title: Developing a disease activity tool for systemic-onset juvenile idiopathic arthritis by international consensus using the Delphi approach.
abstract: OBJECTIVE
  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.
authors.affiliation: Department of Pediatrics, Division of Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada.
authors.forename: A V
authors.initials: AV
authors.lastname: Ramanan
authors.forename: R
authors.initials: R
authors.lastname: Schneider
authors.forename: M
authors.initials: M
authors.lastname: Batthish
authors.forename: C
authors.initials: C
authors.lastname: Achonu
authors.forename: S
authors.initials: S
authors.lastname: Ota
authors.forename: M
authors.initials: M
authors.lastname: McLimont
authors.forename: N L
authors.initials: NL
authors.lastname: Young
authors.forename: B M
authors.initials: BM
authors.lastname: Feldman
mesh_terms: D000465:Algorithms; D001171:Arthritis, Juvenile / Q000150:complications / Q000175:diagnosis*; D002648:Child; D003697:Delphi Technique; D006306:Health Surveys; D006801:Humans; D007391:International Cooperation; D012720:Severity of Illness Index