Pediatric Rheumatology Online Journal → June 2003 → Systemic Onset Arthritis → Abstract #12

MEASURING DISEASE ACTIVITY IN SYSTEMIC-ONSET JUVENILE IDIOPATHIC ARTHRITIS (SOJIA)

A. V. Ramanan,¹ R. Schneider,¹ M. Batthish,¹ C. Achonu,¹ B. M. Feldman.¹

¹Division of Rheumatology, Hospital for Sick Children, Toronto, ON, Canada

Background: SoJIA is a serious chronic illness of childhood, accounting for a disproportionate amount of morbidity and mortality seen in JIA. There is currently no tool to measure disease activity in SoJIA. Measuring disease activity is made more difficult by the varied presentations of active SoJIA.
Aim: To develop a disease activity core outcome set for SoJIA by consensus using the Delphi process.
Methods: In the first phase of this project we sent questionnaires using the Dillman total design method to 187 Pediatric Rheumatologists worldwide. These rheumatologists represented the PRCSG, PRINTO, CPRA, BPRG and PRES organizations. A smaller number of allied health professionals from North America were also sampled from the ARHP. As part of this study 14 patients with SoJIA and their parents were selected by purposive sampling and interviewed. The subjects were asked to list all features of SoJIA that were indicative of active disease. In future iterations of the Delphi process the most important and useful disease activity measures will be determined by the respondents in order to develop a disease activity core outcome set.
Results: The overall response rate was 83% (155/187). The response rates of the different organisations were: PRCSG-78%(73/94), PRINTO-90%(36/40), CPRA-88%(23/26), BPRG-100%(8/8), PRES-75%(3/4), ARHP-80%(12/15). A total of 2671 items were generated. This number was reduced to 107 by grouping like items. The most frequent items elicited were fever, raised ESR, swollen joints, anaemia, raised platelet count, leukpcytosis, splenomegaly, raised CRP, hepatomegaly and rash.
Conclusions: The intial phase of our Delphi consensus process has had a high response rate from around the world. 107 distinct items that measure disease activity were generated. The second questionnaire will be used to develop a preliminary core outcome tool. This tool will then be validated in patients with an eventual consensus conference being planned.