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

Details

Serval ID
serval:BIB_29692
Type
Article: article from journal or magazin.
Collection
Publications
Institution
Title
Preliminary core sets of measures for disease activity and damage assessment in juvenile systemic lupus erythematosus and juvenile dermatomyositis.
Journal
Rheumatology
Author(s)
Ruperto N., Ravelli A., Murray K.J., Lovell D.J., Andersson-Gare B., Feldman B.M., Garay S., Kuis W., Machado C., Pachman L., Prieur A.M., Rider L.G., Silverman E., Tsitsami E., Woo P., Giannini E.H., Martini A.
Working group(s)
Paediatric Rheumatology International Trials Organization (PRINTO), Pediatric Rheumatology Collaborative Study Group (PRCSG)
ISSN
1462-0324 (Print)
ISSN-L
1462-0324
Publication state
Published
Issued date
2003
Volume
42
Number
12
Pages
1452-1459
Language
english
Notes
Publication types: Consensus Development Conference ; Journal Article ; Research Support, Non-U.S. Gov't ; Research Support, U.S. Gov't, P.H.S. ; Review ; Validation Studies
Publication Status: ppublish
Abstract
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.
Keywords
Child, Clinical Trials as Topic/methods, Delphi Technique, Dermatomyositis/diagnosis, Dermatomyositis/therapy, Humans, Lupus Erythematosus, Systemic/diagnosis, Lupus Erythematosus, Systemic/therapy, Prospective Studies, Questionnaires, Severity of Illness Index, Treatment Outcome
Pubmed
Web of science
Open Access
Yes
Create date
19/11/2007 12:27
Last modification date
20/08/2019 13:09
Usage data