Beliefs About Pain in Pediatric Inflammatory and Noninflammatory Chronic Musculoskeletal Conditions: A Scoping Review.

OBJECTIVE: The Common Sense Self-Regulatory Model posits that beliefs about pain influence coping behaviors and subsequent physical and mental health outcomes in children/young people with chronic musculoskeletal conditions. It was unclear how and what beliefs had been investigated in this population, and whether there were similarities and differences in beliefs held about pain by those experiencing inflammatory versus noninflammatory musculoskeletal conditions. This scoping review addressed this gap. METHODS: A systematic search was conducted using four databases (MEDLINE, PsycINFO, Embase, and CINAHL) in November 2021. Primary studies exploring key stakeholders' (including children, parents, and/or healthcare professionals) beliefs about pain underlying pediatric chronic musculoskeletal conditions were synthesized. RESULTS: Eighteen articles were identified. Cross-sectional designs were predominantly used to explore beliefs (n = 6). The majority used questionnaires to assess beliefs (n = 12). Beliefs common across musculoskeletal conditions were that children/young people felt their pain was not understood by others, and pain affected their physical functioning. Differences included children/young people and parents thinking they had some ability to control pain, and causal beliefs relating to underlying disease activity. These pain beliefs were more likely to be held in relation to inflammatory diagnoses. In contrast, children/young people and parents were more likely to view pain as uncontrollable, with more uncertainty regarding underlying causes, relating to noninflammatory diagnoses. CONCLUSIONS: Methods used to explore pain beliefs were inconsistent. Studies identified similarities and differences which appear to be closely related to the underlying diagnosis. Findings justify further exploration to identify potentially modifiable targets to improve pain outcomes in this population.

"My gut feeling is ": An Ethnographic Study Exploring Interprofessional Communication About Children and Adolescents With Chronic Musculoskeletal Pain in Paediatric Rheumatology.

Interprofessional communication about inflammatory and non-inflammatory musculoskeletal conditions is an important component of assessment and management in paediatric rheumatology. Chronic pain is a feature of some of these conditions which likely influences the extent and type of communication about pain. Research investigating interprofessional communication about paediatric pain is limited but has found that communication is inclusive of the biopsychosocial context of children/adolescents as well as their families. The aim of this ethnographic study was to explore interprofessional communication about children and adolescents with chronic musculoskeletal pain in paediatric rheumatology. We observed forty-five healthcare professionals recruited from 3 UK paediatric rheumatology teams during thirty multi-disciplinary team meetings. Contemporaneous field notes created during observations were analysed using grounded theory procedures. Core processes identified in interprofessional communication involved describing, making sense of, and managing children/adolescents with pain and their families. Topic areas discussed within these core processes included healthcare professional perceptions about children's and parents' personality characteristics, as well as healthcare professionals' familiarity with families. Underlying diagnoses and possible attributions of pain aetiology were also discussed. Interprofessional narratives included consideration of the potential anxieties and uncertainties about pain within families. Healthcare professionals communicated about strategies for managing expectations about pain. These findings characterise the nuances in interprofessional communication about pain and can be used to inform future work aimed at understanding and optimising the impact of interprofessional communication on clinical decisions and pain outcomes. PERSPECTIVE: This study characterises the processes (series of actions), the function (purpose) and the content (topic areas) of interprofessional communication about paediatric pain in rheumatology settings. These findings should be used to inform interventions targeting both the appropriateness and effectiveness of this communication.

Is time a healer? How quality of life changes over time reported by parents of children and young people with juvenile idiopathic arthritis.

OBJECTIVE: To investigate changes in health-related quality of life (HRQoL) in children and young people with JIA (Juvenile Idiopathic Arthritis) over 3 years following diagnosis. METHODS: Data on children and young people recruited to the Childhood Arthritis Prospective Study (CAPS) were selected if >5 years of age at diagnosis. HRQoL was assessed at diagnosis (baseline), 1 year and 3 years using the proxy-reported Child Health Questionnaire (CHQ) completed by a parent or guardian. The CHQ measures aspects of HRQoL including physical functioning and mental health. Analyses included descriptive statistics, comparison with a US reference population and analysis of CHQ scores longitudinally and by gender and age of onset. RESULTS: Using CHQ data from parents/guardians of 182 CAPS study participants [median age 9.6 years (interquartile range 7.2-12.2)], all HRQoL domains significantly improved over the 3 year follow-up, except general health perceptions. Physical health domains showed greater improvement than psychosocial domains, although psychosocial scores were generally higher than physical scores throughout. Although similar at diagnosis, at 1 year females had significantly worse HRQoL than males in physical functioning (P = 0.03), bodily pain (P = 0.03), mental health (P = 0.00), social-emotional (P = 0.02) and social-physical (P < 0.001). Differences largely remained at 3 years. Age at onset was not significantly associated with HRQoL. CONCLUSION: Children and young people with JIA have low HRQoL across domains compared with the reference population. This improves within 3 years of diagnosis, with the greatest improvement within the first year. Early developmentally appropriate clinical intervention is recommended to reduce both psychosocial and physical impact of JIA. The lower HRQoL scores of females require further investigation.

'That's what makes me better': Investigating children and adolescents' experiences of pain communication with healthcare professionals in paediatric rheumatology.

BACKGROUND: Pain communication should be an integral part of clinical consultations, particularly in paediatric rheumatology where children and adolescents frequently present with chronic musculoskeletal pain. To date, literature exploring the nature of and extent to which pain communication occurs has focused on healthcare professionals as respondents, yielding inconsistent and incomplete findings. The aim of this study was to explore children and adolescents' experiences of pain communication in the context of paediatric rheumatology consultations. METHODS: Data were collected using semi-structured telephone interviews with children and adolescents recruited from three tertiary paediatric rheumatology centres in the United Kingdom. A framework analysis approach was used to explore the similarities and divergences in participant accounts. RESULTS: Twenty-six children and adolescents (aged 6-18 years, median = 14, 58% female) participated. Diagnoses included: juvenile idiopathic arthritis, Chronic Idiopathic Pain Syndromes, Ehlers Danlos Syndrome/Hypermobility. Four themes were identified: (1) Co-ordination of pain communication; (2) Barriers to pain communication; (3) Facilitators of pain communication; (4) Dissatisfaction with pain communication. These themes particularly encompassed the process of communication, disclosure of effective and ineffective approaches and the impact of communication. Participants expected questions about pain, felt cared about and found talking about pain natural. Challenges included augmenting the feeling of being different to peers and concerns about management plans changing as a result of pain conversations. CONCLUSIONS: Children and adolescents recalled a range of effective and ineffective pain communication approaches. Our study informs recommendations which highlight how healthcare professionals can improve their communication about pain with children and adolescents in the future. SIGNIFICANCE: Our findings demonstrate that children and adolescents attending paediatric rheumatology expect to be and value being asked about their pain during consultations with healthcare professionals. Children and adolescents remember many of the processes involved, experiences of and the outcomes of pain communication. The current study reveals insights which can improve healthcare professional pain communication with children and adolescents. Our study introduces key recommendations for healthcare professionals to have more effective pain conversations in future.

"I just want to be normal": A qualitative investigation of adolescents' coping goals when dealing with pain related to arthritis and the underlying parent-adolescent personal models.

The aim of the current study was to examine adolescents' goals when coping with pain and map these goals to the cognitive and emotional profiles of both adolescent and their parent. 17 adolescents (11-16 years) and their parents participated in a cohort study of Juvenile Idiopathic Arthritis (JIA); the adolescents, took part in a two-part interview (about their pain perceptions and about a recent pain experience) and the parents completed an open-ended qualitative survey. The three datasets were analysed following a qualitative framework approach. A coping framework was developed and cognitive and emotional profiles for both adolescent and parent were mapped back to the framework. The overall goal of adolescents was to preserve social identity, by either focusing on maintaining a "normal" lifestyle (sub-coping goal one) or managing the pain (sub-coping goal two). Across these two sub-coping goals, the adolescents held similar cognitive profiles (beliefs about timeline, consequences, control) but different emotional profiles such as feeling fine/happy compared with feeling angry and frustrated. Conversely, the parents' cognitive and emotional profiles were mapped back to the two groups and found that their beliefs were different across the two sub-coping goals but had similar emotional profiles across the two groups such as worry. Both the adolescents' emotional representations and parental cognitive profiles seem to be related to how the adolescent perceives a pain event, deals with the pain, and the overall coping goal of the adolescent. Findings are suggestive that parental pain beliefs influence the adolescents' pain representations and their coping goals but are also driven by adolescents' emotions. Further work on these potential pathways is needed. Family interventions should be designed, targeting coping goals taking into consideration the importance of emotions for adolescents and parental pain beliefs.

Sleep Disturbance and Quality of Life in Rheumatoid Arthritis: Prospective mHealth Study.

BACKGROUND: Sleep disturbances and poor health-related quality of life (HRQoL) are common in people with rheumatoid arthritis (RA). Sleep disturbances, such as less total sleep time, more waking periods after sleep onset, and higher levels of nonrestorative sleep, may be a driver of HRQoL. However, understanding whether these sleep disturbances reduce HRQoL has, to date, been challenging because of the need to collect complex time-varying data at high resolution. Such data collection is now made possible by the widespread availability and use of mobile health (mHealth) technologies. OBJECTIVE: This mHealth study aimed to test whether sleep disturbance (both absolute values and variability) causes poor HRQoL. METHODS: The quality of life, sleep, and RA study was a prospective mHealth study of adults with RA. Participants completed a baseline questionnaire, wore a triaxial accelerometer for 30 days to objectively assess sleep, and provided daily reports via a smartphone app that assessed sleep (Consensus Sleep Diary), pain, fatigue, mood, and other symptoms. Participants completed the World Health Organization Quality of Life-Brief (WHOQoL-BREF) questionnaire every 10 days. Multilevel modeling tested the relationship between sleep variables and the WHOQoL-BREF domains (physical, psychological, environmental, and social). RESULTS: Of the 268 recruited participants, 254 were included in the analysis. Across all WHOQoL-BREF domains, participants' scores were lower than the population average. Consensus Sleep Diary sleep parameters predicted the WHOQoL-BREF domain scores. For example, for each hour increase in the total time asleep physical domain scores increased by 1.11 points (ß=1.11, 95% CI 0.07-2.15) and social domain scores increased by 1.65 points. These associations were not explained by sociodemographic and lifestyle factors, disease activity, medication use, anxiety levels, sleep quality, or clinical sleep disorders. However, these changes were attenuated and no longer significant when pain, fatigue, and mood were included in the model. Increased variability in total time asleep was associated with poorer physical and psychological domain scores, independent of all covariates. There was no association between actigraphy-measured sleep and WHOQoL-BREF. CONCLUSIONS: Optimizing total sleep time, increasing sleep efficiency, decreasing sleep onset latency, and reducing variability in total sleep time could improve HRQoL in people with RA.

Data protection, information governance and the potential erosion of ethnographic methods in health care?

With the most recent developments to the European General Data Protection Regulations (GDPR) introduced in May 2018, the resulting legislation meant a new set of considerations for study approvers and health-care researchers. Compared with previous legislation in the UK (The Data Protection Act, 1998), it introduced more extensive and directive principles, requiring anybody 'processing' personal data to specifically define how this data will be obtained, stored, used and destroyed. Importantly, it also emphasised the principle of accountability, which meant that data controllers and processors could no longer just state that they planned to adhere to lawful data protection principles, they also had to demonstrate compliance. New questions and concerns around accountability now appear to have increased levels of scrutiny in all areas of information governance (IG), especially with regards to processing confidential patient information. This article explores our experiences of gaining required ethical and regulatory approvals for an ethnographic study in a UK health-care setting, the implications that the common law duty of confidentiality had for this research, and the ways in which IG challenges were overcome. The purpose of this article was to equip researchers embarking on similar projects to be able to navigate the potentially problematic and complex journey to approval.

Identifying the content and context of pain within paediatric rheumatology healthcare professional curricula in the UK: a summative content analysis.

BACKGROUND: The curriculum for professionals working in paediatric rheumatology should include pain but it is unclear to what extent this currently occurs. The aim of this study was to identify pain-related curriculum content and the context in which pain is presented in educational and training documentation for healthcare professionals in this clinical speciality. METHODS: Core curricula documents from UK based professional organisations were identified in partnership with healthcare professionals. Documents were analysed using a summative content analysis approach. Key pain terms were quantified and weighted frequencies were used to explore narrative pain themes. Latent content was interpreted qualitatively to explore the context within which pain terms were positioned. RESULTS: Nine curriculum documents were identified and analysed from doctors, nurses, physiotherapists and occupational therapists specialising in paediatric rheumatology. Pain themes represented a mean percentage of 1.51% of text across all documents. Pain was rarely presented in the context of both inflammatory and non-inflammatory condition types despite being a common feature of each. Musculoskeletal pain was portrayed simply as a 'somatic' symptom, rather than as a complex phenomenon involving biological and psychosocial processes. Content around the assessment and management of pain was vague and inexplicit. CONCLUSION: Current educational and training documentation in paediatric rheumatology do not include core pain topics. Curricula for these healthcare professionals would benefit from updates in contemporary pain theories and examples of in-context, evidence-based pain practices. This should be a priority starting point for optimising patient pain care in paediatric musculoskeletal healthcare.

Implementation of the PsoWell™ Model for the Management of People with Complex Psoriasis.

The Psoriasis and Well-being (PsoWell)™ training programme, incorporating motivational interviewing, improves clinicians' knowledge and skills to manage complex psoriasis, including behaviour change. The aims of this study were to deliver the PsoWell™ training programme to dermatology specialists, and to evaluate the acceptability and feasibility of implementing the PsoWell™ model across dermatology services. Framework analysis of 19 qualitative semi-structured interviews was performed, following delivery of nine, 1-day PsoWell™ training days involving 119 participants. Two themes were identified: "Perceptions and Priorities" and "Awareness", sub-divided into: "Awareness Not Competence" and "Increasing Awareness". The PsoWell™ model was found to be acceptable and feasible to implement across dermatology settings. Participants were more skilled and motivated to address psycho-logical issues, including behaviour change, but wanted further training to ensure competency. The trainees claimed that scepticism among some colleagues regarding whole-patient management might prevent uptake. Data show-ing the impact on health outcomes are needed and might overcome scepticism. Remote consultation could adopt the PsoWell™ approach.

Changes in the illness perceptions of patients with rheumatoid arthritis over the first year of methotrexate therapy.

OBJECTIVES: To describe the illness perceptions of patients with RA over the first year of MTX treatment, and the association between illness perceptions and outcomes. METHODS: Data came from the Rheumatoid Arthritis Medication Study (RAMS), a UK multicentre cohort study of RA patients starting MTX for the first time. Patients were assessed at baseline, and at 6 and 12 months. Patients completed the Brief Illness Perception Questionnaire (B-IPQ) at each assessment, as well as other patient-reported outcomes (PROs). The inflammation score (2-component DAS28) was calculated. Subgroups of patients with similar trajectories across the eight (B-IPQ) items were identified using a latent class growth model. Predictors of group membership were identified using multinomial logistic regression. Associations between subgroups and PROs over follow-up were assessed using linear mixed models. RESULTS: Three subgroups were identified in the analysis population (N = 1087): Positive illness perceptions (N = 322), Negative illness perceptions (N = 534) and Improvers (N = 231) who switched from negative to positive illness perceptions over follow-up. Baseline disability was associated with group membership [Positive vs Negative: relative risk ratio (RRR) 0.37, 95% CI: 0.25, 0.54; Improvers vs Negative: RRR 0.60, 95% CI: 0.43, 0.83], as were other PROs (pain, fatigue, anxiety, depression). The Negative group had worse disability, pain and fatigue over follow-up compared with the other groups, controlling for inflammation. CONCLUSION: Negative illness perceptions are associated with poor PROs over time. The Improvers subgroup illustrated that illness perceptions can change in RA. Illness perceptions represent a potential therapeutic target that should be assessed using randomized trials.

Progress to Date in Advancing Stratified Medicine in Psoriasis.

Stratified medicine is the tailoring of treatment to the individual characteristics of each patient. This is a challenging task in the context of psoriasis, a complex disease with a variety of phenotypic presentations and a comorbidity burden that extends beyond cutaneous manifestations. In recent years, considerable progress has been made in understanding the immunology of psoriasis, and this has informed the development of increasingly precise and efficacious therapies. However, not all patients respond to biologic therapy, and access is limited to patients with moderate to severe disease. However, subpopulations of patients are emerging with distinct patterns of response to therapy, largely determined by clinical and pharmacogenomic factors. Despite progress to date, the natural history of psoriasis remains poorly understood. It is likely that disease onset, progression, development of comorbidities and response to therapy are due to a combination of genetic, inflammatory and environmental factors. We envision that a greater understanding of the natural history of psoriasis will be a key factor in progressing a stratified medicine approach to patient care, as will earlier intervention in the course of the disease.

'We're the First Port of Call' - Perspectives of Ambulance Staff on Responding to Deaths by Suicide: A Qualitative Study.

INTRODUCTION: Exposure to suicide is a known risk factor for suicide. Ambulance staff are exposed to work-related stressors including attending suicides, which may elevate their risk for mental health problems/suicide. Little is known about ambulance staff's perspectives on how they experience these events and whether they feel equipped to respond to bereaved families at the scene of death. This study explores the perspectives of ambulance staff about responding to deaths by suicide. MATERIALS AND METHODS: A convenience sample of ambulance staff recruited from one ambulance service in England. In-depth, qualitative, semi-structured face-to-face interviews conducted with nine ambulance staff (six male, three female) to explore experiences of responding to suicide. Data analyzed using thematic analysis. RESULTS: Participants reported the experience of job-related strain including exposure to the suicide/suicidal ideation of colleagues; they described suppressing their distress despite significant emotional impact. All participants had been personally bereaved by suicide and responding to suicide was a common part of their job. They were often the first professionals at the scene, and undertook varied and often conflicting roles: negotiating with patients in crisis; informing individuals of the death of a loved one; preserving the body/potential crime scene; dealing with the intense emotional reactions of bereaved individuals. Participants reported long-term, salient memories of these events; however, there was a reported lack of acknowledgment in the workplace that suicides may be traumatic and no guidance for staff on how to cope. Opportunities to debrief were reportedly rare, and there was reluctance to access work-based liaison services. Training in how to respond to individuals bereaved by suicide was also lacking. DISCUSSION: The study is the first to reveal the complex challenges faced by ambulance staff in responding to suicide without adequate training and support. It demonstrates the potential impact that responding to suicide can have personally and professionally on staff, and emphasizes the need for employers to support staff wellbeing in better ways. Training and postvention support could enable better coping among staff, more effective support for bereaved individuals and reduce the risk of death by suicide both in those bereaved by suicide and in ambulance staff.

"Asking Too Much?": Randomized N-of-1 Trial Exploring Patient Preferences and Measurement Reactivity to Frequent Use of Remote Multidimensional Pain Assessments in Children and Young People With Juvenile Idiopathic Arthritis.

BACKGROUND: Remote monitoring of pain using multidimensional mobile health (mHealth) assessment tools is increasingly being adopted in research and care. This assessment method is valuable because it is challenging to capture pain histories, particularly in children and young people in diseases where pain patterns can be complex, such as juvenile idiopathic arthritis (JIA). With the growth of mHealth measures and more frequent assessment, it is important to explore patient preferences for the timing and frequency of administration of such tools and consider whether certain administrative patterns can directly impact on children's pain experiences. OBJECTIVE: This study aimed to explore the feasibility and influence (in terms of objective and subjective measurement reactivity) of several time sampling strategies in remote multidimensional pain reporting. METHODS: An N-of-1 trial was conducted in a subset of children and young people with JIA and their parents recruited to a UK cohort study. Children were allocated to 1 of 4 groups. Each group followed a different schedule of completion of MPT for 8 consecutive weeks. Each schedule included 2 blocks, each comprising 4 different randomized time sampling strategies, with each strategy occurring once within each 4-week block. Children completed MPT according to time sampling strategies: once-a-day, twice-a-day, once-a-week, and as-and-when pain was experienced. Adherence to each strategy was calculated. Participants completed the Patient-Reported Outcomes Measurement Information System Pain Interference Scale at the end of each week to explore objective reactivity. Differences in pain interference scores between time sampling strategies were assessed graphically and using Friedman tests. Children and young people and their parents took part in a semistructured interview about their preferences for different time sampling strategies and to explore subjective reactivity. RESULTS: A total of 14 children and young people (aged 7-16 years) and their parents participated. Adherence to pain reporting was higher in less intense time sampling strategies (once-a-week=63% [15/24]) compared with more intense time sampling strategies (twice-a-day=37.8% [127/336]). There were no statistically significant differences in pain interference scores between sampling strategies. Qualitative findings from interviews suggested that children preferred once-a-day (6/14, 43%) and as-and-when pain reporting (6/14, 43%). Creating routine was one of the most important factors for successful reporting, while still ensuring that comprehensive information about recent pain was captured. CONCLUSIONS: Once-a-day pain reporting provides rich contextual information. Although patients were less adherent to this preferred sampling strategy, once-a-day reporting still provides more frequent assessment opportunities compared with other less intense or overburdensome schedules. Important issues for the design of studies and care incorporating momentary assessment techniques were identified. We demonstrate that patient reporting preferences are key to accommodate and are important where data capture quality is key. Our findings support frequent administration of such tools, using daily reporting methods where possible.

Experiences of support from primary care and perceived needs of parents bereaved by suicide: a qualitative study.

BACKGROUND: People bereaved by suicide are a vulnerable group, also at risk of dying by suicide. The importance of postvention support (intervention after suicide) has recently been highlighted; however, little is known about the support needs of parents bereaved by suicide in the UK, and the role played by general practice. AIM: To explore the perspectives, experiences, and support needs of parents bereaved by suicide. DESIGN AND SETTING: This was a qualitative study, with semi-structured interviews conducted between 2012 and 2014 in the north of England and the Midlands, with parents bereaved by their son or daughter's suicide. METHOD: Interviews explored parents' experiences of suicide bereavement following the death of their son or daughter, with a focus on their experiences of support from primary care. Interviews were analysed thematically using constant comparison. RESULTS: Twenty-three interviews were conducted. Three themes were identified from the data: the importance of not feeling alone; perceived barriers to accessing support; and the need for signposting for additional support. Some parents reported having experienced good support from their general practice; others described a number of barriers to accessing help, including triage processes. Primary care was considered to be an important avenue of support but GPs were often perceived as uncertain how to respond. The need for information, signposting to avenues of support, and the helpfulness of group support were also highlighted. CONCLUSION: Parents believed it was important that people working in general practice have an awareness of suicide bereavement and understanding of their needs, including knowledge of where to direct people for further support.

Evaluation of the Impact of the PABBS Suicide Bereavement Training on Clinicians' Knowledge and Skills.

Background: Health-care professionals do not routinely receive training on how best to support parents bereaved by suicide. Evidence-based training - Postvention Assisting Those Bereaved by Suicide (PABBS) - was designed to address this gap. Aims: The study aimed (a) to pilot PABBS training and evaluate its perceived effectiveness (impact on self-reported knowledge, skills and confidence) in managing suicide bereavement; and (b) to explore training acceptability. Method: A pre- and postevaluation design was used. Professionals attended intensive, structured 1-day PABBS training comprising: didactic/interactive teaching; practice-orientated activities supported with real-life materials and a manual/workbook. Evaluation forms completed immediately before and after training analyzed: (a) self-reported changes in knowledge, skills, and confidence (perceived effectiveness of training); and (b) the acceptability of training. Results: In total, 62 professionals completed training. Perceived knowledge, skills, and confidence improved after training as did self-reported understanding, motivation to learn more, and intention to change practice. Training was highly rated, particularly the evidence-based, real-life materials, with some suggestions for improvement. Limitations: Self-selected sample and reliance on self-report measures are the study's limitations. Conclusion: PABBS training may help address gaps in professionals' capacity to support parents bereaved by suicide. The evidence-based content was highly acceptable and appeared to be a key ingredient in effecting self-reported changes in attitudes/intentions.

"Reluctant to Assess Pain": A Qualitative Study of Health Care Professionals' Beliefs About the Role of Pain in Juvenile Idiopathic Arthritis.

OBJECTIVE: Reducing pain is one of the main health priorities for children and young people with juvenile idiopathic arthritis (JIA); however, some studies indicate that pain is not routinely assessed in this patient group. The aim of this study was to explore health care professionals' (HCPs) beliefs about the role of pain and the prioritization of its assessment in children and young people with JIA. METHODS: Semi-structured interviews were conducted with HCPs who manage children and young people with JIA in the UK (including consultant and trainee pediatric rheumatologists, nurses, physical therapists, and occupational therapists). Data were analyzed qualitatively following a framework analysis approach. RESULTS: Twenty-one HCPs participated. Analyses of the data identified 6 themes, including lack of training and low confidence in pain assessment, reluctance to engage in pain discussions, low prioritization of pain assessment, specific beliefs about the nature of pain in JIA, treatment of pain in JIA, and undervaluing pain reports. Assessment of pain symptoms was regarded as a low priority and some HCPs actively avoided conversations about pain. CONCLUSION: These findings indicate that the assessment of pain in children and young people with JIA may be limited by knowledge, skills, and attitudinal factors. HCPs' accounts of their beliefs about pain in JIA and their low prioritization of pain in clinical practice suggest that a shift in perceptions about pain management may be helpful for professionals managing children and young people with this condition.

The predictors of and reasons for non-adherence in an observational cohort of patients with rheumatoid arthritis commencing methotrexate.

OBJECTIVE: In order to develop interventions to optimize MTX use for the treatment of RA we evaluated the rate of, reasons for and predictors of MTX non-adherence during the first 6 months of therapy. METHODS: The Rheumatoid Arthritis Medication Study (RAMS) is a prospective multicentre cohort study of incident MTX users in the UK. Prior to MTX commencement demographic, clinical and psychological data were collected. A weekly patient-completed diary recorded MTX dose, possible side effects and adherence over 26 weeks. The number of non-adherent weeks was calculated. Potential baseline predictors of ever non-adherence (⩾1 week non-adherent) during the first 6 months of MTX therapy were identified using logistic regression analyses. RESULTS: 606 patients with RA were included; 69% female, mean (s.d.) age 60 (13) years and DAS28 score 4.2 (1.2). Over the first 6 months following MTX initiation, 158 (26%) patients were ever non-adherent (71% intentional, 19% non-intentional, 10% unexplained) and mean (s.d.) number of non-adherent weeks was 2.5 (2.1). Multivariable predictors of ever non-adherence included DAS28 [odds ratios (OR) 1.1, 95% CI 1.0, 1.4], fatigue (OR 1.1, 95% CI 1.0, 1.2 per cm), ⩾2 comorbidities vs no comorbidities (OR 1.9, 95% CI 1.1, 3.5) and high medication concerns despite perceived need (OR 1.1, 95% CI 1.0, 1.1 per unit decrease in need/concern differential). CONCLUSION: This is the largest study evaluating early intentional and non-intentional non-adherence to MTX, which has identified that patient beliefs and multi-morbidity strongly link with non-adherence. These findings can direct the design of and provide potential targets for interventions to improve patient adherence.

"Seeing Pain Differently": A Qualitative Investigation Into the Differences and Similarities of Pain and Rheumatology Specialists' Interpretation of Multidimensional Mobile Health Pain Data From Children and Young People With Juvenile Idiopathic Arthritis.

BACKGROUND: In contrast to the use of traditional unidimensional paper-based scales, a mobile health (mHealth) assessment of pain in children and young people (CYP) with juvenile idiopathic arthritis (JIA) enables comprehensive and complex multidimensional pain data to be captured remotely by individuals. However, how professionals use multidimensional pain data to interpret and synthesize pain reports gathered using mHealth tools is not yet known. OBJECTIVE: The aim of this study was to explore the salience and prioritization of different mHealth pain features as interpreted by key stakeholders involved in research and management of pain in CYP with JIA. METHODS: Pain and rheumatology specialists were purposively recruited via professional organizations. Face-to-face focus groups were conducted for each specialist group. Participants were asked to rank order 9 static vignette scenarios created from real patient mHealth multidimensional pain data. These data had been collected by a researcher in a separate study using My Pain Tracker, a valid and acceptable mHealth iPad pain communication tool that collects information about intensity, severity, location, emotion, and pictorial pain qualities. In the focus groups, specialists discussed their decision-making processes behind each rank order in the focus groups. The total group rank ordering of vignette scenarios was calculated. Qualitative data from discussions were analyzed using latent thematic analysis. RESULTS: A total of 9 pain specialists took part in 1 focus group and 10 rheumatology specialists in another. In pain specialists, the consensus for the highest pain experience (44%) was poorer than their ranking of the lowest pain experiences (55%). Conversely, in rheumatology specialists, the consensus for the highest pain experience (70%) was stronger than their ranking of the lowest pain experience (50%). Pain intensity was a high priority for pain specialists, but rheumatology specialists gave high priority to intensity and severity taken together. Pain spread was highly prioritized, with the number of pain locations (particular areas or joints) being a high priority for both groups; radiating pain was a high priority for pain specialists only. Pain emotion was challenging for both groups and was only perceived to be a high priority when specialists had additional confirmatory evidence (such as information about pain interference or clinical observations) to validate the pain emotion report. Pain qualities such as particular word descriptors, use of the color red, and fire symbols were seen to be high priority by both groups in interpretation of CYP pain reports. CONCLUSIONS: Pain interpretation is complex. Findings from this study of specialists' decision-making processes indicate which aspects of pain are prioritized and weighted more heavily than others by those interpreting mHealth data. Findings are useful for developing electronic graphical summaries which assist specialists in interpreting patient-reported mHealth pain data more efficiently in clinical and research settings.