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

Abstract

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.

Long‐Term Clinical Outcomes in a Cohort of Adults With Childhood‐Onset Systemic Lupus Erythematosus

“…High disease activity (SLEDAI‐2K ≥8) had a significant negative effect on HRQoL, which is supported by other studies . Interestingly, an even larger negative effect was seen with regard to factors affecting physical appearance.…”

“…In children with childhood‐onset SLE, health‐related quality of life (HRQoL) has been shown to be impaired compared to healthy peers, which has been at least partially attributed to disease activity and damage . There were no data available regarding HRQoL in adult patients with childhood‐onset SLE or pertaining to the specific factors that could influence HRQoL in these patients.…”

Symptom clustering in patients with childhood‐onset systemic lupus erythematosus

“…Moorthy et al. () conducted a longitudinal study on the relationship between health‐related quality of life and the disease parameters of SLEc. The findings indicated that disease activity and disease damage were not significantly different across the time continents throughout the 3‐year period.…”

Fatigue and depression predict reduced health-related quality of life in childhood-onset lupus

“…A recent prospective international multicenter longitudinal cohort study (n=467) found that higher disease activity and higher damage was associated with lower HRQoL in cSLE patients 29 . On the other hand in our study, and in line with some earlier studies, disease activity and accumulated damage were not found to highly correlate with HRQoL in cSLE 5, 6 .…”