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Rigshospitalet - a part of Copenhagen University Hospital

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

Research output: Contribution to journalJournal articleResearchpeer-review


  1. Breast cancer in systemic lupus

    Research output: Contribution to journalJournal articleResearchpeer-review

  • L N Moorthy
  • M E Baldino
  • V Kurra
  • D Puwar
  • A Llanos
  • M G E Peterson
  • A L Hassett
  • T J A Lehman
  • International SMILEY© Collaborative group (Susan Nielsen, Jesper Kjærgaard,Members)
  • Susan Mary Nielsen
  • Jesper Kjærgaard
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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.

Original languageEnglish
Issue number3
Pages (from-to)255-265
Number of pages11
Publication statusPublished - Mar 2017

ID: 49876033