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Rheumatology Advance Access published online on July 28, 2006

Rheumatology, 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
Received February 16, 2006
Accepted May 19, 2006

Original Papers

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-Suárez 1, A. Pistorio 2, A. Cespedes Cruz 1, X. Norambuena 1, B. Flato 3, I. Rumba 4, M. Harjacek 5, S. Nielsen 6, G. Susic 7, D. Mihaylova 8, C. Huemer 9, J. Melo-Gomes 10, B. Andersson-Gare 11, Z. Balogh 12, C. De Cunto 13, R. Vesely 14, K. Pagava 15, A. M. Romicka 16, R. Burgos-Vargas 17, A. Martini 18, and N. Ruperto 1 *, for the Pediatric Rheumatology International Trials Organisation (PRINTO)

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

* To whom correspondence should be addressed.
N. Ruperto, 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.

Keywords: Juvenile idiopathic arthritis; Quality of life; Disability; Pain.
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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.
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