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 |
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| Authors: | Sheila Oliveira Angelo Ravelli Angela Pistorio Esteban Castell Clara Malattia Anne Marie Prieur Claudia Saad‐Magalhães Kevin J. Murray Sang‐Cheol Bae Rik Joos Ivan Foeldvari Carolina Duarte‐Salazar Nico Wulffraat Pekka Lahdenne Pavla Dolezalova Jaime de Inocencio Florence Kanakoudi‐Tsakalidou Michael Hofer Irina Nikishina Huri Ozdogan Philip J. Hashkes Jeanne M. Landgraf Alberto Martini Nicolino Ruperto |
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| Affiliation: | 1. IRCCS G. Gaslini, Pediatria II, Reumatologia, Pediatric Rheumatology International Trials Organization, Genoa, Italy;2. IRCCS G. Gaslini, Servizio di Epidemiologia e Biostatistica, Genoa, Italy;3. H?pital Necker Enfants Malades, Paris, France;4. Universidade Estadual Paulista, Botucatu, Brazil;5. Princess Margaret Hospital for Children, Perth, Australia;6. Hospital for Rheumatic Diseases, Hanyang University Medical Center, Seoul, Korea;7. Universitair Ziekenhuis Gent, Centrum Voor Kinderreumatologie, Ghent, Belgium;8. Allgemeines Krankenhaus Eilbeck, Hamburg, Germany;9. Instituto Nacional de Rehabilitación, Tlalpan Mexico DF, Mexico;10. Wilhelmina Kinderziekenhuis, Utrecht, The Netherlands;11. Hospital for Children and Adolescents, Helsinki University Central Hospital, Helsinki, Finland;12. 1st Faculty of Medicine and General Faculty Hospital, Prague, Czech Republic;13. CS Estrecho de Corea, Instituto Madrile?o de la Salud, Madrid, Spain;14. Aristotle University of Thessaloniki, Ippokration General Hospital, Thessalonika, Greece;15. Pédiatrie, Lausanne, and H?pitaux Universitaires de Genève, Pédiatrie, Geneva, Switzerland;16. Institute of Rheumatology RAMS, Moscow, Russia;17. Cerrahpasa Tip Fakultesi, Istanbul, Turkey;18. Cleveland Clinic Foundation, Cleveland, Ohio;19. HealthActCHQ, Boston, Massachusetts;20. IRCCS G. Gaslini, Pediatria II, Università degli Studi, Genoa, Italy |
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| Abstract: | 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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| Keywords: | Health‐related quality of life Juvenile idiopathic arthritis Disability |
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