Rheumatology

Rheumatology Advance Access originally published online on June 27, 2003

This Article Full Text FREE Full Text (PDF) All Versions of this Article: 42/12/1452    most recent keg403v1 Alert me when this article is cited Alert me if a correction is posted Services Email this article to a friend Similar articles in this journal Similar articles in ISI Web of Science Similar articles in PubMed Alert me to new issues of the journal Add to My Personal Archive Download to citation manager Search for citing articles in: ISI Web of Science (46) Request Permissions Disclaimer Google Scholar Articles by Ruperto, N. Articles by Martini, A. Search for Related Content PubMed PubMed Citation Articles by Ruperto, N. Articles by Martini, A. Social Bookmarking          What's this?

Rheumatology 2003; 42: 1452-1459
© 2003 British Society for Rheumatology

Paper

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

Nicolino Ruperto^1,a, Angelo Ravelli^1,a, Kevin J. Murray^2,a, Daniel J. Lovell^3,b, Boel Andersson-Gare^4,a, Brian M. Feldman^5,b, Stella Garay^6,a, Wietse Kuis^7,a, Claudia Machado^8,a, Lauren Pachman^9,b, Anne-Marie Prieur^10,a, Lisa G. Rider^11,b, Earl Silverman^5,b, Elena Tsitsami^12,a, Pat Woo^13,a, Edward H. Giannini^3,b and Alberto Martini^1,a for the Paediatric Rheumatology International Trials Organisation (PRINTO)^a and the Pediatric Rheumatology Collaborative Study Group (PRCSG)^b

¹IRCCS G. Gaslini, Pediatria II, Genova, Italy, ²Princess Margaret Hospital for Children, Perth, Australia, ³Cincinnati Childrens Hospital Medical Center, Cincinnati, OH, USA, ⁴Ryhov’s County Hospital, Department of Pediatrics, Jönköping, Sweden, ⁵Hospital for Sick Children, Rheumatology Department, Toronto, ON, Canada, ⁶Hospital Sor María Ludovica, Unidad de Reumatologia, Buenos Aires, Argentina, ⁷UMC Utrecht-Wilhelmina Kinderziekenhuis, Department of Pediatric Immunology and Rheumatology Utrecht, The Netherlands, ⁸Department of Paediatrics, Botucatu Medical School, São Paulo, Brazil, ⁹Children’s Memorial Hospital, Immunology/Rheumatology, Chicago, IL, USA, ¹⁰Hôpital Necker Enfants Malades, Unite’ d’Immunologie, Hématologie et Rhumatologie Pédiatrique, Paris, France, ¹¹Environmental Autoimmunity Group, National Institute of Environmental Health Sciences, National Institutes of Health, Department Health and Human Services, Bethesda, MD, USA, ¹²Department of Pediatrics, Aristotle University, Thessaloniki, Greece and ¹³Great Ormond Street Hospital for Sick Children, Rheumatology Department, London, UK.

Correspondence to: Nicolino Ruperto, Paediatric Rheumatology International Trials Organisation (PRINTO), IRCCS G. Gaslini, Pediatria II, Largo Gaslini, 5, 16147 Genova, Italy. E-mail: nicolaruperto{at}ospedale-gaslini.ge.it

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.

KEY WORDS: Consensus, Core set, Disease activity assessment, Disease damage assessment, Juvenile dermatomyositis, Juvenile systemic lupus erythematosus.

Notes

Additional PRINTO National Co-ordinators^a

members of the PRCSG^b

Additional PRINTO National Co-ordinators^a and members of the PRCSG^b who attended the consensus conference held in Pavia, Italy from March 31 to April 3, 2001: Sang Cheol Bae^a (Seoul, South Korea), Zsolt Balogh^a (Budapest, Hungary), Ruben Burgos-Vargas^a (Mexico City, Mexico), Carmen De Cunto^a (Buenos Aires, Argentina), Jaime De Inocencio^a (Madrid, Spain), Pavla Dolezalova^a (Prague, Czech Republic), Miroslav Harjacek^a (Zagreb, Croatia), Philip Hashkes^a (Safed, Israel), Michael Hofer^a (Lausanne, Switzerland), Visa Honkanen^a (Helsinki, Finland), Christian Huemer^a (Bregenz, Austria), Hans-Iko Huppertz^a (Bremen, Germany), Rik Joos^a (Gent, Belgium), Florence Kanakoudi^a (Thessaloniki, Greece), Vibke Lilleby^a (Oslo, Norway), Jose Melo-Gomes^a (Lisbon, Portugal), Dimitrina Mihaylova^a (Sofia, Bulgaria), Susan Nielsen^a (Copenhagen, Denmark), Irina Nikishina^a (Moscow, Russia), Huri Ozdogan^a (Istanbul, Turkey), Kharaman Pagava^a (Tbilisi, Georgia), Anne M. Reed^b (Rochester, MN, USA), Robert Rennebohm^b (Columbus, OH, USA), Anna Maria Romicka^a (Warsaw, Poland), Madeleine Rooney^a (Belfast, UK), Ingrida Rumba^a (Riga, Latvia), Gordana Susic^a (Belgrade, Yugoslavia), Richard Vesely^a (Kosice, Slovakia).

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]

Online ISSN 1462-0332 - Print ISSN 1462-0324

Copyright © 2009 British Society for Rheumatology

Oxford Journals Oxford University Press

• Site Map
• Privacy Policy
• Frequently Asked Questions

Other Oxford University Press sites: Oxford University Press Oxford Journals China Oxford Journals Japan American National Biography Booksellers' Information Service Children's Fiction and Poetry Children's Reference Corporate & Special Sales Dictionaries Dictionary of National Biography Digital Reference English Language Teaching Higher Education Textbooks Humanities International Education Unit Law Medicine Music Online Products Oxford English Dictionary Reference Rights and Permissions Science School Books Social Sciences Very Short Introductions World's Classics