title: Relationship between health-related quality of life, disease activity and disease damage in a prospective international multicenter cohort of childhood onset systemic lupus erythematosus patients.
abstract: Previously, we described associations between health-related quality of life (HRQOL) and disease-related factors among childhood onset systemic lupus erythematosus (cSLE) patients. Here we determined the relationship between HRQOL, disease activity and damage in a large prospective international cohort of cSLE. We compared HRQOL, disease activity and disease damage across different continents and examined the relationship between children's and parents' assessments of HRQOL. Patients with cSLE and their parents completed HRQOL measures at enrollment and ≥4 follow-up visits. Physicians assessed disease activity and damage. The multinational cohort ( n = 467) had relatively low disease activity and damage. Patient and parent HRQOL scores were significantly correlated. Asian and European patients had the highest HRQOL, while South and North American patients had lower HRQOL scores. Renal, CNS, skin and musculoskeletal systems exhibited the highest levels of damage. North and South American and Asian patients were more likely to have disease damage and activity scores above median values, compared with Europeans. Asians were more likely to use cyclophosphamide/rituximab. Female gender, high disease activity and damage, non-White ethnicity, and use of cyclophosphamide and/rituximab were related to lower HRQOL. HRQOL domain scores continue to emphasize that SLE has widespread impact on all aspects of children's and parents' lives.
authors: 1 Rutgers-Robert Wood Johnson Medical School, New Brunswick, USA.
authors: L N
authors: LN
authors: Moorthy
authors: 2 Rutgers School of Public Health, Piscataway, USA.
authors: M E
authors: ME
authors: Baldino
authors: 1 Rutgers-Robert Wood Johnson Medical School, New Brunswick, USA.
authors: V
authors: V
authors: Kurra
authors: 1 Rutgers-Robert Wood Johnson Medical School, New Brunswick, USA.
authors: D
authors: D
authors: Puwar
authors: 2 Rutgers School of Public Health, Piscataway, USA.
authors: A
authors: A
authors: Llanos
authors: 3 Hospital for Special Surgery, New York, USA.
authors: M G E
authors: MG
authors: Peterson
authors: 4 University of Michigan, Department of Anesthesiology, USA.
authors: A L
authors: AL
authors: Hassett
authors: 3 Hospital for Special Surgery, New York, USA.
authors: T J A
authors: TJ
authors: Lehman
mesh_terms: D000293:Adolescent; D017668:Age of Onset; D002648:Child; D002675:Child, Preschool; D003520:Cyclophosphamide / Q000627:therapeutic use; D005260:Female; D006304:Health Status; D006801:Humans; D006886:Hydroxychloroquine / Q000627:therapeutic use; D007391:International Cooperation; D016015:Logistic Models; D008180:Lupus Erythematosus, Systemic / Q000188:drug therapy* / Q000208:ethnology*; D008297:Male; D015999:Multivariate Analysis; D010372:Pediatrics; D011446:Prospective Studies; D011788:Quality of Life; D044469:Racial Groups; D012720:Severity of Illness Index; D012923:Social Class; D055815:Young Adult
chemical_list: D006886:Hydroxychloroquine; D003520:Cyclophosphamide
keywords: HRQOL; childhood onset SLE; disease activity; disease damage