Health-related quality of life in juvenile-onset systemic lupus erythematosus and its relationship to disease activity and damage

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 ISLE 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.