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- Open Access
15.3 Agreement between parent and adolescent assessment of disability, pain and well-being: results from the Childhood Arthritis Prospective Study (CAPS)
Pediatric Rheumatology volume 6, Article number: S34 (2008)
Limited data exist regarding agreement between parent and adolescent perceptions of disability, pain and general well being (WB), with some showing discordance in those with severe disease , and not others . This analysis studies the agreement between these measures in a cohort of adolescents with inflammatory arthritis (primarily JIA) and explores reasons for discordance.
Subjects were participants in CAPS, which systematically follows children with new inflammatory arthritis. This analysis is limited to 154 parent-adolescent dyads who respectively completed a CHAQ and adolescent CHAQ with 100 mm VAS for pain and WB. Agreement in scores was measured using Bland-Altman plots, with agreement defined as ± 0.25 units (CHAQ), ± 10 mm (Pain VAS) and ± 10 mm (WB VAS). Predictors of discordance were identified using logistic regression.
Median age was 13 years (range 11–19); disease duration 1 year (range 0–5). Median parent/child CHAQ, pain and WB scores were, respectively: 0.13/0.19, 11/10 mm, 7/9 mm. Agreement was high for all three measures: CHAQ 85%, pain 73%, WB 70%. Bland and Altman plots showed pain and WB agreement was strongest at the lower end of the scale. Similarly, higher adolescent CHAQ correlated with higher discordance in pain (OR 2.1 (95% CI 1.2, 3.5) and WB (OR 2.2 (95% CI 1.3, 3.7). There was no association between discordance, age, gender or disease duration.
A parent as proxy to measure disability (CHAQ) in adolescents shows validity across the spectrum of disease. However, disagreement exists in subjective measures of pain and well-being in those with more severe disease.
Garcia-Munitis P, Bandeira M, Pistorio A, Magni-Manzoni S, Ruperto N, Schivo A, Martini A, Ravelli A: Level of agreement between children, parents, and physicians in rating pain intensity in juvenile idiopathic arthritis. Arthritis Rheum. 55 (2): 177-183. 10.1002/art.21840.
Shaw KL, Southwood TR, McDonagh JE: Growing up and moving on in rheumatology: parents as proxies of adolescents with juvenile idiopathic arthritis. Arthritis Rheum. 55 (2): 189-198. 10.1002/art.21834.
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Lal, S., Adib, N., Wedderburn, L. et al. 15.3 Agreement between parent and adolescent assessment of disability, pain and well-being: results from the Childhood Arthritis Prospective Study (CAPS). Pediatr Rheumatol 6, S34 (2008). https://doi.org/10.1186/1546-0096-6-S1-S34
- Public Health
- Logistic Regression
- Severe Disease
- Disease Duration