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Rheumatology Advance Access originally published online on July 28, 2006
Rheumatology 2007 46(2):314-320; doi:10.1093/rheumatology/kel218
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© The Author 2006. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: journals.permissions@oxfordjournals.org

Health-related quality of life of patients with juvenile idiopathic arthritis coming from 3 different geographic areas. The PRINTO multinational quality of life cohort study

R. Gutiérrez-Suárez1, A. Pistorio2, A. Cespedes Cruz1, X. Norambuena1, B. Flato3, I. Rumba4, M. Harjacek5, S. Nielsen6, G. Susic7, D. Mihaylova8, C. Huemer9, J. Melo-Gomes10, B. Andersson-Gare11, Z. Balogh12, C. De Cunto13, R. Vesely14, K. Pagava15, A. M. Romicka16, R. Burgos-Vargas17, A. Martini18, N. Ruperto1 for the Pediatric Rheumatology International Trials Organisation (PRINTO).

1IRCCS G Gaslini, Pediatria II, Reumatologia, PRINTO, Genova, Italy, 2IRCCS G Gaslini, Servizio di Epidemiologia e Biostatistica, Genova, Italy, 3Rikshospitalet University Hospital, Department of rheumatology, Oslo, Norway, 4University of Latria, Pediatric Rheumatology, Riga, Latvia, 5Children's Hospital Zagreb, Department of Pediatrics, Immunology/Rheumatology, Zagreb, Croatia, 6Juliane Marie Centret, Rigshospitalet, Pediatrisk klinik II, Afsnit 4064, København, Denmark, 7Institute of Rheumatology, Department of Pediatric Rheumatology, Belgrade, Serbia Montenegro, 8University Children Hospital, Department of Paediatric Rheumatology, Sofia, Bulgaria, 9Landeskrankenhaus Bregenz, Bregenz, Austria, 10Instituto Portugues de Reumatologia, Pediatric Reumatology, Lisbon, Portugal, 11Ryhov's County Hospital, Department of Child Public Health, Qulturum, Jonkoping, Sweden, 12National Institute of Rheumatology and Physiotherapy, III General and Pediatric Rheumatol Dpt, Budapest, Hungary, 13Hospital Italiano de Buenos Aires, Pediatrics, Rheumatology and Immunology Section, Buenos Aires, Argentina, 14Detska Fakultna Nemocnica, 1st Pediatric Dept, Kosice, Slovakia, 15Department of Pediatrics and Adolescent Medicine, Tbilisi State Medical University, Tbilisi Hospital #1 and Georgian Scientific-Practical Rheumatology Center, Tbilisi, Georgia, 16Institute of Rheumatology, Paediatric Clinic, Warsaw, Poland, 17Rheumatology Department and Faculty of Medicine, Hospital General de México and Universidad Nacional Autónoma de México, México City, México and 18IRCCS G. Gaslini, Pediatria II, Reumatologia and Dipartimento di Pediatria, Università degli Studi, Genova, Italy

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


   Abstract

Objectives. To compare health-related quality of life (HRQL) and to identify clinical determinants for poor HRQL of patients with juvenile idiopathic arthritis (JIA) coming from three geographic areas.

Methods. The HRQL was assessed through the Child Health Questionnaire (CHQ). A total of 30 countries were included grouped in three geographic areas: 16 countries in Western Europe; 10 in Eastern Europe; and four in Latin America. Potential determinants of poor HRQL included demographic data, physician's and parent's global assessments, measures of joint inflammation, disability as measured by Childhood Health Assessment Questionnaire (CHAQ) and erythrocyte sedimentation rate. Poor HRQL was defined as a CHQ physical summary score (PhS) or psychosocial summary score (PsS) <2 S.D. from that of healthy children.

Results. A total of 3167 patients with JIA, younger than 18 yrs, were included in this study. The most affected health concepts (<2 S.D. from healthy children) that differentiate the three geographic areas include physical functioning, bodily pain/discomfort, global health, general health perception, change in health with respect to the previous year, self-esteem and family cohesion. Determinants for poor HRQL were similar across geographic areas with physical well-being mostly affected by the level of disability while the psychosocial well-being by the intensity of pain.

Conclusion. We found that patients with JIA have a significant impairment of their HRQL compared with healthy peers, particularly in the physical domain. Disability and pain are the most important determinants of physical and psychosocial well-being irrespective of the geographic area of origin.

KEY WORDS: Juvenile idiopathic arthritis, Quality of life, Disability, Pain

Submitted 16 February 2006; revised version accepted 19 May 2006.
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A Cespedes-Cruz, R Gutierrez-Suarez, A Pistorio, A Ravelli, A Loy, K J Murray, V Gerloni, N Wulffraat, S Oliveira, J Walsh, et al.
Methotrexate improves the health-related quality of life of children with juvenile idiopathic arthritis
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