title: 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.
abstract: OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: IRCCS G. Gaslini, Università di Genova, Pediatria II - Reumatologia, Largo Gaslini, 5 16147 Genova, Italy.
authors.forename: R
authors.initials: R
authors.lastname: Gutiérrez-Suárez
authors.forename: A
authors.initials: A
authors.lastname: Pistorio
authors.forename: A
authors.initials: A
authors.lastname: Cespedes Cruz
authors.forename: X
authors.initials: X
authors.lastname: Norambuena
authors.forename: B
authors.initials: B
authors.lastname: Flato
authors.forename: I
authors.initials: I
authors.lastname: Rumba
authors.forename: M
authors.initials: M
authors.lastname: Harjacek
authors.forename: S
authors.initials: S
authors.lastname: Nielsen
authors.forename: G
authors.initials: G
authors.lastname: Susic
authors.forename: D
authors.initials: D
authors.lastname: Mihaylova
authors.forename: C
authors.initials: C
authors.lastname: Huemer
authors.forename: J
authors.initials: J
authors.lastname: Melo-Gomes
authors.forename: B
authors.initials: B
authors.lastname: Andersson-Gare
authors.forename: Z
authors.initials: Z
authors.lastname: Balogh
authors.forename: C
authors.initials: C
authors.lastname: De Cunto
authors.forename: R
authors.initials: R
authors.lastname: Vesely
authors.forename: K
authors.initials: K
authors.lastname: Pagava
authors.forename: A M
authors.initials: AM
authors.lastname: Romicka
authors.forename: R
authors.initials: R
authors.lastname: Burgos-Vargas
authors.forename: A
authors.initials: A
authors.lastname: Martini
authors.forename: N
authors.initials: N
authors.lastname: Ruperto
mesh_terms: D000293:Adolescent; D001171:Arthritis, Juvenile / Q000208:ethnology / Q000523:psychology / Q000534:rehabilitation*; D002648:Child; D003431:Cross-Cultural Comparison; D003430:Cross-Sectional Studies; D004185:Disability Evaluation; D005060:Europe / Q000453:epidemiology; D005061:Europe, Eastern / Q000453:epidemiology; D005260:Female; D006801:Humans; D007843:Latin America / Q000453:epidemiology; D008297:Male; D010147:Pain Measurement / Q000379:methods; D011788:Quality of Life; D012720:Severity of Illness Index