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Keywords:

  • Systemic lupus erythematosus;
  • Health-related quality of life;
  • Disease activity;
  • Organ damage

Abstract

Objective

To assess the health-related quality of life (HRQL) of patients with juvenile-onset systemic lupus erythematosus (JSLE) and its relationship with disease activity and accumulated damage.

Methods

In this cross-sectional study, HRQL was assessed using the Child Health Questionnaire (CHQ), disease activity using the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI), and accumulated damage using the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI).

Results

A total of 297 patients were included. The mean ± SD physical and psychosocial summary scores of the CHQ were 40.2 ± 15.0 and 44.8 ± 10.7, respectively. The most impaired CHQ subscales were global health, general health perceptions, and parent impact–emotional. The SLEDAI score was significantly correlated with both the physical summary score (r = −0.29, P < 0.0001) and psychosocial summary score (r = −0.25, P < 0.0001), whereas the SDI score was significantly correlated only with the physical summary score (r = −0.23, P = 0.0001).

Conclusion

We found that patients with JSLE have significant impairment of their HRQL, particularly in the physical domain. HRQL may be affected by both disease activity and accumulated damage, particularly in the renal, central nervous, and musculoskeletal systems.