Proxy-reported health-related quality of life of patients with juvenile idiopathic arthritis: The pediatric rheumatology international trials organization multinational quality of life cohort study
Sheila Oliveira
IRCCS G. Gaslini, Pediatria II, Reumatologia, Pediatric Rheumatology International Trials Organization, Genoa, Italy
Search for more papers by this authorAngelo Ravelli
IRCCS G. Gaslini, Pediatria II, Reumatologia, Pediatric Rheumatology International Trials Organization, Genoa, Italy
Search for more papers by this authorAngela Pistorio
IRCCS G. Gaslini, Servizio di Epidemiologia e Biostatistica, Genoa, Italy
Search for more papers by this authorEsteban Castell
IRCCS G. Gaslini, Pediatria II, Reumatologia, Pediatric Rheumatology International Trials Organization, Genoa, Italy
Search for more papers by this authorClara Malattia
IRCCS G. Gaslini, Pediatria II, Reumatologia, Pediatric Rheumatology International Trials Organization, Genoa, Italy
Search for more papers by this authorAnne Marie Prieur
Hôpital Necker Enfants Malades, Paris, France
Search for more papers by this authorClaudia Saad-Magalhães
Universidade Estadual Paulista, Botucatu, Brazil
Search for more papers by this authorKevin J. Murray
Princess Margaret Hospital for Children, Perth, Australia
Search for more papers by this authorSang-Cheol Bae
Hospital for Rheumatic Diseases, Hanyang University Medical Center, Seoul, Korea
Search for more papers by this authorRik Joos
Universitair Ziekenhuis Gent, Centrum Voor Kinderreumatologie, Ghent, Belgium
Search for more papers by this authorIvan Foeldvari
Allgemeines Krankenhaus Eilbeck, Hamburg, Germany
Search for more papers by this authorCarolina Duarte-Salazar
Instituto Nacional de Rehabilitación, Tlalpan Mexico DF, Mexico
Search for more papers by this authorNico Wulffraat
Wilhelmina Kinderziekenhuis, Utrecht, The Netherlands
Search for more papers by this authorPekka Lahdenne
Hospital for Children and Adolescents, Helsinki University Central Hospital, Helsinki, Finland
Search for more papers by this authorPavla Dolezalova
1st Faculty of Medicine and General Faculty Hospital, Prague, Czech Republic
Search for more papers by this authorJaime de Inocencio
CS Estrecho de Corea, Instituto Madrileño de la Salud, Madrid, Spain
Search for more papers by this authorFlorence Kanakoudi-Tsakalidou
Aristotle University of Thessaloniki, Ippokration General Hospital, Thessalonika, Greece
Search for more papers by this authorMichael Hofer
Pédiatrie, Lausanne, and Hôpitaux Universitaires de Genève, Pédiatrie, Geneva, Switzerland
Search for more papers by this authorAlberto Martini
IRCCS G. Gaslini, Pediatria II, Università degli Studi, Genoa, Italy
Search for more papers by this authorCorresponding Author
Nicolino Ruperto
IRCCS G. Gaslini, Pediatria II, Reumatologia, Pediatric Rheumatology International Trials Organization, Genoa, Italy
Pediatric Rheumatology International Trials Organization, IRCCS G. Gaslini, Università di Genova, Pediatria II - Reumatologia, Largo Gaslini, 5, 16147 Genoa, ItalySearch for more papers by this authorSheila Oliveira
IRCCS G. Gaslini, Pediatria II, Reumatologia, Pediatric Rheumatology International Trials Organization, Genoa, Italy
Search for more papers by this authorAngelo Ravelli
IRCCS G. Gaslini, Pediatria II, Reumatologia, Pediatric Rheumatology International Trials Organization, Genoa, Italy
Search for more papers by this authorAngela Pistorio
IRCCS G. Gaslini, Servizio di Epidemiologia e Biostatistica, Genoa, Italy
Search for more papers by this authorEsteban Castell
IRCCS G. Gaslini, Pediatria II, Reumatologia, Pediatric Rheumatology International Trials Organization, Genoa, Italy
Search for more papers by this authorClara Malattia
IRCCS G. Gaslini, Pediatria II, Reumatologia, Pediatric Rheumatology International Trials Organization, Genoa, Italy
Search for more papers by this authorAnne Marie Prieur
Hôpital Necker Enfants Malades, Paris, France
Search for more papers by this authorClaudia Saad-Magalhães
Universidade Estadual Paulista, Botucatu, Brazil
Search for more papers by this authorKevin J. Murray
Princess Margaret Hospital for Children, Perth, Australia
Search for more papers by this authorSang-Cheol Bae
Hospital for Rheumatic Diseases, Hanyang University Medical Center, Seoul, Korea
Search for more papers by this authorRik Joos
Universitair Ziekenhuis Gent, Centrum Voor Kinderreumatologie, Ghent, Belgium
Search for more papers by this authorIvan Foeldvari
Allgemeines Krankenhaus Eilbeck, Hamburg, Germany
Search for more papers by this authorCarolina Duarte-Salazar
Instituto Nacional de Rehabilitación, Tlalpan Mexico DF, Mexico
Search for more papers by this authorNico Wulffraat
Wilhelmina Kinderziekenhuis, Utrecht, The Netherlands
Search for more papers by this authorPekka Lahdenne
Hospital for Children and Adolescents, Helsinki University Central Hospital, Helsinki, Finland
Search for more papers by this authorPavla Dolezalova
1st Faculty of Medicine and General Faculty Hospital, Prague, Czech Republic
Search for more papers by this authorJaime de Inocencio
CS Estrecho de Corea, Instituto Madrileño de la Salud, Madrid, Spain
Search for more papers by this authorFlorence Kanakoudi-Tsakalidou
Aristotle University of Thessaloniki, Ippokration General Hospital, Thessalonika, Greece
Search for more papers by this authorMichael Hofer
Pédiatrie, Lausanne, and Hôpitaux Universitaires de Genève, Pédiatrie, Geneva, Switzerland
Search for more papers by this authorAlberto Martini
IRCCS G. Gaslini, Pediatria II, Università degli Studi, Genoa, Italy
Search for more papers by this authorCorresponding Author
Nicolino Ruperto
IRCCS G. Gaslini, Pediatria II, Reumatologia, Pediatric Rheumatology International Trials Organization, Genoa, Italy
Pediatric Rheumatology International Trials Organization, IRCCS G. Gaslini, Università di Genova, Pediatria II - Reumatologia, Largo Gaslini, 5, 16147 Genoa, ItalySearch for more papers by this authorAbstract
Objective
To investigate the proxy-reported health-related quality of life (HRQOL) and its determinants in patients with juvenile idiopathic arthritis (JIA).
Methods
In this multinational, multicenter, cross-sectional study, HRQOL of patients with JIA was assessed through the Child Health Questionnaire (CHQ) and was compared with that of healthy children of similar age from the same geographic area. Potential determinants of HRQOL included demographic data, physician's and parent's global assessments, measures of joint inflammation, Childhood Health Assessment Questionnaire (CHAQ), and erythrocyte sedimentation rate.
Results
A total of 6,639 participants (3,324 with JIA and 3,315 healthy) were enrolled from 32 countries. The mean ± SD physical and psychosocial summary scores of the CHQ were significantly lower in patients with JIA than in healthy children (physical: 44.5 ± 10.6 versus 54.6 ± 4.0, P < 0.0001; psychosocial: 47.6 ± 8.7 versus 51.9 ± 7.5, P < 0.0001), with the physical well-being domain being most impaired. Patients with persistent oligoarthritis had better HRQOL compared with other subtypes, whereas HRQOL was similar across patients with systemic arthritis, polyarthritis, and extended oligoarthritis. A CHAQ score >1 and a pain intensity rating >3.4 cm on a 10-cm visual analog scale were the strongest determinants of poorer HRQOL in the physical and psychosocial domains, respectively.
Conclusion
We found that patients with JIA have a significant impairment of their HRQOL compared with healthy peers, particularly in the physical domain. Physical well-being was mostly affected by the level of functional impairment, whereas the intensity of pain had the greatest influence on psychosocial health.
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