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

Systemic lupus erythematosus (SLE) in children is a severe chronic illness. We aimed to assess the proxy-reported health-related quality of life (HRQoL) of children with SLE and the well-being of their caregivers. In total, 173 caregivers whose children were diagnosed with SLE were recruited from a tertiary children’s hospital. The proxy-reported Pediatric Quality of Life Instrument™ Version 4.0 Generic Core Module (PedsQL™ 4.0 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. T-tests and one-way ANOVA assessed differences in scale scores and total score of PedsQL^TM 4.0 GCM. Effect sizes were calculated for clinical relevance. Multivariate linear regression analysis was used to identify the factors associated with children’s HRQoL. Pearson correlation analysis was utilized to assess the correlation between children’s HRQoL and the well-being of their caregivers. Children with SLE were reported by their caregivers to have lower scores in physical functioning, emotional functioning, school functioning, psychosocial health summary score, and total score of PedsQL™ 4.0 GCM compared to healthy children. The multivariate linear regression analysis showed parental employment status, perceived financial burden, and changes in body image were significantly associated with the relatively low HRQoL of children (p values < 0.05). A total of 30.6% of caregivers had symptoms of depression, and 10.4% had symptoms of major depression, as indicated by the score of WHO-5. Scale scores and total score of PedsQL™ 4.0 GCM were significantly correlated with the score of WHO-5 (p values < 0.05). Conclusion: This study comprehensively analyzes proxy-reported HRQoL of SLE children in China and identifies multiple associated factors. The caregiver’s well-being was correlated to the children’s HRQoL. We emphasize the necessity for comprehensive support for children with SLE, their caregivers, and extended family members. (Table presented.)