OBJECTIVES: Thirty to sixty percent of children required dialysis and kidney transplantation was associated with childhood onset chronic kidney disease (CKD); importantly it poses multiple threats to growth, development and future life as an adult. This study aims to identify and assess health-related quality of life (HRQOL) from both children and observers (parents proxy) perspectives for childhood CKD.

METHODS: A prospective study was conducted in CKD children aged 7-17 years in the pediatric clinic at a medical center in Taiwan. Children completed HRQOL assessment using Taiwan version of EQ-5D-Y, PedsQL at the time of study entry and 6 months after. The primary outcomes are validity and reliability of PedsQL both patient, parent-proxy versions. Cohen’s kappa coefficients, intraclass correlation coefficient (ICC) were used to estimate test–retest concordance, Spearman's rank correlation coefficient was used to determine convergent validity between children and proxy version of PedsQL, children-reported outcomes between PedsQL and EQ-5D-Y Visual Analogue Scale (VAS).

RESULTS: Of 111 children in the study, 42 completed both instruments twice. The parent-child agreement was greater on physical health domain than school and psychosocial domains. The ICC of PedsQL proxy version in the sum scores of physical, emotional, social, school and psychosocial health dimensions (0.31 to 0.57) were higher than children (0.14-0.59). The agreement between the patient and observer was not consistent high for every dimension and especially for emotional (0.42, p=0.001) and school functioning (0.46, p<0.0001). Correlation between PedsQL dimension and EQ5DY VAS score was low-moderate (0.16-0.39), and the highest correlation was in emotional (0.39, p=0.01) and psychosocial (0.33, p=0.03) and school (0.30, p=0.05) functioning.

CONCLUSIONS: PedsQL is reliable and valid for children with mild-to-moderate CKD. The parent-child agreement was greater on physical health domains than school and psychosocial domains. These results suggest that parents- and children-rated HRQOL cannot be considered interchangeable, especially when assessing school-aged children with CKD.