title: 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.
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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: IRCCS G. Gaslini, Pediatria II, Reumatologia, Pediatric Rheumatology International Trials Organization, Genoa, Italy.
authors.forename: Sheila
authors.initials: S
authors.lastname: Oliveira
authors.forename: Angelo
authors.initials: A
authors.lastname: Ravelli
authors.forename: Angela
authors.initials: A
authors.lastname: Pistorio
authors.forename: Esteban
authors.initials: E
authors.lastname: Castell
authors.forename: Clara
authors.initials: C
authors.lastname: Malattia
authors.forename: Anne Marie
authors.initials: AM
authors.lastname: Prieur
authors.forename: Claudia
authors.initials: C
authors.lastname: Saad-Magalhães
authors.forename: Kevin J
authors.initials: KJ
authors.lastname: Murray
authors.forename: Sang-Cheol
authors.initials: SC
authors.lastname: Bae
authors.forename: Rik
authors.initials: R
authors.lastname: Joos
authors.forename: Ivan
authors.initials: I
authors.lastname: Foeldvari
authors.forename: Carolina
authors.initials: C
authors.lastname: Duarte-Salazar
authors.forename: Nico
authors.initials: N
authors.lastname: Wulffraat
authors.forename: Pekka
authors.initials: P
authors.lastname: Lahdenne
authors.forename: Pavla
authors.initials: P
authors.lastname: Dolezalova
authors.forename: Jaime
authors.initials: J
authors.lastname: de Inocencio
authors.forename: Florence
authors.initials: F
authors.lastname: Kanakoudi-Tsakalidou
authors.forename: Michael
authors.initials: M
authors.lastname: Hofer
authors.forename: Irina
authors.initials: I
authors.lastname: Nikishina
authors.forename: Huri
authors.initials: H
authors.lastname: Ozdogan
authors.forename: Philip J
authors.initials: PJ
authors.lastname: Hashkes
authors.forename: Jeanne M
authors.initials: JM
authors.lastname: Landgraf
authors.forename: Alberto
authors.initials: A
authors.lastname: Martini
authors.forename: Nicolino
authors.initials: N
authors.lastname: Ruperto
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D001171:Arthritis, Juvenile / Q000150:complications* / Q000523:psychology* / Q000628:therapy; D016022:Case-Control Studies; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D003430:Cross-Sectional Studies; D004185:Disability Evaluation; D005260:Female; D006304:Health Status; D006306:Health Surveys; D006801:Humans; D007391:International Cooperation; D008297:Male; D010146:Pain / Q000150:complications / Q000209:etiology; D019727:Proxy; D011584:Psychology; D011788:Quality of Life; D012720:Severity of Illness Index