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.

"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.

Addressing education and employment outcomes in the provision of healthcare for young people with physical long-term conditions: A systematic review and mixed methods synthesis.

Objective: To identify and synthesise the experiences and benefits of addressing vocational issues in the provision of healthcare for young people (YP) with long-term conditions (LTCs).

Methods: We searched 10 bibliographic databases. Restrictions were applied on publication date (1996-2020) and language (English).

Growing up with chronic pain: a systematic review of the evidence in transitional care for young people with chronic pain.

Objective: Paediatric chronic pain presents a significant individual and societal burden, with an estimated prevalence of 11-38%. A large proportion of adolescents with chronic pain will have unresolved pain that continues into adulthood and thus requires transitional care. The aim of this review was to investigate the current evidence for the core components of effective transitional care interventions designed for young people with chronic pain.

'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.

Continuing specialist care into adulthood in young people with juvenile idiopathic arthritis: a retrospective cohort study using electronic health records in England.

Objectives: This study aimed to measure (1) the proportion of children who continue to receive specialist care (rheumatology/ophthalmology) as adults, (2) the characteristics associated with continuing specialist care, and (3) the frequency of specialist care appointments in both paediatric and adult services.

Methods: A retrospective cohort of young people with JIA was identified from UK primary care electronic health records (Clinical Practice Research Datalink) between 1 April 2003 and 31 December 2018. To be included in the study, cases needed to have at least 1 year of registration at their general practice beyond age 18 and linkage to Hospital Episodes Statistics data for secondary care information.

The Your Rheum story: involvement of young people in rheumatology research.

Until recently, young people too often fell into the gaps between services due to restrictive age criteria. Furthermore, their voice was too infrequently heard or was represented by proxies in the form of their caregivers or by adults recalling their youth. The lack of young person involvement in adolescent health research including the arena of paediatric and adolescent chronic disease has been highlighted in current literature.

Quality improvement in juvenile idiopathic arthritis: a mixed-methods implementation pilot of the CAPTURE-JIA dataset.

Background: A significant proportion of children and young people with juvenile idiopathic arthritis (JIA) do not achieve inactive disease during the first two years following diagnosis. Refinements to clinical care pathways have the potential to improve clinical outcomes but a lack of consistent and contemporaneous clinical data presently precludes standard setting and implementation of meaningful quality improvement programmes. This study was the first to pilot clinical data collection and analysis using the CAPTURE-JIA dataset, and to explore patient and clinician-reported feasibility and acceptability data.

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 Role of Age in Delays to Rheumatological Care in Juvenile Idiopathic Arthritis.

Objective: To investigate the relationship between age and symptom duration at initial presentation to pediatric rheumatology for juvenile idiopathic arthritis (JIA).

Methods: In children and young people (CYP) enrolled in the Childhood Arthritis Prospective Study prior to March 2018, an association between age at presentation (< 5, 5-11, and > 11 yrs) and symptom duration was tested by multivariable linear regression.

Results: In 1577 CYP, 5- to 11-year-olds took 3.

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.

Incidence and prevalence of juvenile idiopathic arthritis in the United Kingdom, 2000-2018: results from the Clinical Practice Research Datalink.

Objective: The incidence and prevalence of JIA was last estimated in the UK in 1994. Since then the disease has been reclassified, the specialty of paediatric rheumatology has evolved and there has been a significant shift in disease management with new advanced therapies. This study aimed to provide up-to-date national estimates of this disease.

Developmentally appropriate transitional care during the Covid-19 pandemic for young people with juvenile-onset rheumatic and musculoskeletal diseases: the rationale for a position statement.

Background: The importance of developmentally appropriate transitional care in young people with juvenile-onset rheumatic and musculoskeletal disease is well recognised. The Paediatric Rheumatology European Society (PReS) / European League Against Rheumatism (EULAR) Taskforce has developed international recommendations and standards for transitional care and a growing evidence base supports the positive benefits of such care. However, there is also evidence that universal implementation has yet to be realised.

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.

Young Minds: Mental Health and Transitional Care in Adolescent and Young Adult Rheumatology.

Consideration of the mental health and emotional wellbeing is an important component of health care for all young people, irrespective of setting. Mental health disorders are common during adolescence and young adulthood and young people with rheumatic musculoskeletal diseases (RMD) are not exempt. For such young people, risks of poor outcomes are related to both mental health as well as their RMD.

Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience measures (PROMs/PREMs).

Background: Measuring the outcomes that matter to children and young people (CYP) with juvenile idiopathic arthritis (JIA), is a necessary precursor to patient-centred improvements in quality of clinical care. We present a two-centre validation of novel JIA patient-reported outcome and experience measures (PROM and PREM) developed as part of the CAPTURE-JIA project.

Methods: CYP with JIA were recruited from paediatric rheumatology clinics, completing the CAPTURE-JIA PROM and PREM, CHAQ and CHU 9D.

Presentation, Treatment Response and Short-Term Outcomes in Paediatric Multisystem Inflammatory Syndrome Temporally Associated with SARS-CoV-2 (PIMS-TS).

The novel Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) is the pathogen responsible for Coronavirus Disease 2019 (COVID-19). Whilst most children and young people develop mild symptoms, recent reports suggest a novel paediatric inflammatory multisystem syndrome temporally associated with SARS-CoV-2 (PIMS-TS). Case definition and classification are preliminary, treatment is empiric and disease-associated outcomes are unclear.

Adolescents' experiences of fluctuating pain in musculoskeletal disorders: a qualitative systematic review and thematic synthesis.

Background: Adolescents with chronic musculoskeletal pain experience daily fluctuations in pain. Although not all fluctuations are bothersome, pain flares are a distinct type of symptom fluctuation with greater impact. Since literature on the experience of pain flares is non-existent, the aim of this review was to (i) synthesise the qualitative literature on adolescents' experiences of fluctuating pain in musculoskeletal disorders in order to (ii) identify knowledge gaps to inform future research on pain flares.

Characterizing pain flares in adolescent inflammatory and non-inflammatory musculoskeletal disorders: A qualitative study using an interpretative phenomenological approach.

Background: Adolescents with musculoskeletal disorders experience acute exacerbations in pain, colloquially called "pain flares" in adult literature. This study aimed to explore adolescents' lived experience of pain flares, including what pain flares are, why they occur, how they are managed and what lasting effects they have on adolescents.

Methods: A sample of 10 adolescents diagnosed with juvenile idiopathic arthritis or chronic idiopathic pain syndrome were recruited from a tertiary hospital in the UK.

Common Functional Ability Score for Young People With Juvenile Idiopathic Arthritis.

Objective: As young people enter adulthood, the interchangeable use of child and adult outcome measures may inaccurately capture changes over time. This study aimed to use item response theory (IRT) to model a continuous score for functional ability that can be used no matter which questionnaire is completed.

Methods: Adolescents (ages 11-17 years) in the UK Childhood Arthritis Prospective Study (CAPS) self-completed an adolescent Childhood Health Assessment Questionnaire (CHAQ) and a Health Assessment Questionnaire (HAQ).

Shifting the mindset-adolescent and young adult rheumatology in transition.

Almost 30 years have passed since publication of the first reports acknowledging the crucial importance of transitional care for adolescents and young adults with chronic disease, but universal implementation has yet to be achieved. Progress has undoubtedly been made, with increasing evidence for best practice in transitional care. However, translation of research and guidance into clinical practice continues to be challenging.

Delivering developmentally appropriate health care: Roles for psychologists as members of the multi-disciplinary health care team.

There is increasing global attention on the health and wellbeing needs of young people. Preventive and proactive approaches will likely lead to the clearest dividends for young people, their own children and wider society. A brief overview of the international context for young people's health care is given.

Facilitating transition of young people with long-term health conditions from children's to adults' healthcare services - implications of a 5-year research programme.

Background: During transition from children's to adults' healthcare, young adults with long-term conditions may show delays in psychosocial development compared to their peers without long-term conditions, and deterioration of their conditions' medical control.

Methods: This paper integrates the findings, already published in 10 separate papers, of a 5-year transition research programme.

Implications: There is an important role for funders (commissioners) of adults' services to fund transitional healthcare, in addition to funders of children's services who currently take responsibility.

Can we normalise developmentally appropriate health care for young people in UK hospital settings? An ethnographic study.

Objective: The WHO has argued that adolescent-responsive health systems are required. Developmentally appropriate healthcare (DAH) for young people is one approach that could underpin this move. The aim of this study was to explore the potential for DAH to become normalised, to become a routine, taken-for-granted, element of clinical practice.