Preliminary core sets of measures for disease activity and damage assessment in juvenile systemic lupus erythematosus and juvenile dermatomyositis.

Published

Journal Article (Review)

OBJECTIVE: To identify preliminary core sets of outcome variables for disease activity and damage assessment in juvenile systemic lupus erythematosus (JSLE) and juvenile dermatomyositis (JDM). METHODS: Two questionnaire surveys were mailed to 267 physicians from 46 different countries asking each member to select and rank the response variables used when assessing clinical response in patients with JSLE or JDM. Next, 40 paediatric rheumatologists from 34 countries met and, using the nominal group technique, selected the domains to be included in the disease activity and damage core sets for JSLE and JDM. RESULTS: A total of 41 response variables for JSLE and 37 response variables for JDM were selected and ranked through the questionnaire surveys. In the consensus conference, domains selected for both JSLE and JDM activity or damage core sets included the physician and parent/patient subjective assessments and a global score tool. Domains specific for JSLE activity were the immunological tests and the kidney function parameters. Concerning JDM, functional ability and muscle strength assessments were indicated for both activity and damage core sets, whereas serum muscle enzymes were included only in the activity core set. A specific paediatric domain called 'growth and development' was introduced in the disease damage core set for both diseases and the evaluation of health-related quality of life was advised in order to capture the influence of the disease on the patient lifestyle. CONCLUSIONS: We developed preliminary core sets of measures for disease activity and damage assessment in JSLE and JDM. The prospective validation of the core sets is in progress.

Full Text

Duke Authors

Cited Authors

  • Ruperto, N; Ravelli, A; Murray, KJ; Lovell, DJ; Andersson-Gare, B; Feldman, BM; Garay, S; Kuis, W; Machado, C; Pachman, L; Prieur, A-M; Rider, LG; Silverman, E; Tsitsami, E; Woo, P; Giannini, EH; Martini, A; Paediatric Rheumatology International Trials Organization (PRINTO), ; Pediatric Rheumatology Collaborative Study Group (PRCSG),

Published Date

  • December 2003

Published In

Volume / Issue

  • 42 / 12

Start / End Page

  • 1452 - 1459

PubMed ID

  • 12832713

Pubmed Central ID

  • 12832713

International Standard Serial Number (ISSN)

  • 1462-0324

Digital Object Identifier (DOI)

  • 10.1093/rheumatology/keg403

Language

  • eng

Conference Location

  • England