Objective
To provide preliminary evidence of validity of the JAMAR in a large sample of JIA patients.
Methods
The JAMAR includes: Juvenile Arthritis Functionality Scale (JAFS) (0 = normal; 30 = worst), Pediatric Rheumatology Quality of Life (PRQL) questionnaire (0 = best; 30 = worst); visual analogue scales (0 = best; 10 = worst) for parent/patient rating of well-being (WB), pain (P), disease activity (DA); parent/patient assessment of morning stiffness, disease status, satisfaction about disease outcome.
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Results
The JAMAR was completed by 403 parents in 696 visits between March 2007 and February 2008. All completers reported that JAMAR was easy to understand and fill. Completion time was < 10 minutes. Results of quantitative JAMAR assessments are shown in the table 1 together with assessments made by attending physician.
Table 1
Percentage of parents reporting morning stiffness, remission, continued activity, flare, and satisfaction about outcome was 34.3, 47.9, 29.5, 22.6, and 72.1, respectively.
Parent WB | Parent DA | Parent P | JAFS | PRQL | MD global | No. swollen joints | No. tender joints | No. restricted joints | No. active joints | |
|---|---|---|---|---|---|---|---|---|---|---|
Mean | 2.3 | 2.4 | 2.1 | 1.5 | 3.9 | 2.3 | 1.8 | 2.1 | 2.1 | 2.4 |
Median | 1 | 1 | 0.5 | 0 | 3 | 0.5 | 1 | 0 | 0 | 1 |
Minimum | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 |
Maximum | 10 | 10 | 10 | 26 | 23 | 10 | 35 | 49 | 46 | 49 |
Conclusion
The JAMAR proved to be feasible and to have good face and content validity. Parents and physicians revealed fair concordance in assessing overall disease activity. Around half and 2/3 of patients, respectively, were judged to be in remission or in satisfactory state by parents.
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