Assessment of disease activity by patients with juvenile idiopathic arthritis and the parents compared to the assessment by pediatric rheumatologists

Background: Self assessment of arthritis is important for recognition of disease activity and early initiation of therapy. Proper interpretation of physical symptoms is necessary for this. The purpose was to investigate the assessment by patients and parents of disease activity in juvenile idiopathic arthritis (JIA) and to compare their assessments to rheumatologists' assessments. Methods: Patients and parents assessed 69 joints on a paper homunculus and marked each joint with a different color according to presumed presence of disease: active disease (AD), doubt, and non-active disease (NAD). Their assessments were compared to the rheumatologists' assessments. If patients and/or parents marked an inflamed joint, it counted as AD. Pain, functional impairment, and disease duration were analyzed to differentiate more precise between true and false positive and true and false negative assessments. Results: We collected assessments of 113 patients and/or parents. AD was assessed 54 times, 33 of which were true positives. NAD was assessed 23 times, 22 of which were true negatives. Doubt was expressed 36 times, 9 of which were assessed by the rheumatologist as AD. Sensitivity and specificity of AD was 0.77 and 0.31. Pain and functional impairment scored highest in AD, intermediate in doubt, and lowest in NAD. Conclusion: Patients and/or parents seldom missed arthritis but frequently overestimated disease activity. Pain, functional impairment, disease duration, gender, and age did not differentiate between true and false positives for. Patients perceived JIA as active if they experienced pain and functional impairment. To reduce overestimation of the presence of AD we need to improve their understanding of disease activity by teaching them to distinguish between primary symptoms of JIA and symptoms like pain and functional impairment