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Health-related quality of life and its relationship to patient disease course in childhood-onset systemic lupus erythematosus
Journal of Rheumatology, 07/07/09
Brunner HI et al. – Study reports that health-related quality of life (HRQOL) in children with childhood-onset systemic lupus erythematosus (cSLE) was significantly lower vs healthy populations, with a differential effect due to organ-specific involvement. Higher disease activity and damage are associated with lower HRQOL, and worsening of cSLE leads to a further decline.
Methods- Main objectives of this study were to:
- Estimate HRQOL of children with cSLE vs normative cohorts
- Assess the relationship of HRQOL with cSLE disease activity and damage, and
- Determine the effects of changes of disease activity on HRQOL
- Pts (n=98) followed every 3 months completed HRQOL measures:
- Pediatric Quality of Life Inventory Generic Core scale (PedsQL-GC)
- Rheumatology Module (PedsQL-RM), and
- Child Health Questionnaire (CHQ)
- British Isles Lupus Activity Group Index (BILAG) was used to measure organ-system-specific disease activity
- Physicians rated the course of cSLE between visits
- At baseline, mean score of the PedsQL-GC and the PedsQL-RM was 75 and 79 respectively
- Mean of the CHQ physical summary score (CHQ-PHS) was 49 and that of the CHQ psychological summary score was 42
- Higher BILAG scores, especially in the general, musculoskeletal, neurological, and vascular, but not the mucocutaneous, renal, cardiovascular, or hematological BILAG domains, were associated with a lower HRQOL
- Pts with damage had lower HRQOL vs those w/o damage
- All HRQOL measures included were at most modestly responsive to clinically important changes with cSLE
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