Health-related quality of life of children with systemic lupus erythematosus and well-being of caregivers: a cross-sectional survey in China

Objectives Systemic lupus erythematosus (SLE) in children is a chronic and severe illness. We aimed to assess the health-related quality of life (HRQoL) of children with SLE and well-being of their caregivers. Methods In total, 173 children with a diagnosis of SLE were recruited from a tertiary children’s hospital. The proxy-reported PedsQL™ 4.0 Generic Core Module (PedsQL GCM) was used to measure the HRQoL of children, and the 5-item World Health Organization Well-Being Index (WHO-5) was applied to measure caregivers’ well-being. Differences in scale scores and total score of PedsQL GCM were assessed by t tests and one-way ANOVA. Effect sizes were calculated for clinical relevance. Multivariate linear regression analysis was used to identify the associated factors of children’s HRQoL. Pearson correlation analysis was utilized to assess the correlation between children’s HRQoL and the well-being of their caregivers. Results Children with SLE were reported lower scores in physical functioning, emotional functioning, school functioning, psychosocial health summary score, and total score of PedsQL GCM compared to healthy children. The multivariate linear regression analysis shows parental employment status, perceived financial burden and the changes in body image were significantly associated with the relatively low HRQoL of children (p values < 0.05). 30.6% of caregivers had depression and 10.4% had major depression as indicated by the score of WHO-5. Scale and overall scores of PedsQL GCM were significantly correlated with the score of WHO-5 (p values < 0.05). Conclusions This study provides a comprehensive analysis of SLE children’s HRQoL in China and identified multiple determinants. Caregiver’s well-being was evaluated and was closely related to children’s HRQoL. We emphasizes the necessity for comprehensive support for children with SLE, their caregivers, and extended family members.