In pediatric studies of chronic disease impact and health status, it is controversial whether to gather information from the child or the parent. Therefore, we examined whether children with JRA and their parents agreed on the degree of pain and functional disability due to JRA. We compared which areas of disease impact were most critical to the children and to their parents. Subjects were 60 children ages 8-17 (44F;16M) with definite JRA and their parents. The children were followed in the pediatric rheumatology clinic with disease duration >6 months. The child and parent were each given a pain visual analog scale (VAS) and the Functional Disability Inventory (FDI). Each was asked to answer an open-ended question asking What are the 3 most difficult things for you (your child) about having JRA? Each answer to the open question was assigned to one of 5 areas of disease impact.RESULTS: Pain rating on the VAS was not significantly different between children [mean 2.25] and parents[mean 2.79]. There was a trend for parents to rate their child as more disabled on the FDI [child mean 7.40; parent mean 8.70; p=0.06]. Striking differences were found between children and parents in the areas of greatest disease impact in response to the open question. Children with JRA most frequently report difficulties in participation in functional activities, whereas parents report impairment in their child's psychological or social functioning. These data indicate that the impact of JRA is perceived differently by the child and the parent, especially in the areas of functional activities and psychosocial adjustment. Therefore, accurate assessment of health-related quality of life in children with JRA may require collecting data from both children and their parents.Table

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