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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. All specialist care outpatient visits were identified from Hospital Episodes Statistics outpatient data. Results There were 666 young people included in the study. Of these, 427 (64%) received specialist care beyond age 18, 90 (13%) had their last recorded contact at 16–17 years and 149 (22%) did not continue after 16 years. Older age at diagnosis, female gender, less deprivation and a childhood diagnosis of uveitis were associated with continuing specialist care beyond age 18. Of those continuing beyond 18, 35% (n  = 153) were subsequently discharged by the study end date. Of all those discharged, 32% had a missed appointment recorded after the last attended visit, suggesting failure to attend. Conclusions Two-thirds of young people with JIA continue to receive specialist care beyond age 18. This is useful information for children and young people with JIA and their families planning for their future, and for clinicians planning health-care services. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]