DOI: 10.1159/hrp/adaag020.254 ISSN: 1663-2818

P-196: Quality of life and caregiver burden in children with type 1 diabetes in China: a cross-sectional online survey

X Zheng, Y Zhang, Q Feng, W Li, M Zhang, Z Zhou, J Tan, J Weng

Abstract

Introduction

Evidence on health-related quality of life (HRQoL) and caregiver burden among children with type 1 diabetes (T1D) in China is limited.

Objectives

To assess HRQoL in children with T1D and caregiver burden in China.

Methods

A national cross-sectional online survey was conducted in children with T1D (8-17 years) and their caregivers. Children completed EuroQoL 5-Dimension Youth Version 5-Level (EQ-5D-Y-5L) and Pediatric Quality of Life Inventory (PedsQL) 3.0 Diabetes Module. Caregivers completed EuroQoL 5-Dimension 5-Level (EQ-5D-5L), Zarit Burden Interview 22-Item (ZBI-22) and Work Productivity and Activity Impairment questionnaire. Linear regressions were applied to identify factors associated with HRQoL.

Results

In Feb-Mar 2026, 197 child-caregiver pairs were enrolled. Children were 48.2% male, with a mean age of 12.4±2.6 years, and a mean T1D duration of 3.7±2.9 years. Diabetic ketoacidosis at T1D diagnosis was the most reported complication (68.5%). Caregivers had a mean age of 39.9±5.3 years and 20.8% were male. Mean EQ-5D-Y-5L utility was 0.944±0.070, with feeling worried, sad or unhappy most frequently reported (58.4%). Mean PedsQL score was 64.2±15.5, with worry being the most affected domain (mean 59.5±21.7). Among caregivers, mean EQ-5D-5L utility was 0.939± 0.074; anxiety/depression was most reported (53.3%). Mean ZBI-22 score was 28.2±15.7, indicating mild to moderate caregiver burden. Employed caregivers reported 34.0% work impairment. Multivariable regressions showed child’s anxiety was associated with lower EQ-5D-Y-5L utility (β=-0.07, 95% CI: -0.10, -0.03, p<0.001), and lower PedsQL scores (β=-10.18, 95% CI: -17.34, -3.03, p=0.006). HbA1c >7% was also associated with lower PedsQL scores (β=-5.38, 95% CI: -10.32, -0.44, p=0.033).

Conclusions

Children with T1D had substantial psychological burden and impaired HRQoL, while caregivers reported significant mental burden and productivity loss, highlighting the need for integrated medical and psychosocial care and interventions delaying disease onset.

More from our Archive