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Objectives. The medical management of JIA has advanced significantly over the past 10 years. It is not known whether these changes have impacted on outcomes. The aim of this analysis was to identify and describe trends in referral times, treatment times and 1-year outcomes over a 10-year period among children with JIA enrolled in the Childhood Arthritis Prospective Study. Methods. The Childhood Arthritis Prospective Study is a prospective inception cohort of children with new-onset inflammatory arthritis. Analysis included all children recruited in 2001–11 with at least 1 year of follow-up, divided into four groups by year of diagnosis. Median referral time, baseline disease pattern (oligoarticular, polyarticular or systemic onset) and time to first definitive treatment were compared between groups. Where possible, clinical juvenile arthritis disease activity score (cJADAS) cut-offs were applied at 1 year. Results. One thousand and sixty-six children were included in the analysis. The median time from symptom onset and referral to first paediatric rheumatology appointment (22.7–24.7 and 3.4–4.7 weeks, respectively) did not vary significantly (∼20% seen within 10 weeks of onset and ∼50% within 4 weeks of referral). For oligoarticular and polyarticular disease, 33.8–47 and 25.4–34.9%, respectively, achieved inactive disease by 1 year, with ∼30% in high disease activity at 1 year. A positive trend towards earlier definitive treatment reached significance in oligoarticular and polyarticular pattern disease. Conclusion. Children with new-onset JIA have a persistent delay in access to paediatric rheumatology care, with one-third in high disease activity at 1 year and no significant improvement over the past 10 years. Contributing factors may include service pressures and poor awareness. Further research is necessary to gain a better understanding and improve important clinical outcomes.

ObjectivesPain is a very common symptom of juvenile idiopathic arthritis (JIA). Disease-activity alone cannot explain symptoms of pain in all children, suggesting other factors may be relevant. The objectives of this study were to describe the different patterns of pain experienced over time in children with JIA and to identify predictors of which children are likely to experience on-going pain.MethodsThis study used longitudinal-data from patients (aged 1-16 years) with new-onset JIA. Baseline and up to 5-year follow-up pain data from the Childhood Arthritis Prospective Study (CAPS) were used. A two-step approach was adopted. First, pain trajectories were modelled using a discrete mixture-model. Second, multinomial logistic regression was used to determine the association between variables and trajectories.ResultsData from 851 individuals were included (four years, median follow-up). A three-group trajectory model was identified: consistently-low pain (n=453), improved-pain (n=254) and consistently-high pain (n=144). Children with improved-pain or consistently-high pain differed on average at baseline from consistently-low pain. Older age at onset, poor function/disability and longer disease-duration at baseline were associated with consistently-high pain compared to consistently-low pain. Early increases in pain and poor function/disability were also associated with consistently-high pain compared to consistently-low pain. ConclusionsThis study has identified routinely collected clinical factors, which may indicate those individuals with JIA at risk of poor pain-outcomes earlier in disease. Identifying those at highest risk of poor pain-outcomes at disease onset may enable targeted pain management strategies to be implemented early in disease thus reducing the risk of poor pain-outcomes.Funding: ARUK Grant Reference number 20542

Objective: To develop response criteria for juvenile dermatomyositis (DM). Methods: We analyzed the performance of 312 definitions that used core set measures from either the International Myositis Assessment and Clinical Studies Group (IMACS) or the Paediatric Rheumatology International Trials Organisation (PRINTO) and were derived from natural history data and a conjoint analysis survey. They were further validated using data from the PRINTO trial of prednisone alone compared to prednisone with methotrexate or cyclosporine and the Rituximab in Myositis (RIM) trial. At a consensus conference, experts considered 14 top candidate criteria based on their performance characteristics and clinical face validity, using nominal group technique. Results: Consensus was reached for a conjoint analysis–based continuous model with a total improvement score of 0–100, using absolute percent change in core set measures of minimal (≥30), moderate (≥45), and major (≥70) improvement. The same criteria were chosen for adult DM/polymyositis, with differing thresholds for improvement. The sensitivity and specificity were 89% and 91–98% for minimal improvement, 92–94% and 94–99% for moderate improvement, and 91–98% and 85–86% for major improvement, respectively, in juvenile DM patient cohorts using the IMACS and PRINTO core set measures. These criteria were validated in the PRINTO trial for differentiating between treatment arms for minimal and moderate improvement (P = 0.009–0.057) and in the RIM trial for significantly differentiating the physician's rating for improvement (P < 0.006). Conclusion: The response criteria for juvenile DM consisted of a conjoint analysis–based model using a continuous improvement score based on absolute percent change in core set measures, with thresholds for minimal, moderate, and major improvement.

Objective. The objectives of this study were to examine the association between socio-economic status (SES) and delay to paediatric rheumatology clinic, disease severity and illness perception in patients with juvenile idiopathic arthritis (JIA) in England. Methods. Using the Index of Multiple Deprivation, 923 consecutive children from the Childhood Arthritis Prospective Study (CAPS) were assigned to the least deprived SES group (high-SES, 19.1%), middle-SES (44.5%) or low-SES group (36.4%). At baseline, disease activity was assessed and the health assessment questionnaire (CHAQ), the illness perception questionnaire (IPQ-R) and the Child Health Questionnaire (CHQ-PF50) completed. Linear, median regression analyses or zero-inflated negative binominal (ZINB) regression analyses were used. Results. Delay to first paediatric rheumatology consultation was not different between the three SES groups. Although disease activity scores assessed by the paediatric rheumatologist did not differ between the three SES groups, persons in the low SES-group recorded higher CHAQ-scores compared to the high SES-group (OR (95%CI) zero-inflated part ZINB 0.28 (0.14 to 0.55), β (95%CI) count part ZINB 0.26 (0.05 to 0.48)) and they reported more often that their children's school work or activities with friends had been limited. Furthermore, the low SES-group had a worse perception about the consequences of the disease and the effect of treatment than those in the high SES-group. Conclusion. Patients from lower SES background report more problems with daily activities and have a lower perception of the consequences of the disease than patients from higher SES background, warranting special attention from a multi disciplinary team. © 2014 American College of Rheumatology.

Clinical networks for paediatric and adolescent rheumatology are evolving, and their effect and role in the transition process between paediatric and adult services are unknown. We therefore explored the experiences of those involved to try and understand this further. Health professionals, young people with juvenile idiopathic arthritis and their families were recruited via five national health service paediatric and adolescent rheumatology specialist centres and networks across the UK. Seventy participants took part in focus groups and one-to-one interviews. Data was analysed using coding, memoing and mapping techniques to identify features of transitional services across the sector. Variation and inequities in transitional care exist. Although transition services in networks are evolving, development has lagged behind other areas with network establishment focusing more on access to paediatric rheumatology multidisciplinary teams. Challenges include workforce shortfalls, differences in service priorities, standards and healthcare infrastructures, and managing the legacy of historic encounters. Providing equitable high-quality clinically effective services for transition across the UK has a long way to go. There is a call from within the sector for more protected time, staff and resources to develop transition roles and services, as well as streamlining of local referral pathways between paediatric and adult healthcare services. In addition, there is a need to support professionals in developing their understanding of transitional care in clinical networks, particularly around service design, organisational change and the interpersonal skills required for collaborative working. Key messages • Transitional care in clinical networks requires collaborative working and an effective interface with paediatric and adult rheumatology. • Professional centrism and historic encounters may affect collaborative relationships within clinical networks. • Education programmes need to support the development of interpersonal skills and change management, to facilitate professionals in networks delivering transitional care.