16 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