Measuring Clinical Response and Remission in Juvenile Idiopathic Arthritis

Table 1.

Characteristics of Disease Outcome Measures

Table 2.

Pediatric Core Set Components

Table 3.

Disease Activity Score (DAS) Components and Equations for the DAS and DAS28

Table 4.

Clinical Remission in Juvenile Idiopathic Arthritis

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Measures of Health-related Quality of Life and Functional Ability

A number of indices exist for the measurement of health-related quality of life and disability in children with JIA. The most commonly used are the PedsQL and CHAQ.

The PedsQL has been validated in large populations of healthy children and in children with chronic illnesses and has been found to be a reliable and sensitive measure of health-related quality of life.^[34] Furthermore, the PedsQL 4.0 Generic Core Scales and the PedsQL 3.0 Rheumatology Module have been validated in a population of children with rheumatologic illnesses, approximately one-third of whom were diagnosed with JIA.^[35] The CHAQ was developed specifically as an outcome measure for children with juvenile rheumatoid arthritis and is a commonly used measure of disability in this population.^[36] The use of these measures and additional instruments, including the Juvenile Arthritis Function Assessment Report (JAFAR) and the Juvenile Arthritis Quality of Life Questionnaire (JAQQ), was recently reviewed.^[37]

Two recent reports from the Pediatric Rheumatology International Trials Organization (PRINTO) multinational cohort assessed both patient and proxy reports of health-related quality of life measures. Both surveys used the Child Health Questionnaire (CHQ), a generic measure of quality of life, as the primary outcome measure. The first survey enrolled a total of 6639 children from 32 countries, 3324 children with JIA and 3315 of their healthy peers, between the years 1998 and 2000.^[38*] This survey found that children with JIA had lower CHQ scores in both the physical and psychosocial domains than did the healthy controls, with the physical domain tending to show larger effects, particularly within the areas of global health, physical function, and bodily pain. Overall, children with oligoarticular disease had better quality of life scores than children with the other JIA subtypes. The second investigation reported health-related quality of life outcomes from 3167 children with JIA in Western Europe, Eastern Europe, and Latin America and found similar results, with the additional finding that there was no significant variation in these findings between the 3 geographic regions.^[39]

These cross-sectional reports, with large numbers of patients encompassing multiple geographic regions, provide a snapshot of health-related quality of life in children with JIA and suggest areas on which to focus interventions. Longitudinal follow-up and comparison of these cohorts to more recent cohorts receiving biologic agents will provide additional information regarding the status of health-related quality of life in children with JIA.