Discordance between proxy-reported and observed assessment of functional ability of children with juvenile idiopathic arthritis

Objective. To determine the level of agreement between parents and clinicia ns in rating dysfunction in children with juvenile idiopathic arthritis (JI A). Methods. A parent of each patient completed the Italian version of the Chil dhood Health Assessment Questionnaire (CHAQ). Subsequently, an examiner ass essed. in a specially equipped room, the child's performance of tasks as de scribed by the CHAQ. Demographic and clinical variables were recorded for a ll patients. Results. Seventy consecutive JIA patients and their parents were included. The mean proxy-reported and observed CHAQ score was 0.64 +/- 0.53 and 0.47 +/- 0.62 respectively, the difference ranging from - 1.75 to 1.5. There wer e 30 cases (43%) of agreement (difference less than or equal to 0.25 CHAQ u nits) between the parent's and clinician's ratings, whereas in 40 cases (57 %) there was discordance (difference >0.25 CHAQ units). In 30 cases the par ent rated the child's functional ability as worse than that observed by the clinician (i.e. the parent underestimated the child's function), whereas i n 10 cases the parent rated the child's functional ability as better than t hat observed by the clinician (i.e. overestimated the child's function). Mu ltivariate regression analysis showed that children's functional ability wa s overestimated by parents with increasing erythrocyte sedimentation rate a nd global articular severity score and underestimated with increasing level of pain. Among the functional areas of the CHAQ, the level of agreement wa s poorest in the areas of eating and hygiene and was best for activities. Conclusions. Discordance between proxy-reported and observed functional abi lity was frequent in our patients with JIA. The children's functional abili ty was overestimated by parents as the severity of arthritis increased and underestimated as the level of pain increased.