Agreement between physicians and parents in rating functional ability of children with juvenile idiopathic arthritis

Elena Palmisani,Stefania Viola,Antonella Buoncompagni,Angela Pistorio,Clara Malattia,Nicoletta Solari,Angelo Ravelli,Anna Loy,Alberto Martini,Nicolino Ruperto

doi:10.1186/1546-0096-5-23

Abstract

ObjectiveTo investigate concordance between physicians and parents in rating the degree of functional ability of children with juvenile idiopathic arthritis (JIA).MethodsThe attending physician and a parent were asked to rate independently the level of physical functioning of 155 patients with disease duration ≥ 5 years on a 6-point scale ranging from 1 = no disability (i.e. the child can do without difficulty all activities that children of his/her age can do) to 6 = severe disability (i.e. all activities are difficult for the child). At study visit, measures of JIA activity and damage were assessed. Agreement was evaluated with weighted kappa (<0.40 = poor agreement; 0.41–0.60 = moderate agreement; 0.61–0.80 = substantial agreement; >0.80 excellent agreement). Physician/parent evaluations were divided in 3 groups: 1) concordance; 2) parent over-rating = parent assessment over-rated relative to physician assessment; 3) physician over-rating = physician assessment over-rated relative to parent assessment. Factors affecting concordance/discordance were evaluated by means of Kruskal-Wallis or Chi-square/Fisher exact test.ResultsConcordance, parent over-rating and physician over-rating were observed in 107 (69%), 29 (18.7%) and 19 (12.3%) evaluations, respectively. Kappa value was 0.69. Parent over-rating was associated with greater intensity of pain (p = 0.01) and higher Childhood Health Assessment Questionnaire (C-HAQ) score (p = 0.004), whereas physician over-rating was associated with more severe joint disease (p = 0.04 to <0.001), higher C-reactive protein (p = 0.03) higher frequency of Steinbrocker functional class = II (p < 0.001), and greater articular damage, as measured with the Juvenile Arthritis Damage Index (p < 0.001).ConclusionPhysicians and parents revealed fair concordance in rating functional ability of children with JIA. Parent over-rating was associated with greater child's pain and worse C-HAQ score, whereas physician over-rating was associated with greater severity of joint inflammation and damage.

Highlights

The assessment of functional ability is of primary importance in the clinical evaluation of children with juvenile idiopathic arthritis (JIA)
Patient selection All consecutive patients seen at the study unit between September, 2002 and June, 2004 who had JIA by the International League of Associations for Rheumatology (ILAR) criteria [12] and had at least 5 years of disease duration were included in the study
The question stem, "Considering the child's ability to do the activities of daily life, overall which describes he/she best?", prompted the respondent to choose from 6 response categories: 1 = no disability; 2 = mild disability; 3 = mild-to-moderate disability; 4 = moderate disability; 5 = moderate-to-severe disability; 6 = severe disability

Summary

Introduction

The assessment of functional ability is of primary importance in the clinical evaluation of children with juvenile idiopathic arthritis (JIA). Physical disability is a central domain of disease outcome as prevention of loss of function is one of the main aims of JIA treatment. Starting in the 90s, parent-centered measures, such as parent-proxy report of physical functioning with questionnaires [2,3,4,5,6,7,8], achieved increasing popularity. Most of the recent longterm outcome studies in JIA (reviewed in 9 and 10) have incorporated both physician-centered and parent-centered functional ability measures. We previously found that a sizable proportion of parents either under or overestimate the degree of their children's functional ability, as measured with the C-HAQ, when compared with the objective physician's assessment [11]

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Results

Conclusion