Association of Health-Related Quality of Life in Childhood-Onset Systemic Lupus Erythematosus With Ethnicity: Results From a Multiethnic Multicenter Canadian Cohort


  • The Canadian Network for Improved Outcomes in Systemic Lupus Erythematosus 1000 Faces Investigators are shown in Appendix A.



To evaluate the influence of ethnicity on self-reported health-related quality of life (HRQOL) in the Canadian childhood-onset systemic lupus erythematosus (cSLE) population.


Patients with cSLE at 4 pediatric centers were consecutively enrolled. Sociodemographics and multiple disease activity measures were collected. The Child Health Questionnaire (CHQ) was administered and analyzed by ethnicity.


We enrolled 213 cSLE patients, and complete data from 196 patients with the following ethnicities were analyzed: white (33%), Asian (32%), South Asian (16%), African American (11%), Latino/Hispanic (5%), and Aboriginal (4%). Compared to healthy children, cSLE patients rated their HRQOL significantly more poorly in 9 of 10 individual domains, and in 4 of 10 domains when compared to a cohort of juvenile arthritis patients. Within the cSLE cohort, CHQ scores were lower in 5 of 10 domains in white patients versus nonwhite ethnicities (P < 0.05 for each). Physical summary scores were lower for white patients compared to the other ethnicities aggregated together (mean ± SD 46.0 ± 11.9 versus 50.4 ± 10.1; P = 0.009); however, psychosocial summary scores were similar among the groups (mean ± SD 40.5 ± 14.6 versus 42.8 ± 12.7; P = 0.26). Disease activity measures, including the Systemic Lupus Erythematosus Disease Activity Index 2000, the Systemic Lupus Activity Measure, Revised, and physician global visual analog scale, were similar across ethnicities. However, patient-reported Systemic Lupus Erythematosus Activity Questionnaire symptom scores were greater in patients of white ethnicity compared to those of Asian ethnicity (mean ± SD 8.2 ± 5.8 versus 4.5 ± 4.7; P = 0.004).


The self- and parent-reported health status of Canadian cSLE patients differed across ethnicities, with white patients reporting lower HRQOL despite similar and overall low disease activity.