ABSTRACT
OBJECTIVES: Adolescents with juvenile idiopathic arthritis have demonstrated substantial disagreement with their proxy's assessment of their disability, pain, and well-being. Our objective was to describe the clinical and psychological factors associated with discordance. STUDY DESIGN: This analysis included 204 proxy-adolescent (median age, 13 years) dyads that completed a Childhood Health Assessment Questionnaire for disability with 100-mm visual analogue scales for pain and well-being. Depressive symptoms in adolescents were measured by the Mood and Feelings Questionnaire and in proxies the General Health Questionnaire. Disagreement was assessed using Bland-Altman plots. Associations with discordance were identified using logistic regression analyses. RESULTS: There was higher agreement for disability (84%) than for pain (71%) and well-being (66%). Regression analyses found no association between age, sex, or disease duration and disagreement. However, relationships between disease activity and disagreement in outcomes were identified. Independent associations were found between increasing Mood and Feelings Questionnaire scores and disagreement in pain and well-being. CONCLUSIONS: Proxy and adolescent reports of pain and well-being are more likely to disagree in those with severe disease. Adolescents who report depressive symptoms are also more likely to disagree with their proxy. The reasons for these are multifactorial, and considerations of both reports are important when assessing outcomes in juvenile idiopathic arthritis.
Subject(s)
Arthritis, Juvenile/diagnosis , Disability Evaluation , Pain Measurement , Quality of Life , Surveys and Questionnaires , Adolescent , Arthralgia/physiopathology , Arthritis, Juvenile/psychology , Cohort Studies , Female , Humans , Logistic Models , Male , Personal Satisfaction , Proxy , Regression Analysis , Self-Assessment , Sensitivity and Specificity , Severity of Illness Index , United KingdomABSTRACT
OBJECTIVE: Inflammatory arthritis in childhood is variable in terms of both presentation and outcome. This analysis describes disease activity in children with juvenile idiopathic arthritis (JIA) during the first year following presentation to a paediatric rheumatologist and identifies predictors of moderate to severe disability [defined using a Childhood HAQ (CHAQ) score >or=0.75] at 1 year. METHODS: The Childhood Arthritis Prospective Study recruits children <16 years with new inflammatory arthritis persisting for >or=2 weeks from five UK tertiary referral centres. Demographics, disease features, joint count, CHAQ, physician's global assessment, parent's general evaluation of well-being (PGE), ESR and treatment, are collected at first presentation, 6 months and then yearly. Independent predictors of CHAQ >or=0.75 at 1 year in children diagnosed with JIA were identified using multivariable logistic regression models. RESULTS: Seven hundred and forty children with JIA were included; median age at presentation 7.6 years, 64% girls. During the first year, 85% received NSAIDs, 70% IA corticosteroids, 47% MTX and 27% systemic steroids (oral or i.v.). Median presenting CHAQ score was 0.63 and decreased to 0.25 at 1 year; 32% had CHAQ >or=0.75 at 1 year. The strongest predictor of CHAQ >or=0.75 at 1 year was CHAQ >or=0.75 at presentation (odds ratio 3.92; 95% CI 2.17, 7.09). Additional predictors included female gender and higher PGE. CONCLUSION: Although CHAQ score improved in most children, the strongest predictor of persistent disability at 1 year was moderate to severe disability at first presentation. Follow-up beyond 1 year will assess whether CHAQ at presentation will continue to be a predictor of future poor outcome.
