Proxy-reported quality of life of children with intestinal pseudo-obstruction and caregivers' self-reported health outcomes in China.

OBJECTIVES: This study aimed to evaluate health-related quality of life (HRQoL) and identify associated factors in Chinese children with pediatric intestinal pseudo-obstruction (PIPO) and their caregivers, while assessing caregiving burden and depression levels, and comparing the mother-father dyads. METHODS: A cross-sectional, questionnaire-based survey was completed by 68 caregivers from 46 patient families. Multidimensional assessments included: Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales (PedsQL™ 4.0 GCM) for children; PedsQL™ 3.0 Family Impact Module (FIM) for caregivers; Zarit Caregiver Burden Interview (ZBI) and Patient Health Questionnaire-9 (PHQ-9) for depression. Two-sample t-tests or one-way analysis of variance were used to compare average scores across subgroups. Intercorrelations were examined using Spearman's rank correlation. RESULTS: Compared with healthy controls, children with PIPO and caregivers showed significantly worse HRQoL across all domains (all p < 0.001). Recent hospitalization and higher treatment costs significantly lowered overall HRQoL scores both in children and caregivers (all p < 0.05). Children's HRQoL was also associated with body mass index (BMI)-for-age Z-score (BMI-Z) (p < 0.001). Higher financial burden and lower BMI-Z were also linked to increased parental care burden and depression scores (p < 0.05). Additionally, children's HRQoL positively correlated with caregivers' HRQoL (p < 0.001). HRQoL negatively correlated with caregiving burden and depression scores (p < 0.001). Fathers reported lower caregiving burden, but higher depression scores compared with mothers (p < 0.001). CONCLUSIONS: This study quantifies the burden of PIPO, demonstrating significant HRQoL impairment in both children and caregivers, as well as notable financial and psychosocial impacts on families. Future policies and guidelines should place greater emphasis on multidisciplinary care models to improve HRQoL.