Rheumatology Advance Access originally published online on September 13, 2005
Rheumatology 2005 44(12):1574-1578; doi:10.1093/rheumatology/kei095
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Developing a disease activity tool for systemic-onset juvenile idiopathic arthritis by international consensus using the Delphi approach
1 Department of Pediatrics, Division of Rheumatology, Hospital for Sick Children, 2 Department of Pediatrics, Hospital for Sick Children, 3 Department of Health Policy Management and Evaluation, University of Toronto, 4 Graduate Department of Rehabilitation Science, University of Toronto and 5 Department of Public Health Sciences, University of Toronto, Toronto, Ontario, Canada.
Correspondence to: B. M. Feldman, Division of Rheumatology, The Hospital for Sick Children, 555 University Avenue, Toronto, ON M5G 1X8, Canada. E-mail: Brian.Feldman{at}sickkids.ca
Objectives. The systemic form of juvenile idiopathic arthritis may present with many diverse symptoms, signs and laboratory abnormalities. Our aim was to elicit and pool items useful for developing a consensus disease activity measure for systemic arthritis in children, using an international pool of respondents.
Methods. We used a Delphi survey process in two steps. First we surveyed 187 paediatric rheumatologists and allied health professionals. We elicited 2607 items that, when combined with previously elicited items from parents/patients, could be pooled into 107 independent items. We then surveyed the paediatric rheumatologists to determine the frequency and importance of the 107 items.
Results. Our response rate was 83% to both surveys. We identified 29 items as being the most important and most frequently seen indicators of active disease. The most highly rated of these items were: presence of fever, presence of rash, elevated ESR, elevated CRP, requirement for increasing medications, abnormal physician global evaluation and presence of joints with active arthritis.
Conclusions. Twenty-nine items are thought by medical practitioners to be most relevant in determining disease activity in systemic arthritis. As a next step, the measurement properties of these items will be tested to help develop a disease activity tool.
KEY WORDS: Juvenile idiopathic arthritis, Disease activity, Measurement