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Rigshospitalet - en del af Københavns Universitetshospital
Udgivet

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

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

DOI

  1. Breast cancer in systemic lupus

    Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer 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
Vis graf over relationer

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.

OriginalsprogEngelsk
TidsskriftLupus
Vol/bind26
Udgave nummer3
Sider (fra-til)255-265
Antal sider11
ISSN0961-2033
DOI
StatusUdgivet - mar. 2017

ID: 49876033