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Background: Although multiple measures of the causes and consequences of chronic non-cancer pain (CNCP) are available and can inform pain management, no quantitative summary of these measures can describe the meaning of pain for a patient. The lived experience of pain tends to be a blind spot in pain management. This study aimed to: (1) integrate qualitative research investigating the lived experience of a range of CNCP conditions; (2) establish common qualitative themes in CNCP experience; and (3) evaluate the relevance of our results through a survey questionnaire based on these themes, administered across the United Kingdom. Methods: Four bibliographic databases were searched from inception to February 2021 to identify Qualitative Evidence Syntheses (QES) that investigated the lived experience of CNCP and its impact on everyday life and activities. Themes and trends were derived by thematic qualitative analysis in collaboration with two patient and public involvement representatives who co-created twenty survey statements. The survey was developed for testing the QES themes for validity in people living with pain. Results: The research team identified and screened 1323 titles, and considered 86 abstracts, including 20 in the final review. Eight themes were developed from the study findings: (1) my pain gives rise to negative emotions; (2) changes to my life and to myself; (3) adapting to my new normal; (4) effects of my pain management strategies; (5) hiding and showing my pain; (6) medically explaining my pain; (7) relationships to those around me; and (8) working while in pain. Each theme gave rise to one or two survey questions. The survey was shared with members of the UK pain community over a 2-week period in November 2021, and was completed by 1219 people, largely confirming the above themes. Conclusion/Implications: This study provides a validated summary of the lived experience of CNCP. It highlights the adverse nature, complications, and consequences of living with CNCP in the UK and the multiple shortcomings in the ways in which pain is addressed by others in the UK. Our findings are consistent with published meta-ethnographies on chronic non-malignant musculoskeletal pain and chronic low-back pain. Despite the underrepresentation of qualitative research in the pain literature compared to quantitative approaches, for understanding the complexity of the lived experience of pain, qualitative research is an essential tool. [ABSTRACT FROM AUTHOR]

Background: Behçet's syndrome (BS) is a rare multi-systemic vasculitis of unknown aetiology. Fibromyalgia syndrome (FMS) is more prevalent in rheumatological conditions such-as BS, than the general population. However, there is limited research into the aetiology and characteristics of pain in BS. Objectives: To describe the pain characteristics and incidence of FMS in people with BS and investigate their relationship with BS disease activity. Methods: A cohort study of BS patients attending the Liverpool Behçet's Centre between February 2017 and March 2019. BS was defined using the International Study Group Criteria. BS severity was assessed using the Behçet's Disease Current Activity Form. FMS was determined from consultant diagnosis. Assessments of pain included: Pain Visual Analogue Scale (PVAS), Pain Mannequin, Brief Pain Inventory, EQ-5D-3L and Short Form McGill. Pain and FMS prevalence were compared between high and low disease activity. Results: 90% reported moderate-severe pain with a median PVAS score of 68/100 [38, 81]. 35.6% of participants had FMS and 46.5% experienced generalized pain. 76% of participants with high disease activity reported severe pain, compared to 39.1% with low disease activity (p =.003). Pain was more generalised in high disease activity (72%) compared to low disease activity (37.7%) (p =.003). FMS was more prevalent in the high disease activity group (52%) than the low disease activity group (29%) (p =.04). Conclusions: This is the first study to explore pain in participants with BS in the United Kingdom. The majority of BS patients experience moderate-severe widespread pain. Severe widespread pain is more prevalent in those with high disease activity. We have demonstrated a relationship between high disease activity, worse pain intensity, and FMS. This paper contributes to the understanding of two conditions which remain to be fully understood, FMS and BS, and generates new hypotheses to describe the interplay between. [ABSTRACT FROM AUTHOR]

Introduction: Joint bleeds in haemophilia cause destruction of articular structures, impaired function and pain. Up to 70% of people with haemophilia (PWH) report chronic pain. Little is known about the pain experiences in PWH in the UK. Aim: To identify prevalence and perceptions of pain among PWH living in the UK. Methods: A cross‐sectional, non‐interventional survey study conducted among PWH (all severities). The survey incorporated elements from validated tools (EQ‐5D; EQ‐VAS) and was distributed via participating treatment centres. Results: Five hundred and ninety‐nine PWH responded, 91% aged > 18. 81% used factor prophylactically or on demand. More pain was reported by those treated on demand versus prophylaxis particularly in those who reported daily pain. 65% reported 'problem joints' based on individual impact rather than medically defined 'target joints', 2/3 reported multiple joint issues. The ankle was most commonly affected. 59% reported frequent pain, with 56% aware of pain constantly or most of the time and were more likely to report less favourable EQ‐5D or EQ‐VAS scores (p <.001). Pain frequency/awareness was consistent across all severities. Most discussed pain with care teams, 31% only when asked; 25% did not discuss it. Pain discussions resulted in physiotherapy referral (63%) analgesia prescription (48%), and a minority specialist pain referral (9%). Most felt well supported with regard to their pain, but 70% reported learning to live with it. Conclusion: Pain affects PWH of all ages and severities even in a well‐resourced country significantly impacting quality of life. Clinicians must be more aware of chronic pain in PWH. Biopsychosocial approaches to pain assessment and management are recommended. [ABSTRACT FROM AUTHOR]

Background: Five to ten percent of women experience period pains that disrupt their lives yet 4 in 5 women believe that their claims for their dysmenorrhea are not taken seriously. Within the process of seeking support and understanding about their pain, they face various barriers that prevent them from finding the answers they deserve. Methods: Semi-structured interviews were conducted with 8 women aged 20–28 to discuss their experiences with dysmenorrhea throughout their time since menarche. Results: Using Scheper-Hughes and Lock understanding of the mindful body, this research explores women's experiences of dysmenorrhea through their physical body (relationship with the body and needing control), the social body (cultural concepts and comparisons to others) and the body politic (medicalisation, the medical team and the transvaginal ultrasound). Conclusions: The impact of these aspects of their mindful bodies developed arguments showing how different actors had an impact on preventing them obtaining the patient-centred care they required without resistance. More must be done to honour the experience of pain women have regarding their periods, especially by healthcare professionals. There must be consistency in the way women are approached for their dysmenorrhea to prevent discrepancies of support. This must be done with clearer guidance on what is offered to women with dysmenorrhea, especially in the primary care setting. [ABSTRACT FROM AUTHOR]

In recent years a considerable body of psychological research has explored the relationship between membership of socio-cultural groups and personal pain perception. Rather less systematic attention has, however, been accorded to how such group membership(s) might influence individual attitudes towards the pain of others. In this paper, immersion in the culture of competitive sport, widely regarded as being exaggeratedly tolerant of risky behaviours around pain, is taken as a case-in-point with students of Physical Education (PE) in tertiary education as the key focus. PE students are highly-immersed in competitive sporting culture both academically and (typically) practically, and also represent a key nexus of cross-generational transmission regarding the norms of sport itself. Their attitudes towards the pain that others should reasonably tolerate during a range of activities, sporting and otherwise, were evaluated through a direct comparison with those of peers much less immersed in competitive sporting culture. In total, N=301 (144 PE, 157 non-PE) undergraduate students in the UK responded to a vignette-based survey. Therein, all participants were required to rate the pain (on a standard 0-10 scale) at which a standardised "other" should desist engagement with a set of five defined sporting and non-sporting tasks, each with weak and strong task severities. Results indicated that PE students were significantly more likely to expect others to persevere through higher levels of pain than their non-PE peers, but only during the sport-related tasks – an effect further magnified when task severity was high. In other tasks, there was no significant difference between groups, or valence of the effect was actually reversed. It is argued that the findings underscore some extant knowledge about the relationship between acculturated attitudes to pain, while also having practical implications for understanding sport-based pedagogy, and its potentially problematic role in the ongoing reproduction of a "culture of risk." [ABSTRACT FROM AUTHOR]

Sight is often considered to be the most valuable sense. However, the way in which senses are defined, considered and researched in science and society has changed over time. Increasingly, definitions of the senses move beyond the five 'traditional' senses of sight, hearing, smell, taste and touch to include functions such as balance, temperature and pain perception. Our senses also interact substantially, and while neural reorganisation in the brain can help to compensate for the loss of one sensory modality, dual or multisensory impairments are a growing issue in the ageing population. This article reports the results of a UK-based cross-sectional online survey, where members of the public were surveyed in March-April 2016 to explore which sense they considered to be most valuable. Participants were first asked to rank the five traditional senses (sight, hearing, touch, smell and taste) plus three other 'non-traditional' senses (balance, temperature and pain) in order of most valuable to least valuable. Sight was indeed ranked by participants as the most valuable sense, followed by hearing and then balance. Overall, these findings substantiate the idea of sight being the most valuable sense among a cross-section of the UK public. This provides a further argument for promotion of eye health as a key priority for public health. However, the broader research on the senses helps to caveat and contextualise such findings. Notably, the importance of sight may be socially and culturally relative, and results could be different if the study were conducted in other contexts, for example in different countries or among people living with sensory loss. It is argued that optometrists have a key role to play in responding to anxieties regarding sight loss, dispelling stigma and fear, and promoting ways to adapt to sight loss. [ABSTRACT FROM AUTHOR]

Background: The purpose of this study was to investigate the effect of two modes of delivery of non-surgical periodontal therapy on patient experience of pain and oral health-related quality of life (OHQoL). Methods: Fifty-nine patients with mild to moderate periodontitis received non-surgical therapy using a piezo-ceramic device (n = 30) or curets (n = 29). Periodontal examinations were carried out at baseline and 8 weeks following therapy. Subjects completed the short form McGill pain questionnaire, visual analog scales regarding sensitivity and satisfaction, and the United Kingdom OHQoL questionnaire (OHQoL-UK) at baseline, treatment, and 1,4, and 8 weeks. Results: Both groups showed improvements in clinical parameters with no significant differences between the groups. Pain scores and OHQoL-UK showed no significant differences between the groups. After treatment, OHQoL UK scores improved from an initially negative effect on quality of life to a level of no effect. Differences in sensitivity scores between the groups were statistically significant at 1 week (P = 0.011), 4 weeks (P = 0.005), and 8 weeks (P = 0.025), favoring the use of the piezo-ceramic device. Conclusions: In mild to moderate periodontitis, therapy had a small positive impact on pain and OHQoL-UK scores. These data support the concept that periodontitis may negatively affect a patient's quality of life and that treatment may improve it. [ABSTRACT FROM AUTHOR]

Importance: Self-harm is a risk factor for suicide in adolescents, with the prevalence highest in young people in group and residential care programs. Although no established risk factors for self-harm exist, adolescents who self-harm may have decreased pain sensitivity, but this has not been systematically investigated., Objective: To assess somatosensory function using quantitative sensory testing (QST) in children and adolescents living in care grouped by the number of episodes of self-harm in the past year and compare their somatosensory profiles with community control participants to investigate associations with the incidence or frequency of self-harm., Design, Setting, and Participants: Recruitment for this cross-sectional study began January 2019 and ended March 2020. Exclusion criteria included intellectual disability (intelligence quotient <70), autism spectrum disorder, or recent serious injury. Children and adolescents aged 12 to 17 years with no underlying health conditions were recruited from local authority residential care settings in Glasgow, UK, and schools and youth groups in London and Glasgow, UK. The volunteer sample of 64 participants included adolescents ages 13 to 17 years (34 [53%] females; 50 [78%] living in residential care; mean [SD] age, 16.34 [1.01] years) with varying incidents of self-harm in the past year (no episodes, 31 [48%]; 1-4 episodes, 12 [19%]; and ≥5 episodes, 2 [33%])., Exposures: Participants were tested using a standardized QST protocol to establish baseline somatosensory function., Main Outcomes and Measures: Associations between somatosensory sensitivity, incidence and frequency of self-harm, residential status, age, gender, and prescription medication were calculated. Secondary outcomes assessed whether self-harm was associated with specific types of tests (ie, painful or nonpainful)., Results: A total of 64 participants ages 13 to 17 years completed testing (mean [SD] age, 16.3 [1.0] years; 34 [53%.] females and 30 [47%] males; 50 [78%] living in group homes). Adolescents with 5 or more self-harm incidences showed significant pain hyposensitivity compared with community control participants after adjusting for age, gender, and prescription drug use (SH group with 5 or more episodes vs control: -1.03 [95% CI, -1.47 to -0.60]; P < .001). Hyposensitivity also extended to nonpainful stimuli, similarly adjusted (SH group with 5 or more episodes vs control: -1.73; 95% CI, -2.62 to -0.84; P < .001). Pressure pain threshold accounted for most of the observed variance (31.1% [95% CI, 10.5% to 44.7%]; P < .001)., Conclusions and Relevance: The findings of this study suggest that sensory hyposensitivity is a phenotype of Adolescents who self-harm and that pressure pain threshold has clinical potential as a quick, inexpensive, and easily interpreted test to identify adolescents at increased risk of repeated self-harm.

Summary: Hidradenitis suppurativa (HS) is a chronic skin disease. It causes painful boils in specific body areas such as the armpits and the groins. This disease affects about 1% of people in the U.K. It is more common in women. HS causes pain, but few studies have looked at this aspect. Depression and anxiety affects how pain is experienced. The patient's age and sex can also influence the experience of pain. The authors aimed to study pain in patients with HS. They handed out questionnaires in a HS specialist clinic in Roskilde, Denmark (Oct 2017 – Mar 2018). Patients described their pain and difficulty of HS, and reported any symptom of depression and anxiety. Pain was described with different words. The most common words were 'shooting' (83%), 'itchy' (79%) and 'blinding' (75%). The study revealed that pain in HS relates to severity of HS and to symptoms of anxiety and depression. The authors found that the pain experience of HS patients can be divided into two different pain qualities: the so‐called nociceptive and neuropathic pain. These two pain types are usually treated with different medications: anti‐inflammatory drugs (e.g. aspirin) and antidepressants. In general, HS patients are more often depressed than other people. HS patients are likely to benefit from different pain relievers including both anti‐inflammatory drugs and antidepressants to treat their pain. However, more studies are needed to make definite recommendations on treatment of HS pain. This summary relates to the study: Pain perception in patients with hidradenitis suppurativa Linked Article: Nielsen et al. Br J Dermatol 2020; 182:166–174 [ABSTRACT FROM AUTHOR]

Background Persistent, unpredictable pain is one of the most burdensome features of juvenile idiopathic arthritis (JIA) which is a relapsing-remitting inflammatory musculoskeletal condition presenting in children and young people under 16 years. Recent research into perceptions of illness in young people has found that conceptualisations of long-term disease are mainly about the most salient features and symptoms, not of the illness as a whole. Particularly in young people with JIA, perceptions of pain are central to the individuals' beliefs about the chronic condition. In paediatric pain research in general, the study of pain beliefs has mainly focused on pain catastrophising. Associations between other potentially important pain beliefs and pain outcomes (e.g. reporting pain or well-being) have not been explored to date. The aim of this study was to explore a wide range of pain perceptions in young people with JIA and to investigate whether these pain beliefs were associated with pain severity or well-being. Methods Cross-sectional data from the largest UK cohort study of children with JIA were analysed (the Childhood Arthritis Prospective Study- CAPS). Participants aged over 11 years completed 'The Pain Perceptions Questionnaire for Young People (PPQ–YP)' which assesses pain beliefs corresponding to the Common Sense-Self Regulatory framework first proposed by Leventhal and colleagues in the 1980s. Self-reported pain severity scores were captured using a Visual Analogue Scale (VAS). Emotional well-being was assessed using the Positive and Negative Affect Scale (PANAS). Associations were explored using Spearman's Rank Correlation. Results 223 participants (64% female) completed the PPQ-YP. 38.2% of participants had a diagnosis of oligoarthritis, 29.6% had polyarthritis and equal proportions of participants had systemic, psoriatic or enthesitis related JIA (7.3%). Higher reported pain severity was significantly correlated with stronger beliefs about the greater impact of pain on life (rho=0.494, p < 0.001), pain unpredictability (rho=0.369, p < 0.001) and pain persistence (rho=0.278,p<0.001). Higher pain controllability beliefs (that pain was controllable) were significantly associated with lower self-reported pain severity (rho=-0.526, p < 0.001). Stronger beliefs about the impact of pain on life (rho=0.425,p=0.001) and pain coherence (poorer understanding about own pain: rho=-0.295,p=0.021) were significantly associated with more negative mood. Conclusion Pain beliefs (particularly about consequences, unpredictability, persistence and understanding) are linked to levels of pain severity and well-being in children with JIA. Adding to the evidence base on the link between pain catastrophising and illness outcomes, this research enhances our understanding of long-term illness and pain perceptions in young people through the implication of a wider range of pain beliefs and cognitions on illness outcomes. The PPQ-YP identified salient pain beliefs which should be considered in the design of potential interventions to improve pain outcomes in this group. Future research should aim to explore whether these perceptions can predict other important illness outcomes. Conflicts of Interest The authors declare no conflicts of interest. [ABSTRACT FROM AUTHOR]

Objectives: Culture and ethnicity are acknowledged as important factors in the context of the biopsychosocial model. They may contribute to explaining the experience of pain, therapeutic encounters within healthcare, and the strategies that individuals use to cope with pain. The present study explored these issues in a sample of Indian Asian women in the UK., Methods: Based on a phenomenological approach, 17 women participated in five semi-structured group interviews. Data were analysed using qualitative content analysis, so as to identify core themes and subthemes inductively from the data., Results: Six themes were identified: meaning of pain; personal experience of pain; causes of pain; coping strategies; family and friends; experience of healthcare. Pain was conceptualized in both physical and mental terms, and its experience was explained largely in terms of functional consequences. The causes of pain offered suggested externalized beliefs, relating to events in participants' lives, rather than being expressed in biomedical terms. Alongside culture-specific therapies, the women spoke of coping strategies based on rest and activity. Although satisfaction with healthcare appeared to be high overall, problems due to communication - sometimes related to a language barrier - were voiced by some participants., Conclusions: Greater attention to cultural aspects of the pain experience may assist health professionals in communicating with and managing patients with pain from ethnic minority backgrounds., (Copyright © 2018 John Wiley & Sons, Ltd.)

Pain-measurement tools are often criticized for not addressing the influence of culture and ethnicity on pain. This study examined how children who speak English as a primary or additional language discuss pain. Two methods were used in six focus group interviews with 34 children aged 4-7 years: (i) use of drawings from the Pediatric Pain Inventory to capture the language used by children to describe pain; and (ii) observation of the children's placing of pain drawings on red/amber/green paper to denote perceived severity of pain. The findings demonstrated that children with English as an additional language used less elaborate language when talking about pain, but tended to talk about the pictures prior to deciding where they should be placed. For these children, there was a positive significant relationship between language, age, and length of stay in the UK. The children's placement of pain drawings varied according to language background, sex, and age. The findings emphasize the need for sufficient time to assess pain adequately in children who do not speak English as a first language., (© 2013 Wiley Publishing Asia Pty Ltd.)