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.

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.

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.

Sensing behavior change in chronic pain: a scoping review of sensor technology for use in daily life.

ABSTRACT: Technology offers possibilities for quantification of behaviors and physiological changes of relevance to chronic pain, using wearable sensors and devices suitable for data collection in daily life contexts. We conducted a scoping review of wearable and passive sensor technologies that sample data of psychological interest in chronic pain, including in social situations. Sixty articles met our criteria from the 2783 citations retrieved from searching. Three-quarters of recruited people were with chronic pain, mostly musculoskeletal, and the remainder with acute or episodic pain; those with chronic pain had a mean age of 43 (few studies sampled adolescents or children) and 60% were women. Thirty-seven studies were performed in laboratory or clinical settings and the remainder in daily life settings. Most used only 1 type of technology, with 76 sensor types overall. The commonest was accelerometry (mainly used in daily life contexts), followed by motion capture (mainly in laboratory settings), with a smaller number collecting autonomic activity, vocal signals, or brain activity. Subjective self-report provided "ground truth" for pain, mood, and other variables, but often at a different timescale from the automatically collected data, and many studies reported weak relationships between technological data and relevant psychological constructs, for instance, between fear of movement and muscle activity. There was relatively little discussion of practical issues: frequency of sampling, missing data for human or technological reasons, and the users' experience, particularly when users did not receive data in any form. We conclude the review with some suggestions for content and process of future studies in this field.

A thematic synthesis of qualitative studies and surveys of the psychological experience of painful endometriosis.

BACKGROUND: Endometriosis is a widespread problem in women of reproductive age, causing cyclical and non-cyclical pain in the pelvis and elsewhere, and associated with fatigue, fertility problems, and other symptoms. As a chronic pain problem, psychological variables are important in adjustment and quality of life, but have not been systematically studied. METHODS: A systematic search of multiple databases was conducted to obtain surveys and qualitative studies of women's experience of pain from endometriosis. Surveys were combined narratively; qualitative studies were combined by thematic synthesis, and the latter rated for methodological quality. RESULTS: Over 2000 records were screened on title and abstract, and provided 22 surveys and 33 qualitative studies from which accounts could be extracted of the psychological components of pain in endometriosis. Surveys mostly addressed quality of life in endometriosis, with poorer quality of life associated with higher levels of pain and of distress, but few referred to coherent psychological models. Qualitative studies focused rather on women's experience of living with endometriosis, including trajectories of diagnosis and treatment, with a few addressing meaning and identity. Thematic synthesis provided 10 themes, under the groupings of internal experience of endometriosis (impact on body, emotions, and life); interface with the external world (through self-regulation and social regulation); effects on interpersonal and social life, and encounters with medical care. CONCLUSIONS: The psychological components of pain from endometriosis only partly corresponded with standard psychological models of pain, derived from musculoskeletal pain studies, with fewer fears about physical integrity and more about difficulties of managing pain and other symptoms in social settings, including work. Better understanding of the particular psychological threats of endometriosis, and integration of this understanding into medical care with opportunities for psychologically-based pain management, would substantially improve the experience and quality of life of women with painful endometriosis.

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.

Pain: Behavioural expression and response in an evolutionary framework.

An evolutionary perspective offers insights into the major public health problem of chronic (persistent) pain; behaviours associated with it perpetuate both pain and disability. Pain is motivating, and pain-related behaviours promote recovery by immediate active or passive defence; subsequent protection of wounds; suppression of competing responses; energy conservation; vigilance to threat; and learned avoidance of associated cues. When these persist beyond healing, as in chronic pain, they are disabling. In mammals, facial and bodily expression of pain is visible and identifiable by others, while social context, including conspecifics' responses, modulate pain. Studies of responses to pain emphasize onlooker empathy, but people with chronic pain report feeling disbelieved and stigmatized. Observers frequently discount others' pain, best understood in terms of cheater detection-alertness to free riders that underpins the capacity for prosocial behaviours. These dynamics occur both in everyday life and in clinical encounters, providing an account of the adaptiveness of pain-related behaviours.

Trials We Cannot Trust: Investigating Their Impact on Systematic Reviews and Clinical Guidelines in Spinal Pain.

We previously conducted an exploration of the trustworthiness of a group of clinical trials of cognitive-behavioral therapy and exercise in spinal pain. We identified multiple concerns in 8 trials, judging them untrustworthy. In this study, we systematically explored the impact of these trials ("index trials") on results, conclusions, and recommendations of systematic reviews and clinical practice guidelines (CPGs). We conducted forward citation tracking using Google Scholar and the citationchaser tool, searched the Guidelines International Network library and National Institute of Health and Care Excellence archive to June 2022 to identify systematic reviews and CPGs. We explored how index trials impacted their findings. Where reviews presented meta-analyses, we extracted or conducted sensitivity analyses for the outcomes of pain and disability, to explore how the exclusion of index trials affected effect estimates. We developed and applied an 'Impact Index' to categorize the extent to which index studies impacted their results. We included 32 unique reviews and 10 CPGs. None directly raised concerns regarding the veracity of the trials. Across meta-analyses (55 comparisons), the removal of index trials reduced effect sizes by a median of 58% (Inter Quartlie Range (IQR) 40-74). 85% of comparisons were classified as highly, 3% as moderately, and 11% as minimally impacted. Nine out of 10 reviews conducting narrative synthesis drew positive conclusions regarding the intervention tested. Nine out of 10 CPGs made positive recommendations for the intervention(s) evaluated. This cohort of trials, with concerns regarding trustworthiness, has substantially impacted the results of systematic reviews and guideline recommendations. PERSPECTIVE: We found that a group of trials of CBT for spinal pain with concerns relating to their trustworthiness has had substantial impacts on the analyses and conclusions of systematic reviews and clinical practice guidelines. This highlights the need for a greater focus on the trustworthiness of studies in evidence appraisal. PRE-REGISTRATION: Our protocol was preregistered on the Open Science Framework: https://osf.io/m92ax/.

Characteristics of retracted publications related to pain research: a systematic review.

ABSTRACT: Retraction is a mechanism for correcting the scientific record and alerts readers when a study contains unreliable or flawed data. Such data may arise from error or research misconduct. Studies examining the landscape of retracted publications provide insight into the extent of unreliable data and its effect on a medical discipline. We aimed to explore the extent and characteristics of retracted publications in pain research. We searched the EMBASE, PubMed, CINAHL, PsycINFO, and Retraction Watch databases to December 31, 2022. We included retracted articles that (1) investigated mechanisms of painful conditions, (2) tested treatments that aimed to reduce pain, or (3) measured pain as an outcome. Descriptive statistics were used to summarise the included data. We included 389 pain articles published between 1993 and 2022 and retracted between 1996 and 2022. There was a significant upward trend in the number of retracted pain articles over time. Sixty-six percent of articles were retracted for reasons relating to misconduct. The median (interquartile range) time from article publication to retraction was 2 years (0.7-4.3). The time to retraction differed by reason for retraction, with data problems, comprising data falsification, duplication, and plagiarism, resulting in the longest interval (3 [1.2-5.2] years). Further investigations of retracted pain articles, including exploration of their fate postretraction, are necessary to determine the impact of unreliable data on pain research.

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.

The Benefits and Harms of Botulinum Toxin-A in the Treatment of Chronic Pelvic Pain Syndromes: A Systematic Review by the European Association of Urology Chronic Pelvic Pain Panel.

CONTEXT: Patients with chronic pelvic pain syndrome (CPPS) may have pain refractory to conventional management strategies. Botulinum toxin A (BTX-A) is a potential therapeutic option. OBJECTIVE: To evaluate the benefits and harms of BTX-A injections in the treatment of CPPS. EVIDENCE ACQUISITION: A systematic review of the use of BTX-A in the treatment of CPPS was conducted (PROSPERO-ID: 162416). Comprehensive searches of EMBASE, PUBMED, Medline, and SCOPUS were performed for publications between January 1996 and May 2020. Identified studies were screened and selected studies assessed for quality prior to data extraction. The primary outcomes were improvement in pain and adverse events following treatment. Secondary outcomes included quality of life, global response assessment, sexual function, bowel function, and bladder function. EVIDENCE SYNTHESIS: After screening 1001 abstracts, 16 studies including 11 randomised controlled trials were identified, enrolling 858 patients and covering a range of CPPS subtypes. Most studies showed high risks of bias and confounding across all domains. A narrative synthesis was performed as heterogeneity of included studies precluded a meta-analysis and calculation of pooled effect estimates of measured outcomes. BTX-A reduced pain significantly in patients with bladder pain syndrome in two studies and in patients with prostate pain syndrome in one study, but no included studies showed benefit for patients with gynaecological pelvic pain. Adverse event reporting was variable and generally poor, but no serious adverse events were described. CONCLUSIONS: Beneficial effects of BTX-A on pain, quality of life, and functional symptoms were seen in patients with certain CPPS subtypes, but the current evidence level is too weak to allow recommendations about BTX-A use for treating CPPS. PATIENT SUMMARY: Botulinum toxin A is used to treat different pain disorders, but current studies are of insufficient quality to determine whether it reduces pain and improves quality of life in patients with chronic pelvic pain. Further research is needed.

Management of chronic primary pelvic pain syndromes.

Management of chronic pelvic pain (CPP) remains a huge challenge for care providers and a major burden for healthcare systems. Treating chronic pain that has no obvious cause warrants an understanding of the difficulties in managing these conditions. Chronic pain has recently been accepted as a disease in its own right by the World Health Organization, with chronic pain without obvious cause being classified as chronic primary pain. Despite innumerable treatments that have been proposed and tried to date for CPP, unimodal therapeutic options are mostly unsuccessful, especially in unselected individuals. In contrast, individualised multimodal management of CPP seems the most promising approach and may lead to an acceptable situation for a large proportion of patients. In the present review, the interdisciplinary and interprofessional European Association of Urology Chronic Pelvic Pain Guideline Group gives a contemporary overview of the most important concepts to successfully diagnose and treat this challenging disease.