Proxy-reported health-related quality of life in children with omphalocele: a cross-sectional study in China

Background: Omphalocele is a congenital anomaly requiring complex treatment. Existing evidence on the health-related quality of life (HRQoL) in omphalocele is limited by small sample sizes, inconsistent findings, and a lack of data from Chinese populations. This study aimed to quantify HRQoL in children with omphalocele using the Pediatric Quality of Life Inventory (PedsQL) in a relatively large patient cohort and to identify demographic and clinical factors associated with children's HRQoL. Methods: We conducted a cross-sectional, questionnaire-based study among caregivers of children with omphalocele treated at the Children's Hospital, Zhejiang University School of Medicine in Hangzhou, China. In total, caregivers of 124 children were recruited and completed the questionnaire. HRQoL was assessed using the Chinese version of PedsQL Infants Scales (parent-proxy for infants/toddlers aged 1-24 months) and PedsQL Generic Core Modules (GCM) (parent-proxy for children aged 2-4 years). Additionally, demographic and clinical information were also collected via questionnaires. Differences in HRQoL scores across subgroups were assessed by two-independent-samples t-tests and one-way analysis of variance (ANOVA). Multivariate linear regression analysis was performed to identify the determinants associated with children's HRQoL. Results: Among 124 children, the median age was 2.0 years, and 46.8% were girls. For children aged 1-24 months, the total score and scores of certain scales (i.e., physical functioning, physical symptoms, emotional functioning, cognitive functioning) were significantly lower in patients than scores in the healthy controls (P values