Rheumatology Advance Access published online on June 27, 2003
Rheumatology, doi:10.1093/rheumatology/keg403
Rheumatology © British Society for Rheumatology 2003; all rights reserved
Original Papers
1 IRCCS G. Gaslini, Pediatria II, Genova, Italy
* Corresponding author. E-mail: nicolaruperto{at}ospedale-gaslini.ge.it.
Received 5 February 2003
; accepted 8 April 2003
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.
Key words: Consensus, Core set, Disease activity assessment, Disease damage assessment, Juvenile dermatomyositis, Juvenile systemic lupus erythematosus.
Preliminary core sets of measures for disease activity and damage assessment in juvenile systemic lupus erythematosus and juvenile dermatomyositis
2 Princess Margaret Hospital for Children, Perth, Australia
3 Cincinnati Childrens Hospital Medical Center, Cincinnati, OH, USA
4 Ryhov's County Hospital, Department of Pediatrics, Jönköping, Sweden
5 Hospital for Sick Children, Rheumatology Department, Toronto, ON, Canada
6 Hospital Sor María Ludovica, Unidad de Reumatologia, Buenos Aires, Argentina
7 UMC Utrecht-Wilhelmina Kinderziekenhuis, Department of Pediatric Immunology and Rheumatology Utrecht, The Netherlands
8 Department of Paediatrics, Botucatu Medical School, São Paulo, Brazil;
9 Children's Memorial Hospital, Immunology/Rheumatology, Chicago, IL, USA
10 Hôpital Necker Enfants Malades, Unite' d'Immunologie, Hématologie et Rhumatologie Pédiatrique, Paris, France
11 Environmental Autoimmunity Group, National Institute of Environmental Health Sciences, National Institutes of Health, Department Health and Human Services, Bethesda, MD, USA
12 Department of Pediatrics, Aristotle University, Thessaloniki, Greece
13 Great Ormond Street Hospital for Sick Children, Rheumatology Department, London, UK
CiteULike 
Connotea 
Del.icio.us What's this?
This article has been cited by other articles:
|
|
 |
|
  H. I. BRUNNER, G. C. HIGGINS, K. WIERS, S. K. LAPIDUS, J. C. OLSON, K. ONEL, M. PUNARO, J. YING, M. S. KLEIN-GITELMAN, and M. SEID Health-related Quality of Life and Its Relationship to Patient Disease Course in Childhood-onset Systemic Lupus Erythematosus J Rheumatol, July 1, 2009; 36(7): 1536 - 1545. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 M. O. Harris-Love, J. A. Shrader, D. Koziol, N. Pahlajani, M. Jain, M. Smith, H. L. Cintas, C. L. McGarvey, L. James-Newton, A. Pokrovnichka, et al. Distribution and severity of weakness among patients with polymyositis, dermatomyositis and juvenile dermatomyositis Rheumatology, February 1, 2009; 48(2): 134 - 139. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 M. M Ward Interpreting measurements of physical function in clinical trials Ann Rheum Dis, November 1, 2007; 66(suppl_3): iii32 - iii34. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
A. M. Huber, E. M. Dugan, P. A. Lachenbruch, B. M. Feldman, M. D. Perez, L. S. Zemel, C. B. Lindsley, R. M. Rennebohm, C. A. Wallace, M. H. Passo, et al. The Cutaneous Assessment Tool: development and reliability in juvenile idiopathic inflammatory myopathy Rheumatology, October 1, 2007; 46(10): 1606 - 1611. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 L.T. Hiraki, J. Hamilton, and E.D. Silverman Review: Measuring permanent damage in pediatric systemic lupus erythematosus Lupus, August 1, 2007; 16(8): 657 - 662. [Abstract] [PDF]
|
|
|
|
|
|
L. Moorthy, M. Peterson, M. Harrison, K. Onel, and T. Lehman Review: Quality of life in children with systemic lupus erythematosus: a review Lupus, August 1, 2007; 16(8): 663 - 669. [Abstract] [PDF]
|
|
|
|
|
|
N. Ruperto, A. Bazso, A. Ravelli, C. Malattia, G. Filocamo, A. Pistorio, A.L. Rodriguez Lozano, S. Viola, and A. Martini Review: The Paediatric Rheumatology International Trials Organization (PRINTO) Lupus, August 1, 2007; 16(8): 670 - 676. [Abstract] [PDF]
|
|
|
|
 |
|
 C. H. Wang, R. S. Finkel, E. S. Bertini, M. Schroth, A. Simonds, B. Wong, A. Aloysius, L. Morrison, M. Main, T. O. Crawford, et al. Consensus Statement for Standard of Care in Spinal Muscular Atrophy J Child Neurol, August 1, 2007; 22(8): 1027 - 1049. [Abstract] [PDF]
|
|
|
|
|
|
L. R. Wedderburn, P. Woo, and R. G. Hull Paediatric rheumatology: a bright future in the UK and Europe Rheumatology, April 1, 2005; 44(4): 423 - 425. [Full Text] [PDF]
|
|
|
|
|
|
F Perfumo and A Martini Lupus nephritis in children Lupus, January 1, 2005; 14(1): 83 - 88. [Abstract] [PDF]
|
|