10 research outputs found
Patient-reported wellbeing and clinical disease measures over time captured by multivariate trajectories of disease activity in individuals with juvenile idiopathic arthritis in the UK: a multicentre prospective longitudinal study
Background: Juvenile idiopathic arthritis (JIA) is a heterogeneous disease, the signs and symptoms of which can be
summarised with use of composite disease activity measures, including the clinical Juvenile Arthritis Disease Activity
Score (cJADAS). However, clusters of children and young people might experience different global patterns in their
signs and symptoms of disease, which might run in parallel or diverge over time. We aimed to identify such clusters in
the 3 years after a diagnosis of JIA. The identification of these clusters would allow for a greater understanding of
disease progression in JIA, including how physician-reported and patient-reported outcomes relate to each other over
the JIA disease course. /
Methods: In this multicentre prospective longitudinal study, we included children and young people recruited before
Jan 1, 2015, to the Childhood Arthritis Prospective Study (CAPS), a UK multicentre inception cohort. Participants
without a cJADAS score were excluded. To assess groups of children and young people with similar disease patterns in
active joint count, physician’s global assessment, and patient or parental global evaluation, we used latent profile analysis
at initial presentation to paediatric rheumatology and multivariate group-based trajectory models for the following
3 years. Optimal models were selected on the basis of a combination of model fit, clinical plausibility, and model parsimony. /
Finding: Between Jan 1, 2001, and Dec 31, 2014, 1423 children and young people with JIA were recruited to CAPS,
239 of whom were excluded, resulting in a final study population of 1184 children and young people. We identified
five clusters at baseline and six trajectory groups using longitudinal follow-up data. Disease course was not well
predicted from clusters at baseline; however, in both cross-sectional and longitudinal analyses, substantial proportions
of children and young people had high patient or parent global scores despite low or improving joint counts and
physician global scores. Participants in these groups were older, and a higher proportion of them had enthesitisrelated JIA and lower socioeconomic status, compared with those in other groups. /
Interpretation: Almost one in four children and young people with JIA in our study reported persistent, high patient
or parent global scores despite having low or improving active joint counts and physician’s global scores. Distinct
patient subgroups defined by disease manifestation or trajectories of progression could help to better personalise
health-care services and treatment plans for individuals with JIA. /
Funding: Medical Research Council, Versus Arthritis, Great Ormond Street Hospital Children’s Charity, Olivia’s Vision,
and National Institute for Health Researc
UNICORNS: Uveitis in childhood prospective national cohort study protocol [version 1; peer review: 1 approved, 1 approved with reservations]
Background: Childhood uveitis is a rare inflammatory eye disease which is typically chronic, relapsing-remitting in nature, with an uncertain aetiology (idiopathic). Visual loss occurs due to structural damage caused by uncontrolled inflammation. Understanding of the determinants of long term outcome is lacking, including the predictors of therapeutic response or how to define disease control.
Aims: To describe disease natural history and outcomes amongst a nationally representative group of children with non-infectious uveitis, describe the impact of disease course on quality of life for both child and family, and identify determinants of adverse visual, structural and developmental outcomes.
Methods: UNICORNS is a prospective longitudinal multicentre cohort study of children newly diagnosed with uveitis about whom a core minimum clinical dataset will be collected systematically. Participants and their families will also complete patient-reported outcome measures annually from recruitment. The association of patient (child- and treatment- dependent) characteristics with outcome will be investigated using logistic and ordinal regression models which incorporate adjustment for within-child correspondence between eyes for those with bilateral disease and repeated outcomes measurement.
Discussion: Through this population based, prospective longitudinal study of childhood uveitis, we will describe the characteristics of childhood onset disease. Early (1-2 years following diagnosis) outcomes will be described in the first instance, and through the creation of a national inception cohort, longer term studies will be enabled of outcome for affected children and families
Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience measures (PROMs/PREMs)
THE EMERGING EULAR NETWORK (EMEUNET) PEER-REVIEW MENTORING PROGRAM: TEN YEARS OF INITIATIVE.
The Emerging EULAR Network (EMEUNET) Peer Review Mentoring Program: Ten Years of Initiative
No evidence that genetic predictors of susceptibility predict changes in core outcomes in JIA
Rheumatic diseases in childhood and adolescence: importance of early multi-professional care
EULAR recommendations for the management of psoriatic arthritis with pharmacological therapies: 2023 update.
New modes of action and more data on the efficacy and safety of existing drugs in psoriatic arthritis (PsA) required an update of the EULAR 2019 recommendations for the pharmacological treatment of PsA. Following EULAR standardised operating procedures, the process included a systematic literature review and a consensus meeting of 36 international experts in April 2023. Levels of evidence and grades of recommendations were determined. The updated recommendations comprise 7 overarching principles and 11 recommendations, and provide a treatment strategy for pharmacological therapies. Non-steroidal anti-inflammatory drugs should be used in monotherapy only for mild PsA and in the short term; oral glucocorticoids are not recommended. In patients with peripheral arthritis, rapid initiation of conventional synthetic disease-modifying antirheumatic drugs is recommended and methotrexate preferred. If the treatment target is not achieved with this strategy, a biological disease-modifying antirheumatic drug (bDMARD) should be initiated, without preference among modes of action. Relevant skin psoriasis should orient towards bDMARDs targeting interleukin (IL)-23p40, IL-23p19, IL-17A and IL-17A/F inhibitors. In case of predominant axial or entheseal disease, an algorithm is also proposed. Use of Janus kinase inhibitors is proposed primarily after bDMARD failure, taking relevant risk factors into account, or in case bDMARDs are not an appropriate choice. Inflammatory bowel disease and uveitis, if present, should influence drug choices, with monoclonal tumour necrosis factor inhibitors proposed. Drug switches and tapering in sustained remission are also addressed. These updated recommendations integrate all currently available drugs in a practical and progressive approach, which will be helpful in the pharmacological management of PsA