Quality of life of children with short bowel syndrome and their caregivers from the perspective of caregivers: a cross-sectional study in China

Background: Short bowel syndrome (SBS) is the most common cause of intestinal failure, requiring long-term of parenteral nutrition support. The objectives of this study was to evaluate the QoL of children with SBS and their caregivers, as well as the association with burden and depression of caregivers. Methods: Data were collected through a cross-sectional study using the proxy-reported PedsQL 4.0 Generic Core Module (PedsQL GCM) and PedsQL 3.0 Family Impact Module (FIM) to assess the HRQoL of children and their caregivers. Differences in HRQoL scores across subgroups were assessed using two-sample t-tests, one-way ANOVA, and a multivariate logistic regression analysis to identify potential determinants of HRQoL. The Zarit Burden Interview (ZBI) and the Patient Health Questionnaire (PHQ-9) were employed to assess the burden and depression of the caregivers. Results: 96 children with SBS and their caregivers participated in the study. Compared with established norms for healthy children, children with SBS aged 1 to 24 months exhibited significantly lower scores in the physical health summary ( p < 0.01). Children with SBS aged 2 to 18 years scored an average of 5.99 points lower in the psychosocial health summary (p = 0.01) and 4.56 points lower in the total score ( p = 0.039). Families of a child with SBS exhibited significantly lower scores across nearly all dimensions of the PedsQL3.0 FIM compared with those of healthy controls, with the exception of the social functioning and daily activities dimensions ( p < 0.05). In multivariate logistic regression analysis, younger age, male gender and perceived financial burden were independently associated with a decreased total score on the PedsQL FIM ( p < 0.05). The Spearman correlation analysis revealed that the PHQ-9 and the ZBI total score were negatively correlated with PedsQL 4.0 GCM scale score as well as total scale ( p < 0.02) among children aged 2-18years. Conclusion: This study provides a comprehensive analysis of HRQoL among children with SBS and their caregivers and identifies multiple associated predictors. The burden of caregivers and depression affect the HRQoL of children with SBS.We highlight the importance of providing increased attention and support not only to the patients but also to their caregivers.