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Rheumatology Advance Access published online on September 13, 2005
Rheumatology, doi:10.1093/rheumatology/kei095
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© The Author 2005. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: journals.permissions@oxfordjournals.org
Received May 17, 2005
Accepted August 1, 2005

Original Papers

Developing a disease activity tool for systemic-onset juvenile idiopathic arthritis by international consensus using the Delphi approach

A. V. Ramanan 1, R. Schneider 1, M. Batthish 1, C. Achonu 1, S. Ota 1, M. McLimont 1, N. L. Young 2, and B. M. Feldman 3*

1 Department of Pediatrics, Division of Rheumatology, Hospital for Sick Children, University of Toronto, Ontario, Canada
2 Department of Pediatrics, Hospital for Sick Children, University of Toronto, Ontario, Canada; Department of Health Policy Management and Evaluation, University of Toronto, Ontario, Canada; Graduate Department of Rehabilitation Science, University of Toronto, Ontario, Canada
3 Department of Pediatrics, Division of Rheumatology, Hospital for Sick Children, University of Toronto, Ontario, Canada; Department of Health Policy Management and Evaluation, University of Toronto, Ontario, Canada; Department of Public Health Sciences, University of Toronto, Toronto, Ontario, Canada

* To whom correspondence should be addressed.
B. M. Feldman, E-mail: Brian.Feldman{at}sickkids.ca


  Abstract

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.

Keywords: Juvenile idiopathic arthritis; Disease activity; Measurement.
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