

Pain and other complications of pelvic mesh: a systematic review of qualitative studies and thematic synthesis of women's accounts.

OBJECTIVES: Synthesis of the experience of women with pain from pelvic or vaginal mesh or its removal, to identify pain-related problems and to formulate psychological aspects of pain. DESIGN: Systematic review and thematic analysis of qualitative studies of pain from pelvic or vaginal mesh, or mesh removal, in women over 18 years, using individual interviews, focus groups, free text, or written or oral contributions to formal enquiries. DATA SOURCES: Medline, Embase and PsycINFO, from inception to 26 April 2023. ELIGIBILITY CRITERIA: Qualitative studies of pain and other symptoms from pelvic or vaginal mesh or its removal; adults; no language restriction. DATA EXTRACTION AND SYNTHESIS: Line-by-line coding of participant quotations and study author statements by one author to provide codes that were applied to half the studies by another author and differences resolved by discussion. Codes were grouped into subthemes and themes by both authors, then scrutinised and discussed by a focus group of mesh-injured women for omissions, emphasis and coherence. Studies were appraised using an amalgamation of the CASP and COREQ tools. RESULTS: 2292 search results produced 9 eligible studies, with 7-752 participants, a total of around 2000. Four recruited patients, four totally or partially from mesh advocacy groups, and two were national enquiries (UK and Australia). Four major themes were as follows: broken body, broken mind; distrust of doctors and the medical industry; broken life and keeping going-a changed future. Psychological content mainly concerned the loss of trust in medical care, leaving women unsupported in facing an uncertain future. Mesh-injured women strongly endorsed the findings. CONCLUSIONS: Pain and other problems associated with pelvic mesh are profound and far-reaching for women affected. Worse, they feel subject to continued gaslighting, including denial of their mesh-related problems and dismissal of their concerns about continued mesh insertion. PROSPERO REGISTRATION NUMBER: CRD42022330527.

Mental health and conflict: a pilot of an online eye movement desensitisation and reprocessing (EMDR) intervention for forcibly displaced Syrian women.

Background: The Syrian conflict has been ongoing since 2011. Practical and scalable solutions are urgently needed to meet an increase in need for specialised psychological support for post-traumatic stress disorder given limited availability of clinicians. Training forcibly displaced Syrians with a mental health background to remotely deliver specialised interventions increases the availability of evidence based psychological support. Little is known about the effectiveness of online therapy for forcibly displaced Syrian women provided by forcibly displaced Syrian women therapists. Purpose: To pilot an evidence-based trauma therapy, Eye Movement Desensitisation and Reprocessing (EMDR), carried out online by trained forcibly displaced Syrian women therapists for forcibly displaced Syrian women who require treatment for post-traumatic stress disorder (PTSD). Methods: 83 forcibly displaced Syrian women, living in Türkiye or inside Syria, with diagnosable PTSD, were offered up to 12 sessions of online EMDR over a period of 3 months. This was delivered by forcibly displaced Syrian women therapists who were trained in EMDR. Data were gathered, using Arabic versions, on PTSD symptoms using the Impact of Events Scale Revised, depression symptoms using the Patient Health Questionnaire-9 and anxiety symptoms using the Generalised Anxiety Disorder Assessment-7 at baseline, mid-point, and end of therapy. Results: PTSD scores, depression scores and anxiety scores all significantly reduced over the course of treatment, with lower scores at midpoint than baseline and lower scores at end of treatment than at midpoint. Only one participant (1%) exceeded the cutoff point for PTSD, and 13 (16%) exceeded the cutoff points for anxiety and depression at the end of treatment. Conclusion: In this pilot study up to 12 sessions of online EMDR were associated with reductions in PTSD, anxiety and depression symptoms in Syrian women affected by the Syrian conflict. The training of forcibly displaced Syrian mental health professionals to deliver online therapy is a relatively low cost, scalable, sustainable solution to ensure that those who are affected by the conflict can access specialised support. Further research is needed using a control group to confirm that the observed effects are due to EMDR treatment, as is research with post-treatment follow-up to ascertain that benefits are maintained.

Making sense of pain in inflammatory bowel disease (IBD): A qualitative study.

OBJECTIVES: Inflammatory bowel disease (IBD) is a chronic, gastrointestinal tract condition, in which pain is one of the most widespread and debilitating symptoms, yet research about how individuals make sense of their IBD pain is lacking. The current study aimed to explore how individuals with IBD understand their pain. METHODS: Twenty participants, recruited via the Crohn's & Colitis UK charity, were interviewed about their understanding of their IBD pain using the Grid Elaboration Method that elicits free associations on which it invites elaboration. Thematic analysis was used to organise transcribed verbatim data. RESULTS: Three related themes - making sense of my pain, navigating my care and support and it takes its toll - comprising seven sub-themes, illustrated the ways in which participants made sense of pain experientially, multi-dimensionally, and in the broader context of IBD and its symptoms. The psychological impact of pain was evident across all interviews. CONCLUSIONS: The findings are consistent with other research in IBD pain, demonstrating the importance of pain in IBD. Sense-making underpins both emotional and practical responses to pain and ideally is constructed as an integral part of clinical care of IBD.

Guarding and flow in the movements of people with chronic pain: A qualitative study of physiotherapists' observations.

BACKGROUND: Among the adaptations of movement consistently associated with disability in chronic pain, guarding is common. Based on previous work, we sought to understand better the constituents of guarding; we also used the concept of flow to explore the description of un/naturalness that emerged from physiotherapists' descriptions of movement in chronic pain. The aim was to inform the design of technical systems to support people with chronic pain in everyday activities. METHODS: Sixteen physiotherapists, experts in chronic pain, were interviewed while repeatedly watching short video clips of people with chronic low back pain doing simple movements; physiotherapists described the movements, particularly in relation to guarding and flow. The transcribed interviews were analysed thematically to elaborate these constructs. RESULTS: Moderate agreement emerged on the extent of guarding in the videos, with good agreement that guarding conveyed caution about movement, distinct from biomechanical variables of stiffness or slow speed. Physiotherapists' comments on flow showed slightly better agreement, and described the overall movement in terms of restriction (where there was no flow or only some flow), of tempo of the entire movement, and as naturalness (distinguished from normality of movement). CONCLUSIONS: These qualities of movement may be useful in designing technical systems to support self-management of chronic pain. SIGNIFICANCE: Drawing on the descriptions of movements of people with chronic low back pain provided by expert physiotherapists to standard stimuli, two key concepts were elaborated. Guarding was distinguished from stiffness (a physical limitation) or slowness as motivated by fear or worry about movement. Flow served to describe harmonious and continuous movement, even when adapted around restrictions of pain. Movement behaviours associated with pain are better understood in terms of their particular function than aggregated without reference to function.

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.

Investigating the veracity of a sample of divergent published trial data in spinal pain.

ABSTRACT: Evidence-based medicine is replete with studies assessing quality and bias, but few evaluating research integrity or trustworthiness. A recent Cochrane review of psychological interventions for chronic pain identified trials with a shared lead author with highly divergent results. We sought to systematically identify all similar trials from this author to explore their risk of bias, governance procedures, and trustworthiness. We searched OVID MEDLINE, EMBASE, CENTRAL, and PEDro from 2010 to December 22, 2021 for trials. We contacted the authors requesting details of trial registration, ethical approval, protocol, and access to the trial data for verification. We used the Cochrane risk-of-bias tool and the Cochrane Pregnancy and Childbirth group's Trustworthiness Screening Tool to guide systematic exploration of trustworthiness. Ten trials were included: 9 compared cognitive behavioural therapy and physical exercise to usual care, exercise alone, or physiotherapy and 1 compared 2 brief cognitive behavioural therapy programmes. Eight trials reported results divergent from the evidence base. Assessment of risk of bias and participant characteristics identified no substantial concerns. Responses from the lead author did not satisfactorily explain this divergence. Trustworthiness screening identified concerns about research governance, data plausibility at baseline, the results, and apparent data duplication. We discuss the findings within the context of methods for establishing the trustworthiness of research findings generally. Important concerns regarding the trustworthiness of these trials reduce our confidence in them. They should probably not be used to inform the results and conclusions of systematic reviews, in clinical training, policy documents, or any relevant instruction regarding adult chronic pain management.

Sufficient conditions for effective psychological treatment of chronic pain: a qualitative comparative analysis.

ABSTRACT: Chronic pain (CP) is the leading cause of years lived with disability globally. Treatment within Western medicine is often multicomponent; the psychological element of treatment varies, yet the optimal conditions for effective reduction of pain-related outcomes remain unclear. This study used qualitative comparative analysis, a relatively new form of evidence synthesis in the field based on set theory to ascertain configurations of intervention components and processes of psychological treatment of chronic pain in adults that lead to more effective interventions. Data were extracted from 38 studies identified in a concurrent Cochrane review and were then subjected to qualitative comparative analysis. Two analyses were conducted: one to examine what is most effective for reducing disability and one to examine what is most effective for reducing distress. Analysis and comparison of the 10 treatments with best outcomes with the 10 treatments with poorest outcomes showed that interventions using graded exposure, graded exercise or behavioural rehearsal (exposure/activity), and interventions aiming to modify reinforcement contingencies (social/operant) reduced disability levels when either approach was applied but not both. Exposure/activity can improve distress levels when combined with cognitive restructuring, as long as social/operant methods are not included in treatment. Clinical implications of this study suggest that treatment components should not be assumed to be synergistic and provided in a single package.

Exploring how people with chronic pain understand their pain: a qualitative study.

OBJECTIVES: A fundamental principle of pain management is educating patients on their pain using current neuroscience. However, current pain neurophysiology education (PNE) interventions show variable success in improving pain outcomes, and may be difficult to integrate with existing understanding of pain. This study aimed to investigate how people with chronic pain understand their pain, using qualitative exploration of their conceptualisations of pain, and how this understanding accommodated, or resisted, the messages of PNE. METHODS: Twelve UK adults with chronic pain were recruited through advertisements on online pain networks. Semi-structured interviews were conducted remotely, with responses elicited using the Grid Elaboration Method (GEM) and then a PNE article. Participants' grid elaborations and responses to PNE were analysed using thematic analysis (TA). RESULTS: Three main themes were extracted from participants' grid elaborations: communicating pain, explaining pain and living with pain. These themes incorporated varied, inconsistent sub-themes: of pain as simultaneously experiential and conceptual; in the body and in the mind; diagnosable and inexplicable; manageable and insuperable. Generalised, meta-level agreement was identified in participants' PNE responses, but with doubts about its practical value. CONCLUSIONS: This study shows that people understand pain through inconsistent experiential models that may resist attempts at conceptual integration. Participants' elaborations showed diverse and dissonant conceptualisations, with experiential themes of restricted living; assault on the self; pursuit of understanding pain and abandonment of that pursuit. Responses, although unexpectedly compatible with PNE, suggested that PNE was perceived as intellectually engaging but practically inadequate. Experiential disconfirmation may be required for behavioural change inhibited by embedded fears and aversive experiences. ETHICAL COMMITTEE NUMBER: UCL REC# 17833/003.

Exploration of Hospital Inpatients' Use of the Verbal Rating Scale of Pain.

Background: Assessment of pain largely relies on self-report. Hospitals routinely use pain scales, such as the Verbal Rating Scale (VRS), to record patients' pain, but such scales are unidimensional, concatenating pain intensity and other dimensions of pain with significant loss of clinical information. This study explored how inpatients understand and use the VRS in a hospital setting. Methods: Forty five participants were interviewed, with data analysed by thematic analysis, and completed a task concerned with the VRS and communication of other dimensions of pain. Results: Participants anchored their pain experience in the physical properties of pain, its tolerability, and its impact on functioning. Their relationship to analgesic medication, personal coping styles, and experiences of staff all influenced how they used the VRS to communicate their pain. Conclusion: Participants grounded and explained their pain in semantically similar but idiosyncratic ways. The VRS was used to combine pain intensity with multiple other elements of pain and often as a way to request analgesic medication. Pain scores need to be explored and elaborated by patient and staff, content of which will imply access to non-pharmacological resources to manage pain.

Military veterans with and without post-traumatic stress disorder: results from a chronic pain management programme.

BACKGROUND AND AIMS: There is very little published evaluation of the treatment of military veterans with chronic pain, with or without post-traumatic stress disorder. Few clinical services offer integrated treatment for veterans with chronic pain and PTSD. Such veterans experience difficulty in accessing treatment for either condition: services may consider each condition as a contraindication to treatment of the other. Veterans are therefore often passed from one specialist service to another without adequate treatment. The veteran pain management programme (PMP) in the UK was established to meet the needs of veterans suffering from chronic pain with or without PTSD; this is the first evaluation. METHODS: The PMP was advertised online via veteran charities. Veterans self-referred with accompanying information from General Practitioners. Veterans were then invited for an inter-disciplinary assessment and if appropriate invited onto the next PMP. Exclusion criteria included; current severe PTSD, severe depression with active suicidal ideation, moderate to severe personality disorder, or who were unable to self-care in the accommodation available. Treatment was by a team of experienced pain management clinicians: clinical psychologist, physiotherapist, nurse, medical consultant and psychiatrist. The PMP was delivered over 10 days: five residential days then five single days over the subsequent 6 months. The PMP combines cognitive behavioural treatment, which has the strongest evidence base, with more recent developments from mindfulness-based CBT for pain and compassion-focused therapy. Standard pain management strategies were adapted to meet the specific needs of the population, recognising the tendency to use demanding activity to manage post-traumatic stress symptoms. Domains of outcome were pain, mood, function, confidence and changes in medication use. RESULTS: One hundred and sixty four military veterans started treatment in 19 programmes, and 158 completed. Results from those with high and low PTSD were compared; overall improvements in all domains were statistically significant: mood, self-efficacy and confidence, and those with PTSD showed a reduction (4.3/24 points on the IES-6). At the end of the programme the data showed that 17% reduced opioid medication and 25% stopped all opioid use. CONCLUSIONS: Veterans made clinically and statistically significant improvements, including those with co-existing PTSD, who also reduced their symptom level. This serves to demonstrate the feasibility of treating veterans with both chronic pain and PTSD using a PMP model of care. IMPLICATIONS: Military veterans experiencing both chronic pain and PTSD can be treated in a PMP adapted for their specific needs by an experienced clinical team.

Psychological therapies for the management of chronic pain (excluding headache) in adults.

BACKGROUND: Chronic non-cancer pain, a disabling and distressing condition, is common in adults. It is a global public health problem and economic burden on health and social care systems and on people with chronic pain. Psychological treatments aim to reduce pain, disability and distress. This review updates and extends its previous version, published in 2012. OBJECTIVES: To determine the clinical efficacy and safety of psychological interventions for chronic pain in adults (age > 18 years) compared with active controls, or waiting list/treatment as usual (TAU). SEARCH METHODS: We identified randomised controlled trials (RCTs) of psychological therapies by searching CENTRAL, MEDLINE, Embase and PsycINFO to 16 April 2020. We also examined reference lists and trial registries, and searched for studies citing retrieved trials. SELECTION CRITERIA: RCTs of psychological treatments compared with active control or TAU of face-to-face therapies for adults with chronic pain. We excluded studies of headache or malignant disease, and those with fewer than 20 participants in any arm at treatment end. DATA COLLECTION AND ANALYSIS: Two or more authors rated risk of bias, extracted data, and judged quality of evidence (GRADE). We compared cognitive behavioural therapy (CBT), behavioural therapy (BT), and acceptance and commitment therapy (ACT) with active control or TAU at treatment end, and at six month to 12 month follow-up. We did not analyse the few trials of other psychological treatments. We assessed treatment effectiveness for pain intensity, disability, and distress. We extracted data on adverse events (AEs) associated with treatment. MAIN RESULTS: We added 41 studies (6255 participants) to 34 of the previous review's 42 studies, and now have 75 studies in total (9401 participants at treatment end). Most participants had fibromyalgia, chronic low back pain, rheumatoid arthritis, or mixed chronic pain. Most risk of bias domains were at high or unclear risk of bias, with selective reporting and treatment expectations mostly at unclear risk of bias. AEs were inadequately recorded and/or reported across studies. CBT The largest evidence base was for CBT (59 studies). CBT versus active control showed very small benefit at treatment end for pain (standardised mean difference (SMD) -0.09, 95% confidence interval (CI) -0.17 to -0.01; 3235 participants; 23 studies; moderate-quality evidence), disability (SMD -0.12, 95% CI -0.20 to -0.04; 2543 participants; 19 studies; moderate-quality evidence), and distress (SMD -0.09, 95% CI -0.18 to -0.00; 3297 participants; 24 studies; moderate-quality evidence). We found small benefits for CBT over TAU at treatment end for pain (SMD -0.22, 95% CI -0.33 to -0.10; 2572 participants; 29 studies; moderate-quality evidence), disability (SMD -0.32, 95% CI -0.45 to -0.19; 2524 participants; 28 studies; low-quality evidence), and distress (SMD -0.34, 95% CI -0.44 to -0.24; 2559 participants; 27 studies; moderate-quality evidence). Effects were largely maintained at follow-up for CBT versus TAU, but not for CBT versus active control. Evidence quality for CBT outcomes ranged from moderate to low. We rated evidence for AEs as very low quality for both comparisons. BT We analysed eight studies (647 participants). We found no evidence of difference between BT and active control at treatment end (pain SMD -0.67, 95% CI -2.54 to 1.20, very low-quality evidence; disability SMD -0.65, 95% CI -1.85 to 0.54, very low-quality evidence; or distress SMD -0.73, 95% CI -1.47 to 0.01, very low-quality evidence). At follow-up, effects were similar. We found no evidence of difference between BT and TAU (pain SMD -0.08, 95% CI -0.33 to 0.17, low-quality evidence; disability SMD -0.02, 95% CI -0.24 to 0.19, moderate-quality evidence; distress SMD 0.22, 95% CI -0.10 to 0.54, low-quality evidence) at treatment end. At follow-up, we found one to three studies with no evidence of difference between BT and TAU. We rated evidence for all BT versus active control outcomes as very low quality; for BT versus TAU. Evidence quality ranged from moderate to very low. We rated evidence for AEs as very low quality for BT versus active control. No studies of BT versus TAU reported AEs. ACT We analysed five studies (443 participants). There was no evidence of difference between ACT and active control for pain (SMD -0.54, 95% CI -1.20 to 0.11, very low-quality evidence), disability (SMD -1.51, 95% CI -3.05 to 0.03, very low-quality evidence) or distress (SMD -0.61, 95% CI -1.30 to 0.07, very low-quality evidence) at treatment end. At follow-up, there was no evidence of effect for pain or distress (both very low-quality evidence), but two studies showed a large benefit for reducing disability (SMD -2.56, 95% CI -4.22 to -0.89, very low-quality evidence). Two studies compared ACT to TAU at treatment end. Results should be interpreted with caution. We found large benefits of ACT for pain (SMD -0.83, 95% CI -1.57 to -0.09, very low-quality evidence), but none for disability (SMD -1.39, 95% CI -3.20 to 0.41, very low-quality evidence), or distress (SMD -1.16, 95% CI -2.51 to 0.20, very low-quality evidence). Lack of data precluded analysis at follow-up. We rated evidence quality for AEs to be very low. We encourage caution when interpreting very low-quality evidence because the estimates are uncertain and could be easily overturned. AUTHORS' CONCLUSIONS: We found sufficient evidence across a large evidence base (59 studies, over 5000 participants) that CBT has small or very small beneficial effects for reducing pain, disability, and distress in chronic pain, but we found insufficient evidence to assess AEs. Quality of evidence for CBT was mostly moderate, except for disability, which we rated as low quality. Further trials may provide more precise estimates of treatment effects, but to inform improvements, research should explore sources of variation in treatment effects. Evidence from trials of BT and ACT was of moderate to very low quality, so we are very uncertain about benefits or lack of benefits of these treatments for adults with chronic pain; other treatments were not analysed. These conclusions are similar to our 2012 review, apart from the separate analysis of ACT.